A Narrative Examination of Indoor Tanning a Dissertation Presented to the Faculty Of

Tanning Stories Truth and Consequences: A Narrative Examination of Indoor Tanning

A dissertation presented to

the faculty of

the Scripps College of Communication of Ohio University

In partial fulfillment

of the requirements for the degree

Doctor of Philosophy

Vicki L. Crooks

August 2014

This dissertation titled

Tanning Stories: Truth and Consequences: A Narrative Examination of Indoor Tanning

VICKI L. CROOKS

has been approved for

the School of Communication Studies

and the Scripps College of Communication by

William K. Rawlins

Stocker Professor of Communication Studies

Scott Titsworth

Dean, Scripps College of Communication

ii ABSTRACT

CROOKS, VICKI L., Ph.D., August 2014, Communication Studies

Tanning Stories: Truth and Consequences: A Narrative Examination of Indoor Tanning

Director of Dissertation: William K. Rawlins

Indoor tanning is a 5 billion dollar a year industry. The individuals and organizations who are a part of the indoor tanning industry promote indoor tanning as a healthy natural activity. However, in the medical community, indoor tanning is recognized as dangerous, a leading cause of melanoma and other skin cancers. These conflicting organizational narratives are part of a larger national conversation regarding the practice of indoor tanning. Both sides in these debates seek to inform and influence public policy and personal behaviors. This is an examination of tanning stories, from the meta-level organizational narratives, to the meso-level narratives of influential individuals and political advocates, and the micro-level narratives of tanners who became melanoma patients.

Melanoma rates are rising and so are the number of cases diagnosed in young women who have a history of indoor tanning. Using physician and patient interviews, I examine the use of narratives at every level, to support or change beliefs about the benefits and dangers of indoor tanning, to impact legislation, and to influence behavioral choices. Using patient stories, it is possible to consider the role of narratives in health decisions and rationalizations. Ultimately, it is apparent that positive applications of narrative in medicine support relational processes, and becomes a means to identity change.

iii DEDICATION

This is dedicated to my “team.” Headed up by a husband who cooked and cleaned and

cared for me, my family has provided emotional and material support throughout this

process. Their efforts enabled and encouraged me. In dedicating this to them, I acknowledge the shared nature of this accomplishment and express my gratitude and love

to the best family ever.

iv ACKNOWLEDGMENTS

I wish to acknowledge and thank my advisor, William K. Rawlins and committee members Lynn M. Harter, Brittany Peterson and Joseph Bianco. You have been mentors and friends and my work is better because of your care. Brittany, your unique perspective and attention to detail challenged me to clarify my goals and broaden my thinking. Lynn, the purposeful positivity in your writing and teaching serves as a model and an inspiration for me. Joe, I have appreciated your insights and enthusiasm for my topic. I am honored to have you serving as the Dean’s representative. Finally, to Bill my advisor and friend, I have learned so much from you. Your classes equipped me as I developed a scholarly identity, and your scholarship inspired me to consider, and celebrate, possibilities. I am a better writer and a better teacher because of you. I have learned firsthand the difference encouragement can make. From my first assignment when you scrawled, “do tell” and “I’m listening” on my paper until today, I have striven to do well in order to please you, to earn one of those coveted gold stars. Today, I hope you are pleased.

I also want to acknowledge the patients and physicians who generously shared their time and courageously shared their stories. I could not have done this project without their help. It was a privilege to meet these patients and witness them cope with difficult situations using faith, humor, and hope. It was inspirational to speak with the physicians who spend their own resources of time, money and energy to advocate against indoor tanning in the hope of preventing any more deaths or injuries due to tanning bed exposure. A special thank you to Dr. Brod and Dr. Sullivan, you are heroes! You both embody the highest ideals of your profession. I understand why your patients say they are

v lucky to have you as their physicians, why they feel secure, why they love you. I feel lucky to know you as well, thank you for everything.

vi TABLE OF CONTENTS Page Abstract…………………………………………………………………………………...iii Dedication………………………………………………………………………………..iiv Acknowledgements……………………………………………………………………….iv Chapter 1: Introduction ...... 1 My Approach: Engaged Scholarship ...... 2 Plan of the Dissertation ...... 5 Indoor Tanning: The Scope of the Problem ...... 8 Chapter 2: The Method and the Means ...... 11 Impact of Personal Narratives ...... 14 Organizational Narratives ...... 16 Relating and Meaning-Making ...... 18 Reasons for a Narrative Approach ...... 19 Tanning Narratives from Patients and Physicians ...... 23 Questions for a Dialogue ...... 29 Chapter 3: Life and the Narrative Imperative ...... 33 Narrative Scholarship, Differing Orientations ...... 34 Narrative Persuasion, Knowing your Audience ...... 37 Stories are Essential across Disciplines ...... 40 Chapter 4: Organizational Narratives: Setting the Agenda and the Indoor Tanning Framing Wars ...... 54 Meta-Level Stories: Opposing Narratives ...... 56 The Risks and Benefits of UVR Exposure ...... 58 The Need for Vitamin D ...... 60 The Appropriate Role of Government Oversight ...... 63 Trickle Down and the Public Conversation ...... 67 Chapter 5: The Storytellers: Meso-Level Narratives ...... 77 From National Organizations to Influential Individuals and Companies ...... 80 Meso-Level Influence for Selling and Advocacy ...... 91 Advocacy Stories are Personal ...... 94 The Storytellers who use Meso-level Narratives in Order to Reduce Indoor Tanning 95 Fighting the Good Fight…with Stories ...... 96 Revisiting Logos, Ethos, and Pathos ...... 113 Chapter 6: Individuals and Micro-Level Narratives ...... 117 Meet the Patients ...... 121 The Initial Diagnosis ...... 122 Rationalizations ...... 135 Tanning and Dissonance ...... 138 The Sick Role, Physicians and Trust ...... 148 It’s all About the Sunscreen ...... 162 Influencing Others, or Not ...... 166 Scars Aren’t the Only Evidence of Change ...... 172 When (and How) Do You Know What You Know, and Does it Matter? ...... 176 Change and Identity ...... 183

vii The Unique Challenges of Melanoma ...... 187 Chapter 7: Narrative Mechanisms of Change ...... 192 Social Choices and Identity ...... 196 Identity Theory and Storying New Roles ...... 204 Quest Stories and Narrative Resourcefulness ...... 207 Changed Identities, Changed Stories, and Hope ...... 213 Intentional Training for Narrative Resourcefulness ...... 217 Chapter 8: Conclusions and Reflections ...... 219 A Unique Contribution ...... 222 Limitations ...... 225 Future Applications ...... 228 Training for Narrative Resourcefulness, Reprise ...... 232 References ...... 239 Appendix A: Tanning Facts Sheets ...... 266 Appendix B: IRB Approved Forms ...... 269 Appendix C: Interview Protocols...... 278 Appendix D: Pennsylvania tanning bill history ...... 283 Appendix E, Evidence from the FTC Hearing ...... 293 Appendix F, an example of legislative effort by the ITA ...... 294 Appendix G, Coupon for free tanning, available on The Ohio University Campus ...... 295

viii CHAPTER 1: INTRODUCTION

Sharing experience as stories is “wisdom stored forward" (Kaye & Jacobson, 1999, p. 2)

My interest in stories of illness and health goes beyond academic curiosity. I am the mother of a cancer survivor. At 16, my oldest daughter was diagnosed with acute lymphoblastic leukemia. My daughter survived, but I remember the fear, the pain, and the disruption of "normal life" that my family experienced. When my daughter was a patient at Oakland Children’s Hospital, we were asked if we would be willing to speak with a researcher about our experiences. We agreed and Elena Dorfman, author, photographer and cancer survivor, entered our lives. Over the course of several months Elena met with each member of the family, asking questions and becoming our friend. She interacted with us, not simply as a researcher collecting information, but as a friend who was herself only too familiar with life on the children’s cancer floor.

I have tremendous empathy for families affected by cancer. I know what it feels like as a mother when your daughter receives a life-threatening diagnosis. Indoor tanning has resulted in thousands of young women developing malignant melanoma. It has caused immeasurable suffering and contributed to premature and unnecessary deaths. I already identify with the experience of a cancer diagnosis; now, I want to reduce the likelihood of such a diagnosis by speaking out about the truth and consequences of indoor tanning. In order to speak about tanning, I needed to hear the stories of experience. I believe that sharing such a story can be useful for the tellers and the hearers, providing meaning and cohesion and resulting in a story that may later become a powerful rhetorical tool.

My Approach: Engaged Scholarship

This study uses a narrative approach to consider diverse discourses about tanning.

As a narrative about narratives, I tell a story about stories—what stories are, how stories are used generally for meaning-making and identity-shaping, and how stories are used in the context of indoor tanning. I examine competing meta-narratives about tanning, personal accounts of the consequences of indoor tanning, and rhetorical choices regarding the persuasive use of stories for various audiences.

This dissertation project is a collaboration; in order to examine the integration of theory with practice to address real-world issues, I worked with dermatologists and patients so that I might hear and later, re-tell their stories. Everyone involved was motivated by the hope that such stories can contribute to the efforts being made to bring about policy changes. This collaboration fits Van de Ven & Johnson’s definition of engaged scholarship as a “collaborative form of inquiry in which academics and practitioners leverage their different perspectives and competencies to coproduce knowledge about a complex problem or phenomenon that exists under conditions of uncertainty found in the world” (Cited by Barge & Shockley-Zalabak, 2008 p. 252). Too often academic research fails to make an impact because it is neither widely read nor particularly accessible to those outside the discipline. Frey (2009) encourages communication scholars to use their research to make difference. Cheney (2007), who notes that in our discipline conventions are changing. Rather than limit our scholarly work to the theoretical and abstract, he encourages organizational scholars to be bold as they move in style, substance, and venue beyond disciplinary constraints.

I became interested in the topic of indoor tanning through conversations with my daughter, Joanna, while she was employed by the American Academy of Dermatology

(AAD). She and I discussed the challenges associated with their efforts to educate policymakers and other stakeholders about the dangers of indoor tanning, and their attempts at convincing state legislators to enact legislation prohibiting the use of tanning beds by minors. As a graduate student studying communication, I had a particular interest in health communication and narrative; I believed that personal illness narratives might play a part in this national conversation. Ultimately, I hoped to make a contribution by sharing unique personal stories about the truth and consequences of indoor tanning.

At every level stories about tanning are consequential. Meta narratives created and distributed by organizations can influence the meso-level stories shared by influential individuals and decision-makers. At the micro-level individual conceptions of health and rationales for participating in potentially health-impacting behaviors such as visiting a tanning parlor are influenced by multiple sources: family, friends, media, education and societal conventions. Beginning with the meta-level, I examine the conflicting claims from two highly visible organizations about the benefits and risks of indoor tanning.

Using material from the American Academy of Dermatology (AAD) and the Indoor

Tanning Association (ITA), I contrast their respective positions regarding the relationship of tanning to health. Because each of these organizations creates messages for multiple audiences, I examine the use of narratives by each organization’s representatives in public, legal and political contexts.

The influence and impact of these narratives is not uni-directional. Just as meta- level messages can influence individual people; so too, can individual people shape meso and meta narratives. Clearly, behaviors shape our stories, but I am equally convinced that the stories we tell shape our behaviors. Ultimately, individual attitudes and behaviors are the result of believing certain stories, while ignoring, disbelieving, or simply being

3 unaware of competing narratives. In interviews with patients, I asked about beliefs and social influences in order to better understand how tanning stories factored in to their individual decisions to tan.

The primary focus of this project is the individual stories of patients and physicians. I spoke with physicians who do double duty—treating patients with skin cancer, and lobbying policy-makers for regulations they hope will prevent future cases. I spoke with patients—individuals who tanned and then were diagnosed with skin cancer, women who are now living with tanning’s significant consequences. By hearing and recording their stories I hoped to better understand how narrative is used in change—in the navigation of serious illness, the negotiation of identity and the resulting revisions of future plans. I was also interested to hear about the unique contribution physicians can make as they help patients navigate the illness journey.

Eventually Elena’s book, The C Word: Teenagers and their families living with

Cancer (1993), was published. Our family was profiled in the first chapter. That chapter contains snapshots, literally and figuratively, of particular times and places in our lives.

Looking at the photos or reading what my now grown, but then young children thought or felt, has the power to bring the emotion of the experience rushing back. As a family and as individuals we were all impacted by Jenny’s illness. It was a gift to have Elena as a friend, and an empathetic, supportive listener. And unlike other life stories or reminiscences, the stories that are preserved in Elena’s book are unchanging over time, a window to bygone perceptions. Although they chronicle an incredibly difficult time, I treasure them.

In some small way, I hope that my conversations with patients about tanning had some of the same positive qualities as our family conversations with Elena. I expressed appreciation to each individual who was willing to share; I tried to listen carefully, and capture their stories accurately. I felt a sense of connection with each woman. I hope they experienced the interview as positive and affirming. Perhaps while talking with me about future plans and positive changes, they reminded themselves as well. It can be life- altering to realize the power of stories to shape the path forward. For patients stories become illness narratives, yet stories are also the means and the medium for navigating the changes wrought by illness. These personal accounts are stories I am privileged to be able to hear. Ultimately, my hope is that co-telling these stories will serve as a cautionary tale. Stories provide us the means to frame, shape, share, and redeem the experiences of our lives. Stories are our lives. Believing one story about tanning over another may have serious consequences.

Plan of the Dissertation

In order to understand personal narratives related to indoor tanning, I believe it is useful to have a sense of the complex and highly contested cultural conversations regarding tanning. Those cultural conversations occur at meta and meso-levels. That is, organizational meta-narratives are reiterated by individuals who, by virtue of a broader scope of influence, communicate at the meso-level, and elements from these narratives trickle down, becoming part of individual micro-level stories. In addition to tanning stories at meta, meso and micro-levels, it is also important to recognize how narratives serve a sense making, or sense restoring function. I will discuss narrative as a method for inquiry across disciplines, and narrative as a means for creation and change.

In Chapter Two I explain the means and methods of my project. I discuss the reasons for a narrative methodology and review relevant literature. I describe the participants, and explain the process I have used to collect participant stories. Chapter

Three includes a basic overview of narrative as a discipline-spanning paradigm for understanding and relating. Beyond the discipline of communication, narrative approaches are being applied in such fields as business, medicine, education and psychology. I include a sampling of perspectives from other disciplines and note the overlap.

Chapter Four contains an overview of meta-level organizational narratives. These narratives are comprised of academic and professional claims regarding indoor tanning.

They inform research agendas, public policy, and consumer understanding. When an

“expert” opinion, pronouncement, or recommendation is called for, it most likely emanates from such organizational narratives. Of course, attitudes toward tanning and tanning behaviors are influenced by factors outside of academic, healthcare, and legal arenas. It is important to consider that the “experts” are not the only ones with opinions that matter, and their positions don’t represent all possible arguments for and against tanning. But organizational narratives do trickle down and become incorporated into meso-level and micro-level individual narratives. I include an example of the trickle down process through the use of an extended example excerpted from responses in an online forum.

Moving from the organizational overview to the relevant particulars, in Chapter

Five I describe the concept of meso-level narratives used by individuals who, by virtue of their position or profession, have an opportunity to interpret and reiterate organizational narratives in order to influence and persuade others. This chapter also includes examples

6 of the online, meso-level messaging from tanning salon owners and tanning industry supporters. In this chapter I provide a more detailed introduction to the physicians I interviewed and excerpts from our conversations about their use of meso-level narratives in advocacy. The anti-tanning advocates I spoke with talked about the successes and frustrations they experienced while attempting to impact tanning legislation. They also spoke about their reasons for using stories as opposed to scientific data and their strategies for enlisting support. Talking with me, they speculated about the personal and professional impact of their work as advocates.

Chapter Six consists of patient stories, individual stories of diagnosis and adjustment. These are micro-level narratives about their experiences with skin cancer and melanoma, their beliefs about tanning, and their relationships with physicians. Although one patient interviewee has been diagnosed with basal cell and squamous cell cancer, rather than melanoma, the cancer I am primarily focusing on is melanoma, the deadliest form of skin cancer. Like any other disease, ailment, or condition, melanoma has unique characteristics. I learned about some of these characteristics, and I heard about the treatment process from their perspective as patients. I also learned that living with this disease involves planning for a recurrence, and that in light of this need for long-term vigilance, the relationship between patient and physician becomes especially important. I close the chapter on patient stories with an account of the personal lessons I learned about thinking with stories. I share the expectations I had about what I would hear prior to conducting patient interviews. I describe how my assumptions were challenged once I met these women and actually heard their stories.

Chapter Seven is about hope and change. I examine narrative mechanisms of identity change – how patients used narrative to create new or revised self-stories. Using

7 identity theory, and comparisons with other patient stories, I consider how stories allow an identity-disruption, such as serious illness, to be incorporated into a cohesive narrative facilitating the process of role acquisition and identity change. Using Frank’s model of illness narratives I consider the role of guides in patient quest stories, and the contributions caring physicians can make in helping patients to shape a new narrative and a positive outlook. Narrative is a critical component of hope. A burgeoning awareness of the importance of hope demonstrates that what was known from ages past is new again.

This chapter closes with my thoughts about our responsibility as communication scholars to equip students with narrative resources. In Chapter Eight, I present concluding thoughts and reflections. These include a discussion of future avenues for engaged scholarship and anti-tanning advocacy. I describe ways that communication scholars might use their expertise in the areas of narrative training and tanning advocacy. At the meta, meso, and micro-levels, communication scholars can contribute by partnering with those already working to shape the prevailing cultural narrative about tanning.

Indoor Tanning: The Scope of the Problem

Stories about the possible consequences of indoor tanning are important because compelling stories have the potential to influence decisions that may save lives…or cost lives. According to Eleni Linos M.D. DPH., head researcher on a meta-analysis of medical articles spanning a decade and involving 80,000 patients, “Hundreds of thousands of cases of cancer each year are attributed to tanning beds” (Linos, 2012, cited by Fernandez, italics added). Researchers conducting this meta-analysis of tanning articles estimated that each year in the United States 170,000 new cases of non-melanoma cancers are caused by tanning.

They point out that thousands more happen internationally (Fernandez, 2012).

Tanning rates continue to rise and so do skin cancer and melanoma rates (Woo &

Eide, 2010). Despite the fact that tanning can contribute directly to medical conditions such as skin cancer, burns, rashes, eye damage, and immunity problems, on an average day, more than one million people in the United States will use a tanning salon (Banerjee, Campo, &

Greene, 2008). According to a 2003 article in the Archives of Dermatology, 2.3 million teenagers used indoor tanning devices during that year alone (Dellaville, Parker, Ceronsky,

Hester, Hemme, Burkhardt, Chen & Schilling, 2003). Teens are particularly at risk because adolescent skin is especially susceptible to skin damage due to rapid growth at the cellular level (Reynolds, 2007). A recent study reported that 76% of melanomas diagnosed between

18 and 29 years of age were attributable to tanning bed use (Ratanaprasatporn, Neustadter &

Weinstock, 2011).

The Skin Cancer Foundation provides stark and startling statistical information about melanoma and other cancers on their website. Of course, not every diagnosis of melanoma is attributable to indoor tanning. But lest anyone miss the connection, the Skin

Cancer Foundation also provides a Tanning Fact Sheet. Both of these Fact Sheets are included in Appendix A. Many of the topics addressed on these Fact Sheets—the statistically significant difference regarding the likelihood of developing each of the three types of skin cancer between tanners and non-tanners, or information about sun lamps that produce 12 times the UVA as sun exposure, are the same topics that surface again and again in popular and academic forums. Later, as part of our examination of tanning narratives, some of these core issues are discussed and the organizational narratives surrounding them are compared.

The time is right for communication scholars to become more engaged with policy and social issues (Cheney, 2007). Indoor tanning is the policy and social issue that

I am addressing because as Dr. Brod said, “It’s wrong: these people these tanning salon operators are profiting at the expense of people’s health and lives, and that’s an injustice”

(Personal interview, 2013). More than a simple research project, I view this writing as a moral obligation.

CHAPTER 2: THE METHOD AND THE MEANS

“Narrative, or as I prefer, storytelling, is just exceptionally exceptional” Arthur W. Frank (2010, p. 665)

This chapter is designed to orient readers to the frames of reference I will use throughout the dissertation. The ‘method’ I refer to is narrative inquiry. I am using a storied approach that is both unique to the research topic of indoor tanning and uniquely appropriate to the subject of health disruptions caused by indoor tanning. I take a broad and encompassing view of narratives. As a researcher interested in the impact of narratives on identity and health, I believe stories, as the basic unit of meaning-making, accomplish multiple functions that I will explore in the following pages. By ‘means’ I am referring to both the process I used to recruit participants as well as the philosophical guidelines that influenced my choices. Method and means also refers to what I hope will be the ultimate result of sharing these stories—a broad understanding of the national debate regarding indoor tanning and a deep empathy for the patients who live with the personal consequences. Considering the methods of narrative persuasion used by organizations and influential individuals is a means to understanding the impact of those stories on personal health beliefs, and legislative action.

I believe my focus on patient and physician stories in the context of larger organizational stories played out in mediated and legislative arenas is an important addition to the current scholarly discussion of indoor tanning. As a narrative project, focusing on the individual tragedies represented by the cancer statistics, my work is very different from the existing literature on indoor tanning, which is overwhelmingly quantitative (Stellefson & Chaney, 2006).

Currently, there is a preponderance of evidence that indoor tanning behaviors are harmful, a great deal of medical reporting regarding the carcinogenic properties of indoor tanning, and clear statistical indicators that the increase in tanning behaviors corresponds to an increase in melanomas and other skin cancers (Lim, James, Rigel, Maloney,

Spencer, & Bhushan, 2010). There have been articles that document the lack of governmental oversight through inspection or regulations of tanning parlors (Levine,

Sorace, Spencer, Siegel, 2005). There has been research into media messages regarding tanned skin, and recommendations regarding appearance-focused interventions

(Heckman, Wilson, & Ingersoll, 2009). There have been examinations of tanning correlates (Lostritto, Ferrucci, Cartmel, Leffell, Molinaro, Bale & Mayne, 2012), tanning addiction and high risk behavior (Rimal & Real, 2003; Shah, Smith, Heckman, &

Feldman, 2012).

Scholars have examined tanning choices using various theories of behavior and learning, and models of health beliefs (Hillhouse & Turrisi, 2012). Good preliminary work has been done by scholars seeking to better understand the interplay of modeling, peer influence, and perceptions of susceptibility (Reynolds, 2007). The insights gained from such studies provide additional evidence that interventions are necessary, as well as providing understanding about tanning behaviors that can inform intervention design.

(Hillhouse & Turrisi, 2012). But this is a field that is still in the early stages of development. Intervention efforts have not been systematically applied or tracked longitudinally for efficacy and indoor tanning seems to be as popular as ever (Turrisi,

Hillhouse, Mallett, Stapleton, and Robinson, 2012).

There is demographic and attitudinal research. We know, for instance, that young white girls in the Midwest are more likely to visit tanning salons than girls in other parts

12 of the country (Dellaville, et al., 2003). Students have been surveyed about their tanning histories, their beliefs regarding the potential health risks of tanning, their television viewing habits, and whether or not their mothers tanned (Pettijohn, Pettijohn and

Geschke, 2009). There even have been studies examining the effect of narrative vs. statistical evidence on the stated intention to tan. In one such study, researchers gave 141 college students messages about the dangers of tanning in one of three message formats.

Students completed surveys that included statistical evidence, a case study, or a survey without any message at all. The students rated statistical evidence higher for information value and narrative evidence higher for believability. In this case, the researchers found the statistical message was slightly more effective in reducing students’ stated intention to tan. The authors noted that any message was better than no message and suggested that in future campaigns, a message containing both statistical and narrative evidence may be more effective than either approach used alone (Greene, & Brinn, 2002). A later study indicated that scientific or statistical evidence was less effective than normative or anecdotal messages (Greene, Campo & Bannerjee, 2010).

Despite the breadth of research on indoor tanning that is currently available, I have never read a scholarly article that focused on personal accounts of the health consequences of tanning. Therefore this narrative project makes an important contribution to the literature on indoor tanning by focusing on personal stories. Perhaps a compilation of stories such as the one developed here can be a useful resource for those who seek to make a persuasive case regarding the health-destroying properties of tanning beds.

Impact of Personal Narratives

Examining the current literature related to indoor tanning, three things become apparent. First, within medicine generally the evidence that tanning increases the risk for skin cancer is widely accepted. Healthcare providers and agencies such as The Centers for Disease Control and Prevention, The Department of Health and Human Services, The

World Health Organization, The American Medical Association, The American

Academy of Pediatrics, and The American Academy of Dermatology, are all in agreement about the dangers of tanning. Many of their members actively campaign to discourage the use of indoor tanning equipment (AAD, 2012; AAP, 2011; Loh, 2008).

Second, many articles which address indoor tanning have a single disciplinary focus, with dermatologists writing in dermatology journals, and communication scholars writing in communication journals. However, this trend seems to be changing. I believe this research makes a contribution to that effort by modeling interdisciplinary partnerships that hopefully will encourage future cross-disciplinary conversations. It stands to reason that working with others outside our field will lead to an increased awareness regarding the scope of the problem and a greater likelihood of the development of effective health messages, campaigns, and interventions. Finally, the fact that this academic literature is overwhelmingly quantitative means a persuasive gap exists. Scientific literature typically is written for scientists who are comfortable with statistical evidence. But in order to craft a persuasive message for audiences other than scientists, it is increasingly important to include qualitative elements such as personal narratives. The unique and powerful role that narratives can play in sense-making means that a story-based project has the potential to be a valuable contribution to health communication literature. So too does the

14 examination of the narrative collaboration between patients and caregivers in the effort to achieve shared political goals.

A national conversation regarding the contested definition of health in relation to tanning is taking place. As we have seen, dermatologists are not the only ones telling tanning stories. The Indoor Tanning Association, SUNARC, and other pro-tanning organizations are also telling stories and promoting a definitional agenda. The definitions of health and tanning matter because ultimately these definitional frames impact policies and policies impact beliefs and behaviors. There is sound statistical evidence demonstrating the danger of tanning but sometimes, statistical evidence is not as persuasive as anecdotal stories are. In a study of public discussions regarding the potential health risks of saccharin,

Bantz (1981) argued for narrative evidence believing that the public has a hard time judging the quality of scientific (statistical) arguments. Conversely, he pointed out that a compelling personal story is both influential and memorable (Cited by Vanderford &

Smith, 1996). McDonough (2008) writes that because stories are so central to our lives, they also are central to policymaking. A story provides lawmakers with the means for understanding a problem or a need in a new way. Stories help lawmakers to think about the consequences of particular policy decisions. McDonough explains that stories resonate because "part of our uniquely human heritage involves telling stories to find meaning from the events, data, and stimuli in our lives" (p. 10). Sharf (2008) echoes this sentiment, reminding readers that illness narratives of breast cancer have "raised social awareness, destigmatized the disease, and been key in creating significant changes in health policies" (p. 14).

Organizational Narratives

Organizations exist to accomplish something. Stories are an element of organizations; they are used to define and create organizational culture, they illustrate organizational goals and define organizational truths (Beckman & Barry, 2009; Lin,

2012). Stories also are the product of organizations. Stories are the means of sharing organizational ideals with those outside the organization. Often, organizational stories about indoor tanning are political efforts to prevail in a framing contest. A brief examination of the differences between the stories of the AAD and the ITA, make it clear that their positions and definitions are at odds with one another. These clashing narratives are starkly evident in public policy conversations and marketing campaigns that aim to increase consumer identification with a product or point of view. Charland (1987) calls rhetorical identification the, “discursive effects that induce human cooperation” (p. 133).

Pro-tanning and anti-tanning organizations make rhetorical choices when they are framing the story of tanning in order to persuade audiences and promote their organizations’ diametrically opposing goals. The public is barraged with stories that contain persuasive messages. We have seen how the stories we believe and respond to have the potential to impact health behaviors. Sometimes the persuasive efforts of organizations are focused not on the public, but on legislators. The stories that policymakers believe also have the potential to impact behaviors and profits. Because some aspects of indoor tanning are regulated, stories from pro-tanning and anti-tanning organizations serve an agenda-setting function; their arguments form the basis for policymaking decisions regarding access and oversight. Recently, a state dermatology association, as part of its effort to pass a bill limiting access to tanning beds by minors, partnered with communication students and scholars to create a communication strategy.

The result was a communication plan that recommended, among other things, that more stories be used. Researchers involved in this partnership believed that the narratives of individuals who had been adversely affected by tanning could be important additions to persuasive lobbying efforts seeking to change the beliefs and behaviors of legislators.

The communication consultants explained that including the stories of patients, families and physicians would facilitate the development of a personal sense of identification between audience members and storytellers. Such identification would result in a more persuasive message for an audience of legislators (Kamradt, Myrick, Schmidt, 2012).

Human beings are concerned about personal health and well-being, so in the broadest sense, everyone is a potential consumer of health communication. But, as in every other communication context, it is important to tailor messages for a given audience. In the case of indoor tanning, it is possible for a physician to provide stories in the context of a single patient interaction, as well as a larger audience or population. Lin

(2012) suggests that physicians assume a leadership role by becoming storytellers in larger meso-level contexts. Well-told narratives about the risks of tanning can be widely disseminated to health care providers, patients, families, policy-makers, scholars, educators, and the general public (Lin, 2012). I interviewed physicians who are attempting to do what Lin suggests by becoming leaders and storytellers in their advocacy work and in their work with patients.

A narrative transports hearers into the world of the speaker. This identification and personalization makes stories a significant tool for changing beliefs (Green & Brock,

2000). This is part of the reason why entertainment television can shape health beliefs

(Morgan, Harrison, Chewing, Davis & DiCorcia, 2007). This is also the reason why personal stories of the serious health consequences of tanning must be shared beyond

17 clinic walls and academic journals. Legislators are making decisions regarding access to tanning beds and they need to hear artful, evocative stories.

Relating and Meaning-Making

Storytelling provides a means for conceptualizing and interpreting our world. We gain a sense of self and others by participating in relational story-sharing activities.

Stories provide a means for relating (Beck, 1994), for knowing oneself and others,

(Frank, 2010), for personal continuity (Crites, 1986; Freeman, 2010), and for providing moral insight (Freeman, 2010). Narratives are a resource for living (Frank, 2008; Kirby,

1991). They may guide self-change (Frank, 1993), and provide a sense of order during chaos (Frank, 1995; Kirby, 1991). Speaking, listening and responding to stories are creative, sense-making practices (Cunliffe, Luhman & Boje, 2004). Stories enable us to make our experiences available and understandable to others (Lindlof & Taylor, 2002).

They also are the means by which our experiences become available to us. Our lives are storied and our sense of self as “I” is crafted and corroborated in self-told stories, memories, recollections and hindsight (Crites, 1986). As relational beings our stories mix and merge. As empathic beings stories move and motivate us.

Narrating our experiences can provide us an opportunity to imbue them with meaning. Talking with others about an experience helps us to determine and express its value. Such sharing reinforces the fact that our lives are meaningful (Kirby, 1991). Seeley and Reason (2008) write, “how we form and in-form our living in turn influences and patterns our responses to the world" (p. 43). Our experiential knowing, the way in which we make sense of our experiences, will impact our presentational knowing, or how we negotiate our identities and interactions with others (Seeley & Reason, 2008).

Reasons for a Narrative Approach

As storytellers, persuasion and decision-making are intimately bound up in our ability to tell good stories and to recognize good stories when we hear them. Stories that make sense, stories that resonate, and stories that reasonably correspond to the hearer’s understanding of the world provide their audience with reasons for making decisions

(Fisher, 1984; 1987). As embodied beings, stories of health and illness are especially relatable. What is common to all of us is that our earthly existence involves a flesh and blood body that will experience hurt and health, illness and recovery, strength and decline, and, at some point, death. Reading about another’s experience of pain, suffering, illness and even their journey toward death, can provide insight into our own inevitable rendezvous with illness and loss.

Health and illness narratives have been used to empower patients, raise awareness, and personalize statistical evidence. As the author of this dissertation I am seeking to make a contribution in all of these areas. There is overwhelming evidence that indoor tanning is a dangerous practice. Accordingly, the present work aspires to become part of the larger cultural conversation about indoor tanning, providing a vehicle for patient voices and an empathy-building, persuasive supplement to the statistical evidence.

Before conducting interviews my hope was that those who participated would find the process to be worthwhile, and I am gratified to report that was indeed the case. I also hope that those who read these stories will find themselves engaged, moved, and perhaps even compelled to join the battle.

I am co-telling stories of human experience, experiences that are both similar to and uniquely different from my own. I find the commonalities in our stories become a touchstone for connection. Meanwhile, the differences are instructive, providing insight

19 into perspectives that are perhaps less easy to relate to, but no less moving. Ellingson

(2011) writes, “like all art, creative social science representations enable us to learn about ourselves, each other, and the world through encountering the unique lens of a person’s

(or a group’s) passionate rendering of reality into a moving, aesthetic expression of meaning” (p. 599). Ellingson goes on to say that such representation may inspire or engender compassion. I hope that re-presenting the personal stories of patients and physicians will likewise provide readers with a fuller understanding of the consequences of tanning, and an opportunity to be moved.

Lincoln and Denzin (2005) suggest that broadening and bricolage in qualitative research allows for different forms of reporting and reduces the need for methodological conformity, and furthermore that this diversity of approaches represents strength and possibilities. Recognition that a variety of approaches to description and interpretation can be meaningful and useful as we seek to comprehend and communicate our lived experiences has led to a plethora of methodological approaches. It has led me to a narrative approach. Although there is a great deal of narrative communication research, there is not always agreement about how to conceptualize, characterize, or analyze a narrative. My definition of narrative is broad and encompassing. Some may draw careful distinctions between the concepts of “narrative” and “story;” I do not. Nor do I believe that any particular characteristics must be present to qualify a personal account as a narrative. In a discussion with fellow scholars about definitions of story and narrative, someone remarked that if story was everything, it was nothing. I disagree. I think that the concepts of story and narrative really do encompass everything humans experience. And the fact that stories are common and plentiful does not diminish the importance and power of stories. I relate to Bochner’s sentiment when he posed the questions “all the fuss

20 over the true nature of narrative…where does this get us? What are the motives that inspire us to make these distinctions?” (Bochner, 2001, p. 143).

Narrative is for me an all-encompassing paradigm because meaning only occurs within the context of a story. Of course this is story writ large. I use the terms story and narrative are synonymously to describe the sense-bringing explanations that we use to answer and define, to explain and implore. Cunliffe, Luhman & Boje (2004) suggest that we, “construct and narrate the very accounts we think describe the world” (p. 4).

When I compare using stories to using other types of evidence or when I asked patients and physicians to share stories, I am not implying that stories are narrowly defined. I am simply making the distinction between story episodes involving more personal and descriptive styles as opposed to stories told using numbers, scientific data or information less obviously tied to individual sources. It can be difficult to speak about such broad concepts as stories or communication without using imprecise sub-categories.

Thankfully, in the context of my interviews, everyone seemed to understand this conventional comparison and, just as we can reflect on the process of communication as we communicate about types of communication, we were able to talk about stories as we told, listened to, and became part of one another’s stories.

My approach as a scholar is to collect stories, celebrate stories and to encourage the storytelling impulse. For this dissertation, I chose to listen to, consider, participate in, and share, stories about tanning and consequences. A narrative approach in this project means that I have sought out and included tanning stories on multiple levels and in multiple contexts. At the meta-level are organizational narratives, the scientific, legal, academic, and marketing claims made by “experts” in the field. These narratives are used in a variety of settings to persuade audiences from policy makers to the general public.

They also are the basis of many meso-level narratives told by organizational members, representatives and supporters. Functioning as a resource for mid-level groups, these organizational stories trickle down and are reiterated at the meso-level, embodied in more local expressions, you might hear them re-told at a free skin cancer screening, a college sorority presentation, or in an interview with the local paper. At the micro-level, elements of these expert pronouncements may be appropriated, incorporated, elaborated, even misapplied to a greater or lesser degree into the personal-level stories that inform individuals’ beliefs. Stories provide a rational for decision-making, stories explain choices, and stories are needed when choices go awry.

Listening to individual tanning narratives provided an opportunity to hear about the lived and living consequences of personal story making and story believing. A narrative approach allows for multiple stories, which is important in this case of contested narratives, while honoring the stories of individual contributors. This is a story about tanning stories. It is also a story about using stories to persuade and stories as a resource for coping with disruption and the unanticipated consequences of tanning. These conversations are opportunities to reflect on what stories sufficed in the past, and to consider how circumstances may create a need for new stories.

Frank (2005) reminds readers of a simple yet profound truth, research is the representation of another. He suggests that researchers have an ethical responsibility to avoid approaches that involve monological discourse that would finalize another’s story.

Narrative research is dialogic and stories call forth other stories. Listeners, readers and storytellers can all be involved in the “perpetual generation” of stories (Frank, p. 967).

Ideally, these tanning stories will do just that by providing insights that will be used to inform future stories.

Tanning Narratives from Patients and Physicians

In articles and stories of illness and loss, cancer tends to be well represented. Yet within the field of cancer-related health research, disruption caused by melanoma associated with tanning has not been explored in depth. Several factors make this a unique and compelling area of study. Tanning can be devastating to health, but it is often framed as a “healthy” behavior. Because of that mischaracterization, illness can be an especially cruel surprise. Consider the following: it is often young “healthy” people who are diagnosed with life-threatening skin cancers; tanning is marketed as a “healthy” activity; tanning can contribute to a “healthy” sense of relaxation; and indoor tanning is often viewed as a social event, joining others in what seems to be “healthy” socialization, or as an activity undertaken by those involved in health-related or athletic endeavors.

However, the truth is that in this case what has been thought of as “healthy” is not. Evan

Farmer MD, Dean of Eastern Virginia Medical School, is quoted as saying that what is needed "is a move back away from society's idea that a tan is healthy and good." He went on to point out that the perceived benefits, "are driven largely by Hollywood and fashion magazines” Farmer advocates tanning stories that contain more truthful and appropriate messages. Such messages have the potential to impact or change public sentiment.

Consider the change in public attitudes toward seatbelts. Seatbelt use now widely supported in the media, is positively valenced by the public as well. (Larkin, 2002, p.

206).

Cancer is universally recognized as wrong/bad/ugly/something to hate. But when cancer comes specifically from something often seen as good/healthy/young/wholesome, ideas about health may be shaken in a very unique way. Plans are disrupted and personal narratives require revision. How do patients, families and physicians deal with this

23 unexpected and potentially devastating disruption? How might narrative resourcefulness function as a means of coping? These are questions I wondered about before interviews. I believe the stories from physicians who treat these melanoma patients offer unique insights. Physicians shared their personal experiences as caregivers and as campaigners.

Although they are often acting in an organizational setting and professional capacity, dermatologists are individuals. And in the case of tanning, dermatologists are on the front lines. As individuals, physicians relate to patients, families, other healthcare professionals and policy makers. Often they are working to reduce or prevent tanning at the same time they are treating the consequences of tanning. Evidence of the complexity and gravity of these interactions as well as the motivation behind their personal philosophies of care were present in the stories from physicians.

The participants and particulars.

Framed by examples of organizational narratives regarding tanning, the individual accounts of patients and physicians help us understand their lived experience of tanning consequences. Working with dermatologists to identify and contact patients, I had the opportunity to interview individuals who have been diagnosed with skin cancer after indoor tanning. In addition to patient interviews, I also interviewed the dermatologists themselves about their experiences. As I indicated earlier, the primary focus of this study is the individual stories of patients and physicians. This project is a narrative account of the consequences of indoor tanning. “Narrative account” means I am using individual stories to tell a larger story about tanning and skin cancer. I spoke with patients and in one case the mother of a patient, who had been diagnosed with skin cancer after tanning.

I also spoke with physicians and a patient advocate about their personal experiences treating patients and their efforts at the legislative level to reduce tanning.

In addition to the stories of individual patients and physicians, I have included stories from organizations such as the American Academy of Dermatology (AAD) and the pro-tanning Indoor Tanning Association (ITA.) Examples of organizational stories can be useful as we seek insights about how competing narratives of tanning and its impact on health are being used to convince policymakers and the public. My purpose for including such examples is to demonstrate that a larger national conversation about tanning is taking place, and to point out that believing one story over another may have serious consequences. In April 2013, I received IRB approval for this study.

Recruiting the participants.

Through my daughter’s work at the American Academy of Dermatology, I became acquainted with several dermatologists. As I wrote about tanning issues, a few doctors became sources for information and advice. Two physicians were especially helpful, and as I began to develop my ideas for this dissertation project, I spoke specifically with these physicians about access to patients. Dr. Brod and Dr. Sullivan graciously agreed to help. Their help has taken many forms, including the facilitation of my recruiting efforts. After identifying a patient who fit the research criteria—an indoor tanner who developed skin cancer, they contacted potential interview participants and provided them with a recruiting letter that explained my project and invited those interested to speak with me. Dr. Sullivan set up phone interviews and Dr. Brod even provided me with office space for interviewing.

Dr. Sabra Sullivan MD, Ph.D., FAAD, is a nationally recognized leader in dermatology advocacy. A Stanford-trained dermatologist, Dr. Sullivan currently owns a practice in Jackson, MS. She has been in practice for 26 years. My other physician partner, Dr. Bruce Brod MD, FAAD, treats patients in his Lancaster, PA office. He is

25 also a Clinical Professor of Dermatology at the University of Pennsylvania; Legislative

Coordinator for the Pennsylvania Academy of Dermatology and Dermatologic Surgery; and Chair of AADA State Policy Committee. In addition to facilitating my patient interviews, Dr. Brod also made it possible for me to attend an AAD conference presentation. Admittance to the session was restricted to physicians, but in his official capacity as organizer, he assured me I was welcome. Copies of the recruiting letter and other IRB forms are included in Appendix B.

My approach to interviews.

My approach to interviews is narrative because I am eliciting stories and inviting discursive reflection on experiences. My approach is also hermeneutic and intuitive.

Traditionally, hermeneutics involved the subjective interpretation of texts, but now this concept of interpretation is applied to human exchanges, dialogues, and behaviors. This is an imprecise and relational process “imbued with the imaginative sympathy and analogous responses of the interpreter” (Cole, Chase, Couch, & Clark, 2011, p. 145). As a subjective and interpretive approach, every part of the process from research design to the analysis of the results are informed by the researcher’s experience, knowledge and opinions (Cole, Chase, Couch, & Clark, 2011).

The meaning-making that develops during the relational give and take of such an interview is not only the product of interpretation, it is also intuitive. Intuition functions as embodied reflexivity, a kind of logic-in-action and social interaction becomes a two- way learning process, an authentic response to individual circumstances and particular contexts (Cole, Chase, Couch, & Clark, 2011; Cunliffe, Luhman & Boje, 2004). I approached these interviews well aware of my biases, and well-informed on the issues. I was less aware of the impact that my own experience with cancer had on shaping my

26 expectations. A hermeneutic and intuitive approach allowed me the freedom to discard preconceived expectations and to be open to thematic identification and organizing that more closely matched the lived experience of interviewees.

I recognize that for me research and reflexivity are entwined; information that results from research is used to reflect on my own life, which in turn provides questions for future research. I trust the interpretive intuitive process and despite its limitations, I find ample reason to celebrate the “partiality and subjectivity of knowledge” that results

(Tracy, 2013, p. 253).

I spoke formally with 8 skin cancer survivors, 7 of which are melanoma patients. I interviewed 4 physicians and spoke informally with several others. I travelled to

Pennsylvania and conducted patient interviews in Dr. Brod’s office. I also conducted interviews with Dr. Brod and Cathy Poole at their respective homes. I went to New York to attend the AAD summer meeting and conduct physician interviews. I spoke with Dr.

Sullivan on several occasions and we corresponded using email.

I never envisioned anything other than face- to-face conversations despite the fact that an easier and less expensive option for conducting interviews would have been to use phone or Skype. I did end up conducting two interviews by phone. But for me there was a fundamental and important difference in the nature of our conversations when we were able to be physically present with each other. Being together meant we could see one another, so when someone pointed out their pale complexion, or another showed me how self-tanning cream made their skin look tan, I could see it. While talking to me about their scars, they rolled up their pant legs or pointed to the marks on their arms. And often, a hug seemed the most natural way to take our leave from each other once the interview was finished.

Physical presence brought an added dimension to face-to-face interviews, but whether face-to-face or by phone, my interviews were more like unscripted conversations. Because I had a few specific questions, I prepared a list of prompts to be used if necessary. However, in order for participants to share their stories, I felt it was important that they share the directional control of our conversations. For that reason, apart from those specific questions, I used primarily open-ended questions, with appropriate follow-up or probing questions when warranted, and allowed the conversations to flow naturally. I was committed to an actual dialogue marked by authenticity, attention and empathetic listening. The result was a series of encounters that were a positive experience for everyone involved. The interviews were taped and transcribed. The protocols used to guide the interviews are included as Appendix C.

In my interviews with physicians and patients, our conversations followed their natural course, veering away and back again to the subject of my questions. Because of the unstructured nature of our conversations, I was interested to note that, even by the third interview, certain themes were emerging. Common sense knowledge emerges from talk, reflection, understanding and interaction (Cole, Chase, Couch, & Clark, 2011). I was listening for such common sense knowledge from interviewees and I took note of recurring topics such as scars, sunscreen, and physician thoroughness. Despite the individual demographic differences and the opportunity each interview subject had to discuss anything related to tanning, illness, treatments, advocacy, or change, a few topics came up again and again. These recurring topics resulted in the choices I made regarding the thematic structuring of interview excerpts in chapter 6.

Questions for a Dialogue

How do individuals and families cope when the world they thought they knew and the definitions they unquestioningly accepted turn out to be false? Stephen Katz MD,

PhD, Director of the National Institute of Arthritis and Musculoskeletal and Skin

Diseases, a division of National Institutes of Health, explains that tans are signifiers, a sign of “something that doesn’t really mean what it means.” Being tan doesn’t really mean that someone is healthy. Despite this, the myth that tans are healthy is pervasive.

The vice president of global research and development for the cosmetics firm Estee

Lauder reiterates this perception, “Gold equals healthy and white equals ill…nobody wants to deal with people who look ill” (Cited by Hawaleshka & Righton, 2005 p. 4).

What happens when gold doesn’t equal healthy but instead equals cancer? I suspected that new narratives were constructed as a means of negotiating the new reality that illness imposed. If new stories help, then narratives may be a resource for dealing with disruption, but how? How do the stories we tell about our lives change the way we experience our lives? Health disruptions require a reevaluation of one’s personal narratives. The stories one carries and tells before an illness are often not adequate to explain a new and different situation, and thus new stories must be created. How does new story-making happen? How do we contribute to one another’s story-making?

These are questions worth asking even if the answers are partial and subject to change. Owning one’s research standpoint involves explaining what a research project is and what it is not (Ellingson, 2011). According to Frank (2005), dialogic research does not finalize; it is inconclusive because it is ongoing. With narrative research, there should be an acknowledgement of the fact that the future remains open. As a qualitative and narrative project, research questions provided an orientation for my research rather

29 than a hypothesis to be proven or a prediction to test. Lindlof and Taylor (2002) write that in qualitative research a research question, “articulates the researcher’s expectations”

(p. 88). I wanted my expectations of a research direction to provide the flexibility that is appropriate when others’ stories will make up a significant portion of the material. It was important to me not to overdetermine the interview process in service to my “research agenda.”

Bochner (2000) writes that his desire to engage in narrative research was prompted by the desire for a “more personal, collaborative, and interactive relationship” that enabled him to explore questions of meanings and moral and ethical choices (Ellis &

Bochner, p. 744). I too find these to be compelling reasons to choose narrative as a methodology. By inviting authenticity and recognizing the co-constructed nature of conversation, this approach allows for the artful collaboration of participants (Gubrium &

Holstein, 1997).

In a response to reviewers, Bochner explained his approach to narrative this way,

“our concerns in writing personal narratives and autoethnographies are not scientific, they are poetic” (1999, p. 497). I see my role as being a witness and re-teller of this poetry of human experience. A narrative approach necessitated interviewing that was flexible, and attentive to meanings or unexpected turns in the conversation. To wander conversationally provides opportunities for the stories of lived experience to emerge

(Warren, 2001), and for the researcher to retain what Rawlins (2007) calls “the capacity to be surprised” (p. 58). The conversational wanderings in my conversations allowed for mutual sharing, humor, and a sense more akin to speaking with a friend.

Before starting this project, I had to consider what kinds of stories I might hear. I was prepared to hear stories about illness and difficult treatments, stories of hopes and

30 fears, stories of poor choices and tragic consequences, stories of changed lives and untimely deaths. Asking someone to share his or her personal story is asking a lot. As

Frank (1995) says “telling does not come easy, and neither does listening” (p. xii). Frank goes on to explain how, despite the difficulty, both the teller and the audience may benefit, and I was hopeful that the benefit Frank referred to would make sharing a difficult story worthwhile for my interviewees. The act of telling helps the teller to form new perceptions or understandings of the world, a world that may no longer make sense, a means of reclaiming one’s voice and a measure of control. Telling also involves a willingness to serve others, to provide a glimpse, a road map into unfamiliar territory.

Writing about the cancer that would ultimately kill him, Harvard Law Professor,

Bill Stuntz noted this on his blog:

I want to write about those things, partly because the writing is therapeutic but mostly

because the nasty worlds of cancer and chronic pain are mysterious to most people. The

latter is no mystery to me, and the former is becoming less so with every passing day.

One thing I’ve learned about suffering over the past several years is that it’s all

subjective – pains are like snowflakes; no two are alike. My experiences aren’t

representative and they aren’t important, save to me and those close to me. But I think,

maybe, they offer a window into a world that a lot of people never see. It’s an ugly

world. But seeing it is important, if only because so many of us call that ugly world

home. (Stuntz, 2008).

As the above excerpt from Stuntz so powerfully demonstrates, stories are an especially important medium for sharing the phenomenon of experience. One of the many functions served by health narratives is that of connecting us to another’s physical and psychic interface with the world. We have discussed broadly thus far the multiple

31 functions that stories may accomplish. We have seen that stories are fundamental to meaning and identity; that stories serve as guides for behavior; and that at times of disruption stories provide a means for reestablishing a sense of continuity. We have also begun to consider how different organizational levels and differing spheres of influence require and produce different stories. Later chapters will discuss in greater detail how indoor tanning stories are created, shared and changed in order to persuade, confront or comfort. We will also examine the use of stories to accomplish identity and relationship functions. Given the value and power of stories it is understandable that the use of narrative will continue to be an appropriate methodological approach for descriptive and interpretive scholarship such as this.

CHAPTER 3: LIFE AND THE NARRATIVE IMPERATIVE

“Any ethic, whether social political, legal or otherwise, involves narrative” (Fisher, 1984, p. 3)

Narrative is imperative; and despite differences in philosophical orientations and academic conventions, narrative approaches provide scholars with understanding and insights into human relational behavior. Emerging from an era when social science dealt almost exclusively with quantifiable results and reproducible experiments, narrative scholarship continues to gain adherents and credibility. Here, I examine stories as a means of persuasion, and provide brief examples of narrative application across disciplines. It is not difficult to see parallels to indoor tanning stories and the story approaches being utilized in other disciplines. I am especially interested in approaches that provide schemas for considering the generative function of attributional stories.

These explanatory stories impact identity and behavior, which makes them especially useful when considering how health choices are made and changed.

Stories are our means of making sense of our experiences and empathizing with the experiences of others (Bruner, 2002a). As storytelling beings, our understanding and experience of the world takes narrative form. The breadth of stories’ utility is indicated by Fisher’s description of narrative as words and actions that, “have sequence and meaning for those who live, create, or interpret them” (1984, p. 2). He goes on to explain that, “the meaning and significance of life in all its social dimensions require the recognition of its narrative structure” (Fisher, 1984, p. 3).

What this underscores for me is that stories are not simply one aspect of communication they are essential for communication. We have long grappled with the

‘precise’ definition of communication, feeling that somehow research and analysis, and evaluations—all the things we do as scholars – would not be valid or appropriate without

33 such precision. How can we measure what we can’t even define? So we continue to try to define, and explain, and sometimes to argue: is it possible to ‘not’ communicate? Is a story different than a narrative? Do stories make you, or do you make stories? These questions have been asked by scholars who seek to understand the world, contribute to the scholarly discourse, and ultimately do good for humanity. After all, as Smith (2007) argues, research is a “theoretical, practical and moral matter” (p. 396). But I believe it is fruitless to conceive of narratives too narrowly or to ignore the insights from those with a different orientation, because despite our best definitions, stories won’t behave. Stories vitally shape communication; and storytellers intent on communicating will not remain static, will not be scripted or silenced. Stories can be big and small, private or social, permanent and changeable.

Narrative Scholarship, Differing Orientations

Writing a commentary on what was then the ‘current’ state of narrative scholarship, Smith (2007) noted that the field is rich with multiple perspectives, connections and similarities as well as tensions, differences and disagreements. Scholars favoring one orientation over another conceptualize narrative as discursive or cognitive, methodological differences may lead to approach narrative research in a systematic or formulaic way, while others may take a playful or interactive approach (Smith, 2007).

The one area of agreement is that there has been a wealth of knowledge produced by scholars from disciplines using narrative inquiry. Gergen and Gergen (2006) write that the last three decades have seen “an enormously rich, sophisticated and catalytic body of literature” (p. 112). Seeking to encourage theoretical considerations of narratives in action, they offer a brief overview of what they suggest are the three primary scholarly orientations toward narrative— narratives as cognitions, narratives as discursive action,

34 and something falling between the first two. This third orientation includes elements from the other two. Having this perspective involves recognizing relationships as the source of narratives, which are then incorporated into personal behaviors. The first theoretical orientation “narrative as a cognitive structure or schema” (p. 118) is described as the presumption that an individual acts in particular ways as a result of personal stories. The second, narratives as discursive action is based on social constructionist beliefs that meaning is derived socially. Because social reality is constructed, stories gain significance only in the context of relationships. The third orientation similarly views social interactions as the source of narratives, but allows for individuals to then appropriate and incorporate the narrative for personal use (Gergen & Gergen, 2006).

Gergen and Gergen describe three orientations, but in my opinion they compose two broader categories. These are the same two categories—cognitive narratives or discursive narratives – that to some scholars represent fundamental differences. For example, Gergen and Gergen (2006) argue that narrative is discursive action and that the social interchange is key. In contrast, Flannagan (2008) describes narrative as a cognitive process, with the keys being individual experience, mental structures and cognitions.

Bamburg (2005) admits to originally being part of the narrative as cognition camp. But he ultimately found the approach too constricting and moved away from what he calls the

“empirical domain” and into the discursive camp (p. 214). He points out that the differences in theoretical orientations toward the agent-world relationship can be thought of metaphorically as “being positioned” versus “positioning oneself” (p. 224). This idea is somewhat reminiscent of sociology’s agency vs. structure debates, which ultimately must be answered by structure and agency. Bamburg acknowledges that “One way to overcome this rift is to argue that both operate concurrently in a kind of dialectic as

35 subjects engage in a kind of narratives-in-interaction and make sense of self and others in their stories” (Bamburg, 2005, p. 224). This compromise seems sensible when one considers the capability of narratives to both describe processes and create processes, narratives that result in being positioned and narratives used for positioning oneself.

Kraus (2005) points out differences between narratology and social science and suggests that narratologists are concerned with the product, with the narrative itself, and that social scientists are interested in the process, the agent who narrates in a social context. For over thirty years scholars have discussed, argued and positioned themselves by attempting to clearly define narratives, their impact, and the conditions and contexts of their creation. After all these years the only things that are really clear are that narrative research remains a diverse field and that interest in narrative approaches continues to grow (Kraus, 2005).

I can understand those who feel that exacting definitions are necessary for

‘scientific’ research. Further, I appreciate the sentiment behind offering a model that

“systematically explicates the mental structures that underlie narrative comprehension” in order to provide a paradigm for “narratological research that respects the need for both disciplinary specialization as well as interdisciplinary collaboration” (Flannagan, 2008, p.

326). Describing the essential difference between these two approaches to narratives,

Edwards (1997) suggests, “Cognitive approaches treat them as expressions of how people understand things, whereas discursive approaches treat them as interaction-oriented productions” (p. 289, quoted in Abell, Stokoe & Billing, 2000). Regarding the variety of approaches and the theoretical, ideological and disciplinary conventions that are represented in the field, Denzin (2000) offers a view that seems to suggest that some of these boundaries are arbitrary, arguing that the individual and social are fundamentally

36 intertwined and that “everything we study is contained within a storied or narrative representation” (p. xi.)

I don’t see any need to choose a single correct approach among: personal stories that explain how we understand the world, social stories created in social interactions, and cultural stories that transmit implicit knowledge of norms and expectations. I am inclined to agree with Bamberg (2005) when he writes that the definition of narrative isn’t especially relevant for those who are interested in identity. I also endorse Freeman’s

(2001) suggestion that narrative inquiry is in the “post-polemical phase,” implying that a more profitable focus is on narrative’s great potential to “humanize and deepen” the work of social scientists (Freeman, p. 283).

Narrative Persuasion, Knowing your Audience

Rodden asks, “How do stories convince us?” Answering his own question, he suggests that it is because stories carry themes, and images, capable of invoking from their audiences not simply logical consideration but something more personal involving imagination and identification (2008, p. 165). When stories can transport listeners into the world of the storyteller, listeners are less likely to formulate counterarguments, and are more apt to change beliefs in response to their emotional identification with the storyteller and the unfolding of storied events (Green, 2006). Stories are central to persuasion because they are central to our existence, providing a means of combining our cognitive, emotional and sensory responses (Spector-Mersel, 2010).

This dissertation is a narrative examination of stories told by different groups for different purposes—to inform, persuade, support, create, and change. The designation of

‘narrative’ helps to describe the style and approach I use. Narrative is present in every aspect of this research—it is the object of inquiry, the method of inquiry, and the final

37 product of inquiry (Ewick & Silbey, 1995). Even though I am specifically focusing on narratives, it would be inaccurate to suggest that other types of research don’t include narrative elements. Similarly, although I have contrasted using and not using stories in advocacy, the truth is that any advocacy would be impossible without stories (Steiner,

2005).

The physicians I spoke with put considerable effort into their anti-tanning advocacy, and they understand this capacity of narratives. All of the physicians understood correctly what I meant when I used the term story. In fact, every person I interviewed, patients and physicians, understood that by ‘story’ I was referring to a more personal descriptive account rather than an argumentative or abstract logical account that contained mostly technical or statistical information. In response to my questions about how and why they used stories, physicians provided me with examples of the kind of moving patient narratives they told legislators, the reports of local events they shared with reporters, the motivational stories they used with patients in their offices, and the cautionary tales they delivered to anyone who would listen at school visits, or skin-check screenings. Dr. Brod explained that for him learning to become more effective as an advocate included learning to use more stories. Dr. Burkhart spoke earnestly to me about his conviction that stories were the best strategy for touching hearts. This is the reason he tells legislators about the young wife and mother who was his patient.

However, the truth is I believe that all research and all persuasion involve stories.

The language of those stories may differ a good deal, but they are stories nonetheless.

The appropriateness or effectiveness of any story depends of course on the audience. The old communication adage to, ‘know your audience’ is still crucial to successfully delivering a message. At a dermatology conference seminar on using advocacy to address

38 the indoor tanning industry, I heard a physician explain how much easier it had been for him to testify about tanning before a Food and Drug Administration (FDA) panel than to speak with legislators. The reason he gave was that the FDA panel was made up of fellow scientists. It stands to reason that using scientific language and speaking from a scientific perspective allowed him to tell stories to that FDA panel in a way that was both comfortable and familiar. Of course a story in this context might just be called by the more acceptable scientific term—a theory.

Stories serve a purpose, or multiple purposes, and in order to accomplish the purpose or to achieve the desired outcome, storytellers must deliver a story that will resonate with hearers. Cultural themes and structures provide a template for unique individual stories. Individual narrators, like the dermatologist speaking with fellow scientists on the FDA panel, adjust and shape stories to accommodate both the expectations and knowledge of audiences, and to fit circumstances and contexts (Bruner,

2002b; Mishler, 2004; Ochs & Capps, 1996). This fit between story and audience is important because for a story to resonate with an audience, the audience must recognize something in that story—something that matches their lived experience, or a frame of reference that demonstrates the story’s coherence and plausibility. In advocacy, the physicians used the official findings of the American Academy of Dermatology but they also tried to incorporate more personal elements that would move, persuade or convince their audiences. So did the lobbyists who were working on behalf of the tanning industry.

Physician advocates and tanning industry lobbyists told their stories to politicians, who then told stories to fellow politicians, to the press, and to constituents. The press retold those stories and individuals believed or ignored them…and on it goes.

Stories are Essential across Disciplines

In this dissertation, I am primarily focusing on the uses of narrative in medicine and advocacy, but the same reasons that make stories so important in those areas are the reasons they are important across disciplines. Stories, especially stories in response to changed circumstances, satisfy the ongoing human need to make sense of events and experiences. The same sequence of capturing stories, mindfully considering their substance, and weighing their efficacy for reaching goals that is used by attorneys, teachers, therapists and organizational consultants, is also used by individuals. These attributional and cognitive processes are the same ones individuals use to facilitate change, face fears, and take positive steps toward future plans. In much the same way melanoma patients restory their identities and their future plans, younger students are restorying in response to educational and attributional interventions. Constructing stories might be a common technique as part of the therapeutic process, but speaking about what you can do and what you will do as a means of increasing agency and control are just as empowering for patients navigating serious illness and chronic conditions.

Given the historic importance of stories and the power of stories to produce hope, one might assume that narrative resourcefulness would be a recognized component of communication competence, that storytelling would be generally regarded as essential and widely studied by students across disciplines. But inexplicably, this is not the case.

College offerings of narrative classes usually involve reading and writing about novels.

Certainly the study of literature is a valuable enterprise, but this categorization of narrative is too narrow. Why is a process so fundamental to human interaction and meaning making not acknowledged as a critical area of study? Why is storytelling too often absent from professional training and educational objectives?

Ewick and Silbey (1995) may provide an answer to that question. They write that social scientists and legal scholars abandoned narrative analysis in their quest for scientific certainty. Summing up the prevalent opinion of the time, influential sociologist

Read Bain wrote in 1935 that giving primacy to stories rather than numbers would result in a “bastard discipline” (Bain, cited by Ewick & Silbey, 1995, p. 198). Narrative was dismissed as too personal, ambiguous, and unreliable to be of use by scientists and scholars. But as Ewick and Silbey point out, those qualities are the very factors that make narrative so valuable in fields such as the social sciences and law. The very disciplines that seek to understand and explain human interaction are beginning to recognize the value of telling and listening to personal accounts. It may be that the current interest in narrative medicine, storytelling, and personal accounts is a response to the earlier tendency of reducing human interaction to logical formulas and decontextualized or impersonal descriptions. Narrative approaches to understanding the human experience can supplement scientific methods that have proved limited and at times inadequate for the task (Harter & Bochner, 2009).

Stories are influenced by behavior and biology, and behavior and biology are influenced by stories. Because stories themselves are diverse, even contradictory, it stands to reason that narrative inquiry is a very broad, very diverse field of scholarship and narrative scholars in fields such as law, education, psychology, and business, like scholars in communication and medicine, have much to contribute on the subject of the artful creation and ethical deployment of stories.

Narrative and law.

Reading about the use of narrative in the field of law, it is easy to recognize the correspondence to the use of narratives in political advocacy. Delgado (1989) reminds

41 readers of the Michigan Law Review that stories are a powerful means for “destroying mindsets.” These mindsets include the presuppositions and ideas that inform legal and political discourse. Calling stories the “oldest, most primordial meeting ground in human experience,” he sees storytelling as a valuable resource for empowerment and enlightenment. Those who are members of out-groups can use stories to gain voice and solidarity and as a means to confront oppression and shift paradigms. For in-group members, hearing stories can enrich reality and awareness by disabusing them of previously held attitudes or assumptions. Ultimately, stories produce empathy and humanize those persons perceived as other by providing a glimpse of their lived experiences (Delgado, 1989, p. 229).

French (1996) writes that stories have been used strategically to resist or confront, as a means of catharsis and empowerment. She admonishes her readers who are legal academics to consider the value of “studying, with empathy and through narratives, how humanism and normativity actually work” (French, 1996, p. 434). In truth, narrative has always been present in the law, stories of the impact of wrongdoing on a victim, stories about what happened or failed to happen from the perspective of the client, the accused, or an advocate speaking for the state. Attorneys tell juries carefully constructed stories; juries review and interpret stories as they make decisions. (Brooks, 2013; Bruner, 2002a).

Unresolved conflict often results in using the legal system as a final recourse.

Narrative approaches to conflict can provide a more satisfying outcome for litigants.

Problematic stories can be reframed to include mutual interests and future possibilities that had not been previously considered. Narrative practices are used in mediation with individuals, in the workplace, and more broadly with community-level dialogue or international conflict resolution (Gergen & Gergen, 2006).

Narrative and psychology.

What is true in law is true for psychology as well; stories have always been important. Counseling is a process of narrative change. Therapy involves some form of narrative, and the act of constructing viable new narratives is a therapeutic goal (Gergen

& Gergen, 2006). By constructing stories, individuals come to understand their experiences and themselves (Frank, 1993; Negele & Habermas, 2010). Constructing stories provides an opportunity to gain or regain a sense of control, by organizing events, memories, and emotions into a cohesive, narrative format. The need to understand one’s world results in a storied response (Pennebaker & Seagal, 1999). This storied response is at its core attributional in nature. According to Pennebaker and Segal, by incorporating difficult or traumatic experiences into stories, they become more manageable, increasing the possibility of successfully navigating the disruption. Pennebaker and others have studied the use of writing and speaking in therapeutic story construction and believe as a result that “regardless how narratives get formed, they serve a critical function in people’s lives that have important implications for health and general well-being”

(Pennebaker & Seagal, 1999, p. 1252).

Narrative and business.

Building an organizational narrative defines and transmits organizational values.

Narrative scholars have been quick to understand that metaphors and narratives provide important insights in the examination and change of organizational cultures. Narratives are intentionally created and captured in service to organizational goals. Business leaders are participating in story-based approaches, such as Appreciative Inquiry, to build positive themes, which provide a new story or new direction for the organization (Gergen

& Gergen, 2006). Thus, what works for individuals also works for organizations. If

43 stories, “create our current experience and sense of reality” (Cunliffe, Luhman & Boje,

2004, p. 272) organizations that are willing and able to build, revise, capture or celebrate organizational stories can impact and improve organizational processes. Revising organizational narratives in ways that change existing presuppositions is attributional intervention writ large.

In order to remain competitive, organizations need to value employees and encourage their engagement. Embracing a diversity of perspectives, and fostering creative behaviors from individuals and groups allows organizations to make the best use of human capital (Driver, 2001). Sharing, strategic alignment, expressions of care, and encouragement are communicative practices that increase perceptions of support, and they are being adopted by organizations seeking to foster an inclusive and creative climate (Driver, 2001; Eisenberger, Fasolo & Davis-LaMastro, 1990). Stories are essential for transmitting organizational culture. Increasingly, stories are being intentionally captured, coordinated and purposefully applied as a means for achieving organizational goals (Brown, Gabriel, & Gherardi, 2009; Czarniawska, 2011).

Organizations, like individuals, can use stories to produce desired actions, to reflect, respond and reify. And, like individuals, organizations can benefit by increasing their narrative competence and learning how to use stories ethically and productively.

Trainers from the organizational consulting company, On Your Feet (OYF) use a story plotter to help corporate clients relate stories to identity and action. The story plotter has four quadrants representing current and future stories, stories to be cultivated and stories to be discouraged. The quadrants are labelled as follows: stories of fact-currently aligned behaviors; stories of possibility-new ideas and changes; stories of contradiction- inconsistencies and failures; and stories of anxiety-fears and worries (Hirsch &

Robertson, 2005, p. 4). Stories of fact are about things that have already happened. They help to describe the corporate identity. The stories of possibility are aspirational and imaginative, stories that explore questions of “what if…?” Stories of contradiction capture discrepancies, allowing reconsideration of actions or beliefs that are inconsistent with stated goals. Stories of fear and anxiety make problems visible, and provide an opportunity to address fears and make necessary changes. The story plotter is a taxonomy that identifies narrative functions and provides a structure for collecting stories. Once collected, the stories are used to transmit culture, gather feedback, uncover weaknesses and generate action. By using the story-plotter, Hirsch and Robertson make it easier for organizations to make adjustments, to operate more effectively, and to “live their brands” more authentically (Hirsch & Robertson, 2005, p. 6).

Narrative and education.

Stories have also always been a part of education. What is different now is the acknowledgment that narratives are a credible means of scholarship, and the gradual understanding that, compared to the analysis of quantitative data, the process of telling, listening, or analyzing stories requires a different skill-set and mind-set (Carter, 1993).

As a professor of teaching education, Carter writes that stories have recently gained prominence in disciplinary research and noted the excitement that the movement toward stories has produced. She reports that in her own classes she is apt to tell a story about teaching rather than provide her students with quantitative data. Her reason is that stories capture a richness and complexity that is not possible to convey by other means (Carter,

1993). Like those in other disciplines, Carter recognizes that (a) stories provide a way of knowing that is meaningful and nuanced, and (b) stories are central to thinking, informing expectations, and providing a means for cohesion and coping (Carter, 1993).

Because stories enable the construction of mental schemas and allow new events to be incorporated into those mental models, and because stories are important for interpreting and reinterpreting events, for marking memorable events and for organizing information, narrative has always been a part of teaching, even if it has not always been acknowledged. Carter writes about the impact of personal and practical knowledge on truth claims, and the need for awareness when contending with issues of interpretation and power. Despite the fact that intentionally acknowledging stories as central to the study of teaching education will require some effort, Carter clearly supports the change

(Carter, 1993). The acknowledgment of narrative as a key element in the education of medical students and others training for health-related careers is also gaining traction, thanks in part to the important work of people like Rita Charon and Arthur Frank (Gergen

& Gergen, 2006; Harter & Bochner, 2009).

Describing narrative sensibility as valuable for “understanding and performing health and healing,” Harter and Bochner celebrate some of the ways that such capabilities might be experienced in the context of a medical encounter. The Journal of Applied

Communication Research devoted an entire issue to the subject of narrative medicine.

Writing the introduction to this special issue, Harter and Bochner (2009), provide readers with a preview of article topics. The broad array included narrative imagining, narrative theory and narrative ethics, narrative practices and narrative processes. These and other narrative approaches in medicine are a means to creating and crafting optimal treatment plans, enriching relationships, and providing attention and succor at times of disruption or distress (Harter & Bochner, 2009, p. 113).

The intentional use of narrative in education goes beyond teacher training and medical education. Some are recognizing the power of stories to shape students’

46 expectations, performance and sense of self. Similar to the idea that identity change happens as a result of a re-attribution or a changed story, educators are recognizing the creative power of stories. Martin Seligman, wondering if happiness could be taught, began teaching classes that focus on positive emotions and increasing optimism by sharing stories of gratitude and appreciation. He writes of the high student engagement and mature intellectual performances, and he notes “teaching this subject has been the most gratifying teaching I have done in my forty years as an instructor” (Seligman, 2004, p. 86).

Timothy Wilson is a psychology professor who suggests that the process of re- creating personal narratives and changing attributional ideas can help students who struggle with behaviors, or grades, or attitudes that aren’t working. Using the term,

“story-editing” to describe the process of changing identity by changing the story, in an interview for Scientific American, Wilson suggested that self-defeating thoughts and pessimistic thinking patterns can be changed by prompting individuals to reinterpret their personal stories. Wilson described an experiment he conducted using first-year college students who were not doing well academically. Randomized into two groups, one group was given information about how struggling students typically improved after a slow start. Video clips of older students explaining how they struggled initially but went on to be successful students reinforced the message. Later, these students did indeed improve, their grades were higher, and they were less likely to drop out than the students in the control group. The story change led to a changed expectation, and to changed behaviors.

(Cook, 2011).

Attributions, agency, and the stories we tell ourselves.

In the previous example, Wilson is training students to adjust their attributions regarding the reasons for their poor performance. An internal attribution, a belief that “I can’t do this because I’m not smart enough” can contribute to self-defeating behavior.

The new understanding that “lots of smart kids struggle at first, then they improve” re- frames the story and alters the results. In this case, an intact story was supplied by researchers, but clearly that is not always the case. Individuals can be taught to explain bad events in external terms, to change their explanatory or attributional style. Learned optimism frequently involves the cultivation of non-negative thinking, re-framing an adverse event, and looking for positive meaning. Re-framing a narrative can be an individual or a collaborative act, a performance of self or the product of partnering.

Whatever the circumstance, a positive, intentional choice to re-frame a less than optimal story, or to adjust a faulty attribution, is an accomplishment of empowerment (Breen &

McLean, 2010; Fredrickson, 2000).

Narrative sensibility involves imagining possibilities, recognizing choices, and believing that sometimes by defining situations differently, situations can be changed

(Harter & Rawlins, 2011; Oliver, 1996; Ricoeur, 1981). Editing or changing a negative story by re-framing it into a positive story that changes the trajectory of an outcome is an example of positive reappraisal (Fredrickson, 2000). An “attributional intervention” is a changed story, a new explanation for why things are the way they are. Consider the self- fulfilling prophecy, a phenomenon where individuals believe a particular story, and then enact the behaviors that lead to the expected consequences. Self-storied beliefs lead to behaviors that correspond to what is expected. Stories are powerful because a story

48 provides an expectation about what is and somehow the lived experience corresponds to that very expectation (Fredrickson, 2000; Kirby, 1991).

A changed identity can be the result of someone -- a teacher, parent or a physician

-- intervening in a way that changes the attribution or reasoning of a story. In the above example with students, story-editing happened in part, because of others’ input. This is why labels are so powerful. A label creates an expectation about behavior that can influence the way others view the labeled person, as well as shaping the self-story of the person who carries the label. But individuals can and do make changes to their own stories, and by doing so, individuals utilize an internal locus of control, and independent self-construal. Performing an act of self-definition can be empowering.

Reading about the utility of stories in the preceding examples from law, education, psychology and business, it is easy to find correspondence to narrative in medicine, and more specifically, in this re-telling of tanning stories. In law: stories are used to empower and enlighten, to shift paradigms, confront oppression, and to describe impact on victims. In education: stories capture richness and complexity; stories help us to interpret and organize; stories shape expectations, behaviors, identities, and attributions. In psychology: stories increase understanding, are an aid in gaining control, are used to construct and revise personal goals; and help individuals deal with disruption.

And in business: stories are used to transmit values, face fears, and plan for the future.

There are familiar echoes in every field about the humanizing capacity of stories and the dawning recognition that wherever there is a need for persuasion, cooperation, collaboration, or health, storied changes and attributional realignment provide predecessors of changed behavior.

In the process of sense-making, we seek out causes and reasons for our experiences. Attributional style, sometimes referred to as “explanatory style” refers to the causal explanations we have for the situations, events, and outcomes we experience.

Attributions may involve a variety of internal and external causes (Seligman & Peterson,

1984). Attributions, like all other perceptions, are shaped by the self-stories, or schemas, that constitute one’s sense of self. In the process of explaining the ‘how and why’ of any situation, an individual’s attributional choices are likely to be congruent with existing schemas. For example, if a girl thinks of herself as timid, when her friend suggests a trip to the tanning salon, she acts in the way she expects timid people to act—she doesn’t speak up or disagree. Later, when she explains to the doctor why she was tanning, she blames her friend, or a fixed internal cause—like being shy. Because she perceives that she can’t help being shy, this explanation relieves her of some degree of responsibility, but it also reduces her sense of personal agency and reinforces an interdependent self- construal. Describing what he refers to as bad faith narratives, Craib (2000) writes that some stories are not intended as real communication, or real examinations, but rather to convince listeners there were no choices, no possibilities of a different outcome. They are, “attempts to close down meaning and deny agency and the possibility of change that comes with agency” (p. 67).

Self-construal is a measure of boundaries, of independent agency—do I see myself as independent and able to make choices counter to those of others? Having an independent self-construal corresponds to an internal locus of control. Locus of control refers to the extent of personal control an individual believes he or she has over his or her life. An individual who feels that she has little control over her own life would be described as having an external locus of control, because external forces (like the friend

50 who decides to go tanning) guide her behavior. Positive attributional styles are often associated with an internal locus of control and more adaptive coping behaviors (Goli,

Scheidt, Gholamrezaei, Farzanegan, 2014). Individuals with a pessimistic attributional style are more likely to feel that there is nothing they can do to avoid negative events, leading to ineffective coping and reducing pro-active health choices (Sanjuan, Arranz &

Castro, 2012).

Attributional style, self-construal and locus of control are sometimes thought about as ‘fixed’ personality traits, but individuals make changes in these areas all the time. A Stanford study examined the impact of training on self-efficacy and health in chronically ill patients. The training in self-management and communication increased personal efficacy and improved health outcomes (Lorig, Ritter, Stewart, Sobel, Brown,

Bandura, Gonzalez, Laurent & Holman, 2001). Seligman implicitly addresses these attributional processes in his happiness classes by broadening student perspectives and focusing on their individual power to choose and create positive responses to life events

(Seligman, 2004). Attributional style and agency are pertinent to this discussion because one’s explanation for events, sense of personal susceptibility, and belief in the power to make changes all influence health behaviors (Helmer, Kramer & Mikolajczyk, 2012;

Hodges & Winstanley, 2012). These factors are pertinent because they shape the elements that contribute to self-stories -- and changing them involves the ability to imagine different “possible selves” (Cantor, 1990, p. 738). Imagining different selves is a storied process more likely to occur at times of transition, change, or disruption. In fact, recovery from a disruption or a crisis may depend in part on one’s ability to envision positive possible future selves (Cantor, 1990). What Cantor calls the imagining of “future selves” (p. 739) is self-definitional change, an identity change fashioned from a

51 consciously articulated story about future tasks and goals (Cantor, 1990). In much the same way the students in Professor Wilson’s class imagined their tasks and goals—they could be successful, they would be successful, before they accomplished the changes. In the hypothetical example of the shy tanner, she might imagine herself telling her friend she will no longer join her when she goes tanning. She might imagine how proud she will be to tell her dermatologist about her resolve not to tan anymore. In this case, imagined tasks include a willingness to stop blaming “shyness” or her friend and accept responsibility for her choices, thus demonstrating her strength and resolve in achieving her goal of staying cancer free.

Attributional realignment involves a willingness to consider reformulation of causal stories, letting go of the need for attributions that are extrinsic, and the deconstruction of rationalizations that were crafted primarily to protect one’s ego.

Attributional realignment means the development of alternative explanations that are plausible, and that serve the identity and sense-making needs of those involved (Sahin &

McVicker, 2009). Another significant benefit of attributional realignment is that dysfunctional attributive processes, such as learned helplessness, can be replaced with healthier attributional beliefs (Volpe & Levin, 1998). Attributional stories are linked with identity because attributional stories are used when accounting for oneself, one’s choices, and one’s reasons for choosing one course over another (Ott-Anderson & Geist-Martin,

2003; Horton-Salaway, 2001).

Narratives and change.

I have included this discussion of attributional style because I am convinced that the stories we tell ourselves and others about the causes of negative events in our lives matter. We are indeed story-telling beings, and the stories we formulate are impacted by

52 our thoughts/emotions/learning/relationships/biology/experience and a dozen other variables. How much each of those elements matter, and in what circumstances or contexts they matter, are questions not easily answered. Scholars who seek to understand narrative in the construction of meaning and identity sometimes struggle to define and determine what matters and what doesn’t. Despite difference and disagreements, the accumulated wisdom represented by contributions from a variety of scholars has enriched the field. I have learned from them and from my own experience that the process of intentional story production begins with consciousness, imagination and language.

Realities are conceived, shaped, and reflected in language that is shared. Seale (2000) writes that we define ourselves by telling stories, pointing out that in acts that are routine and taken for granted and in fateful or extraordinary moments of change, narrative is “a pervasive feature of human social life” (p. 46).

Denzin writes about the future of narrative as a field of study by reminding readers that we need new ways of being, knowing and performing, and that we need new stories that will encourage and drive us to action (Denzin, 2000). Being driven to action is the essence of persuasion, and stories are key to persuading others and key for persuading ourselves. As we have seen, there is a growing acknowledgment of the utility of narratives and ample evidence that changed actions are often preceded by a changed story. By changing the story through intentional behaviors like renaming, reframing, or re-describing, one can set about developing new story lines (Shapiro & Ross, 2002).

However one defines narrative, whatever one’s theoretical orientation or philosophy of cognition, it is evident that new story lines can make all the difference.

CHAPTER 4: ORGANIZATIONAL NARRATIVES: SETTING THE AGENDA AND

THE INDOOR TANNING FRAMING WARS

“Whoever tells the best story shapes the culture” (McManus, cited by Vanadia, 2013)

“It is increasingly important to employ a messaging campaign that can cut through the clutter and reach your intended target” (John Overstreet, ITA Executive Director)

Moving from theoretical discussions of narrative and persuasion, we will now examine how two organizations craft tanning stories for various audiences. By referring to these organizational stories as meta-level narratives, I hope to illustrate how the stories generated at this level are different from yet similar to meso-level stories, and how they trickle down to inform and influence micro-level personal stories. Discussing specific examples of areas of contention and controversy at the meta-level—the health effects of

UVR exposure, the need for vitamin D, and the appropriate level of government oversight--will provide readers with background knowledge of three topics, important in the national debate regarding indoor tanning. Examining organizational narratives will also allow for a comparison of each organization’s rhetorical choices.

The tanning industry understands who the audiences are for their various messages, and they are adept at crafting them accordingly. The meta-level narratives from the tanning industry about the “natural” process of tanning, the importance of vitamin D, and the value of parental choice, are not aimed at their actual customers, but rather at gatekeepers and policy makers. For the most part their customers are tanning for the appearance benefits they believe they gain. Imagine the response from legislators if the argument from the ITA actually included a realistic description of the primary motivating factors for customers—they think they look sexier and slimmer with a tan, or

54 they don’t want to look pale in a prom dress. I believe that the need to craft a message for this secondary audience has led to the production of most of these meta-narratives. Once created and disseminated, they have had an impact on shaping the views of advocates and informing the ensuing meso-level narratives. These narratives of vitamin D and small business rights also function as a straw man, a distraction from a cost-benefit analysis of health impacts and the desire to appear tan. Fighting on behalf of the rights of female small business owners seems a much worthier cause than fighting for the right of teen girls to be exposed to cancer-causing radiation because a tan makes them feel more attractive.

Kathleen Doheny refers to the “great summertime tanning debate” in a WebMD feature article titled Tanning Myths: What’s True, What’s Hype? She describes the aggressive ad campaigns sponsored by the Indoor Tanning Association and the dire warnings from melanoma research groups as a battle between giants. Her concern, and the reason for writing the article, is that in view of these conflicting claims, consumers are left confused about what is true. This debate between the ITA and the melanoma researchers is typical of organizations that make up two opposing poles in a contentious public conversation regarding the risks and benefits of tanning. Using supporting evidence and expert claims, each side seeks to persuade various audiences and to dominate in a framing war (Doheny, n.d.).

Doheny’s metaphorical description of a battle is appropriate. This is a battle and at stake are resources of time, money, and lives. And although this is a serious and consequential contest, it is a contest that is difficult to score given the complexities of the issue, the multiple audiences and the various stakeholders. Consider the following trends; do they indicate progress for one side, failure, or mixed results?

 Indoor tanning has grown significantly over the past 25 years (I T A, a).

 People are increasingly aware of the dangers tanning beds present

(Hawaleshka & Righton, 2005), but this knowledge has not resulted in a

reduction of tanning (Reynolds, 2007).

 The “tanning mom” received a great deal of public censure because of her

tanning excesses (TMZ, 2013). But, tanned celebrities are routinely

photographed and admired for their appearances (Heckman, Egleston,

Wilson & Ingersoll, 2008).

 More and more states are enacting laws that restrict, to a greater or lesser

degree, access by minors, but as of this writing, there are 15 states that

have no restrictions whatsoever on tanning (National Conference of State

Legislatures, 2013).

In this contest, despite the definitional difficulties, dermatologists and others who battle to eliminate indoor tanning are energized by their goal. Individuals’ motivations may vary but certainly physicians are working for health and saved lives. Despite the accusation that dermatologists are simply seeking to increase profits, common sense dictates that if these doctors were in it for the money, more cases of skin cancer, rather than fewer, would be their goal. For every physician I have spoken with, the real evidence of success in this battle, the hoped-for outcome will be fewer people visiting tanning salons and a marked reduction in the number of new skin cancer cases.

Meta-Level Stories: Opposing Narratives

Many organizations and agencies have developed a position regarding the dangers of indoor tanning but the American Academy of Dermatology (AAD) will be my focus.

According to the AAD website, the organization is committed to “advancing the

56 diagnosis and medical, surgical, and cosmetic treatment of the skin, hair and nails; advocating high standards in clinical practice, education, and research in dermatology; and supporting and enhancing patient care for a lifetime of healthier skin” (AAD, 2010).

The Indoor Tanning Association (ITA) will be my primary source of representative arguments for tanning. According to the website, the ITA represents

“thousands of indoor tanning manufactures, distributers and facility owners and members from other support industries.” The webpage describes their position as “promoting a responsible message about moderate tanning and sunburn prevention.” Also included on the ITA homepage is a warning, mandated by the FTC, which reads “Notice: You do not need to become tan for your skin to make Vitamin D. Exposure to ultraviolet radiation may increase the likelihood of developing skin cancer and can cause serious eye injury.”

Immediately below this warning are links to the following publications: Solar Power for

Optimal Health, The UV Advantage, and The Vitamin D Solutions (ITA, b).

Although I am primarily focusing on the American Academy of Dermatology and the Indoor Tanning Association, it is important to emphasize that many other groups, associations and organizations are engaged in the public debate. And while each “side” in the debate may be characterized generally, there are variations and disagreements among parties who are ostensibly on the same side. It is difficult therefore to suggest that these organizational narratives are codified, comprehensive, or even clearly defined. It is possible, however, to gain an understanding of the core issues and to assess the credibility of the various claims made by each organization considered here.

Both the AAD and the ITA maintain websites that provide multiple examples of organizational narratives related to tanning. These websites provide the public with examples of the academic and legal claims that these organizations use to frame issues

57 related to tanning. Websites, ads and printed materials are vehicles for telling persuasive stories. They also provide insight into the specific arguments and rhetorical choices of an organization. Examining the written discourse from these organizations can help to provide a sense of the tone and techniques that are employed in their efforts to persuade various audiences.

A good place to start comparing the opposing organizational narratives is with core issues and themes. These include: the risks and benefits of exposure to Ultra Violet

Radiation (UVR); the body’s requirement for Vitamin D; and the appropriate role of government oversight of tanning parlors. It is beyond the scope of this paper to fully develop these arguments. I will however use AAD and ITA sources to briefly summarize the organizational positions.

The Risks and Benefits of UVR Exposure

Multiple studies have confirmed the association between UVR and skin cancer risk, and the Skin Cancer Foundation has used compiled research data to create skin cancer fact sheets that are available on their website (www.skincancer.org). The fact sheets include these two strongly worded statements regarding UVR exposure,

“Ultraviolet radiation (UVR) is a proven human carcinogen” (US Food and Drug

Administration, 2009). The second statement references a report by the International

Agency for Research on Cancer (IARC). This group was tasked by the World Health

Organization to investigate the carcinogenic risk of UVR and indoor tanning. The Skin

Cancer Foundation quotes the findings of this influential IARC report. “The International

Agency for Research on Cancer, an affiliate of the World Health Organization, includes ultraviolet (UV) tanning devices in its Group 1, a list of the most dangerous cancer-

58 causing substances. Group 1 also includes agents such as plutonium, cigarettes, and solar

UV radiation” (El Ghissassi, Baan, Straif, Grosse, Secretan, Bouvard, & Cogliano, 2009).

David E. Fisher, MD, PhD, Chairman of Dermatology and Director of the

Melanoma Program at Massachusetts General Hospital at Harvard Medical School, believes the evidence that links UV exposure to melanoma is indisputable. Additionally, he notes that there are numerous research studies that support the correlation between UV exposure and an increased risk for melanoma (Doheny, n.d.). Within the house of medicine there is broad support for the contention that UVR exposure increases the risk of developing skin cancer. In addition to the AAD, the Centers for Disease Control and

Prevention, the Department of Human Services, the World Health Organization, The

American Academy of Pediatrics, and the American Medical Association all recognize the danger and discourage the use of indoor tanning equipment (Loh, 2008).

The ITA website (www.theita.com) includes an FAQ page that explains their organizational position on these same topics. Regarding UV exposure (the ITA does not typically include the word ‘radiation’ in their documents), the ITA states, “in the course of this public debate, we believe that the risks associated with UV light have been overstated and the benefits ignored.” According to the ITA, their “scientifically supported” position is that “moderate tanning, for individuals who can develop a tan, is the smartest way to maximize the potential benefits of sun exposure while minimizing the potential risks associated with either too much or too little sunlight” (ITA, c). The ITA claim is that the “physiological and psychological” benefits of UVR outweigh the “easily managed” risks of sunburn and overexposure. Additionally, they note that future potential benefits are likely to be discovered “pending further research” (ITA, c).

The Need for Vitamin D

Vitamin D is sometimes called the sunshine vitamin because it forms in the skin as a result of UV exposure. The vast preponderance of health claims being made in support of indoor tanning involves vitamin D. The AAD position statement on vitamin D suggests that adequate amounts of vitamin D should be obtained through a healthy diet, including foods with naturally occurring vitamin D (fish, eggs), foods enriched with vitamin D (milk), and if needed, a dietary supplement. Due to the cancer risk, the AAD statement includes a caution against obtaining vitamin D through unprotected UVR, either through exposure to the sun or tanning beds.

In order to address the ITA claims regarding the danger of insufficient vitamin D, the Academy statement cites a review conducted by the National Academy of Science

Institute of Medicine (IOM) that investigated the link between vitamin D and health problems. After reviewing over 1,000 studies and listening to expert testimony, the IOM conclusion was that while vitamin D was strongly related to bone health, evidence linking vitamin D to other conditions was inconclusive and “insufficient to inform nutritional requirements” (AAD, 2011).

Like most chemical interactions within the body, the exact processes can rarely be reduced to a simple description of cause and effect. A deficiency of vitamin D can cause bone disease in children and adults but in such cases the vitamin D level is related to dietary calcium ingestion and absorption. It is often correlated to thyroid function as well.

People most at risk of being vitamin D deficient are: dark-skinned, elderly and/or obese.

Vitamin D insufficiency is another matter. Vitamin D levels for a majority of people in the U.S. will be higher in summer and lower in winter. This insufficiency, often referenced by the ITA, is rarely indicated in disease and readily addressed through dietary

60 means or with a multi-vitamin supplement. Calling Vitamin D insufficiency a “debatable epidemic” the physicians who wrote this article warn that too much vitamin D may be toxic. They argue that given the health risks of UV exposure and the relatively low cost of vitamin supplements, diet and dietary supplements are the only safe and cost-effective ways to obtain vitamin D (Mendese & Gilchrest, 2012).

According to the National Dairy Council, a cup of milk provides 25% of the

USDA’s recommended daily amount of vitamin D (National Dairy Council, 2009). This seems to contradict the claims on the ITA website that “moderate exposure to sunlight is the only way to help the body manufacture the vitamin D it needs. “ In fact they claim it is “almost impossible” to adequately address one’s need for vitamin D through diet. In a question and answer format the website addresses several disputed topics. In an answer about vitamin D, the claim is made that one would need to drink 10 glasses of milk every day in order to meet the recommended requirements “without the benefit of sunlight”

(ITA, d).

The caveat “without the benefit of sunlight” is important because the sun is a factor in a photosynthesis process. Even the AAD acknowledges the assumption of minimal sun exposure. However, there is disagreement about how much sun exposure is needed. Sherrif Ibrahim, M.D., Ph.D., a dermatologist who specializes in skin cancer, in an article on pro-tanning hype and vitamin D, suggests the amount of sunlight needed is minimal. According to Dr. Ibrahim, simply walking from the car to the supermarket provides adequate sunlight. He also calls the pro-tanning lobby negligent for recommending a known carcinogen when healthy alternatives are readily available (Skin

Care News, n.d.).

Michael F. Holick M.D., Ph.D., is an endocrinologist and researcher who writes extensively about the serious consequences of Vitamin D insufficiency. Holick has also been a vocal critic of the IARC report and of physicians who warn about the dangers of tanning. In 2004, The American Journal of Clinical Nutrition published an article Holick co-authored. In that article, the authors concluded that chronic tanning might provide health benefits due to an increase in vitamin D (Tangpricha, Turner, Spina, Decastro,

Chen, & Holick, 2004). Martin Weinstock, a dermatologist from Brown University, and

DeAnn Lazovich, a cancer epidemiologist and professor at the University of Minnesota, responded to the Journal of Clinical Nutrition to express their disagreement. In their letter to the editor Weinstock & Lazovich stated their concerns about the article by

Tangpricha, et al. on tanning and vitamin D, which had been published in a recent issue of the journal. Their first disagreement was with the article’s claim that “tanning beds may also provide some medical benefit.” Weinstock and Lazovich went on to list several other concerns and closed their letter with this indictment:

The investigators imply that artificial tanning lamps may be useful for improving

vitamin D status, but they downplay their carcinogenicity. Artificial tanning has

been linked to multiple types of skin cancers. Oral vitamin supplements are a

safer, much less expensive, and more convenient method for improving vitamin D

status …the authors of the article acknowledge having received support from the

UV Foundation for their work, and the senior author is a consultant for this

foundation. However, the authors failed to note the close connection between the

UV Foundation and the commercial tanning industry. Were the readers aware of

this close connection, they might infer that the implicit endorsement of tanning

parlors in this article is related to the authors’ financial connections with the

commercial tanning industry (Weinstock & Lazovich, 2005).

Firing back, Holick and Tangpricha responded to the Weinstock and Lazovich letter writing “it is remarkable that some persons in the dermatology community, including Weinstock and Lazovich, are oblivious to the multitude of publications that have clearly shown vitamin D deficiency to be epidemic in the US population” (Holick &

Tangpricha, 2005).

Holick is no stranger to controversy over his views. When The Washington Post

(Stein, 2004) published an article on vitamin D, they included several statements from

Holick indicating that vitamin D deficiency is a huge problem and recommending increased sun exposure. The Post also included comments from dermatologists. Dr.

Spencer, vice-chair of dermatology at Mt. Sinai School of Medicine suggested Holick incorrectly viewed vitamin D as a “magic bullet,” a theory that was unsubstantiated by research findings. The other comment came from a researcher at Holick’s own school,

Boston University. The chair of dermatology at Boston University School of Medicine,

Barbra Gilchrest, asked Holick to resign over his controversial views and the fact that he receives funding from the indoor tanning industry, “He has, in my opinion, an enormous conflict of interest that he refuses to acknowledge.” According to the Post article, Holick admitted he received funding from the ITA, but claimed it came with no strings attached.

He refused to resign and responded with “The dermatologists get a lot of money from the sunscreen industry and no one ever questions them about that” (Stein, 2004).

The Appropriate Role of Government Oversight

Indoor tanning is regulated at the local, state and national level. This does not mean that there is a great deal of government oversight or compliance from salons. The

AAD and other agencies and individuals have expended a great deal of effort and expense in their attempts to strengthen regulations at every level (Suarez, Dellavalle &

Robinson, 2012). Much of the individual advocacy work that the physicians I spoke with engaged in involved working with state legislators to pass bills reducing access by minors.

The Food and Drug Administration (FDA) regulates the emissions of tanning lamps and requires salons to provide eye-protection and to post warning labels. The FDA also provides manufacturers and salons with recommendations regarding maximum exposure. These minimal regulations are only sporadically enforced. One study involving research personnel posing as tanning salon customers in 116 cities, reported 11% compliance with FDA guidelines (Suarez, Dellavalle & Robinson, 2012). One reason for relatively few regulatory demands has been the FDA’s classification of tanning lamps. At the time of this writing, tanning beds are classified as a Class 1 medical device. Other medical devices in this category include bandages, gauze, and tongue depressors. At the federal level, the FDA is responsible for safeguarding public health. In lieu of the fact that multiple studies have found that tanning beds increase the risk of cancer, this Class 1 designation seems inappropriate (Carol, 2011).

The finding of the International Agency for Research on Cancer (IARC) is being used to argue that FDA oversight needs to be strengthened to response to the cancer threat that indoor tanning poses. The IARC uses the following scale to classify carcinogens: level 4, lack of carcinogen; level 3, carcinogen is possible; level 2, carcinogen is probable; and level 1, carcinogenic. Tanning beds, like cigarettes, have been classified as level 1 (Lim, Conference Presentation, 2013). In light of this classification and significant evidence regarding the danger, the AAD, along with other

64 agencies, have argued for a more stringent classification from the FDA (AAD, 2010).

These efforts seem to be paying off. In May of 2013, the AAD announced that, given the dangers, the FDA was proposing a change to Class II, with stricter oversight. The

American Academy of Dermatology Association (AADA) is the advocacy and policy organization of the AAD. Dirk Elston, president of the AADA, called the move an important first step adding “we recognize that there is still more work to be done to protect the public from these dangerous devices” and urging a prohibition on the sale or use of tanning beds by minors (AADA, n.d.).

The Federal Trade Commission (FTC) is another federal agency that has had cause to enter the fray. The FTC protects consumers by investigating false or misleading advertising claims. The ITA was prohibited by the FTC from continuing to make false claims in their advertising regarding any health benefits from tanning (AAD, 2012). Due to the FTC ruling, salon employees are sometimes cautioned against making misleading claims. An online training program for “basic tanning certification” lists the following as examples of what not to say when selling tanning sessions to a customer:

“You can achieve a deep year-round tan with safe ultraviolet light.”

“No harsh glare, so no goggles or eye protection is necessary.”

“Tan without the harmful side effects associated with natural sunlight.”

“No danger in exposure to ultraviolet light.”

“Our tanning beds help relieve the pain and discomfort of psoriasis.”

Instead, salon workers are instructed to say positive things about tanning without mentioning health benefits. Examples of positive statements that don’t violate the FTC ban include:

“Indoor tanning offers a predictable tanning environment controlled by timers that

ensure the accuracy of your tanning session.”

“You can achieve a beautiful year-round tan in the comfortable setting of our

tanning salon.”

“Our staff will evaluate your tanning potential using a skin typing chart that

determines the most productive tanning session available.”

“Achieve that beautiful golden tan at our salon rain or shine.” (National Tanning

Training Institute Training Manual, 2009, pp. 32-33).

Unfortunately, many salon employees don’t receive even minimal training, and even when training is provided it may have little impact on the actual claims being made by tanning salon employees. An investigation of tanning salons by the U.S. House

Energy & Commerce Committee found that nearly all of the salons that were contacted denied the known risks of tanning, and “4 out of 5 salons falsely claimed that indoor tanning is beneficial to a young person’s health” (Connolly, 2012).

State-level efforts have often focused on legislation regulating tanning bed access by minors. Some states place no restrictions on access; some mandate parental consent or a prescription by physicians; a few ban anyone under a certain age from using tanning beds. Dermatologists continue to work with legislators to introduce or re-introduce bills that will restrict tanning bed use. Dermatologists working in advocacy roles are cautiously optimistic that the growing body of evidence linking tanning to cancer will convince lawmakers to join other legislators who represent a steadily growing group of states that regulate tanning (AAD, 2011). Even when there are regulations in place, compliance at the state and local level is often lacking. Oversight is sporadic or non- existent in many cities. When state and local health officials from 28 states were

66 surveyed, 32 % of cities did not conduct any inspections of tanning salons, and another

32% conducted inspections less often than once a year. Fewer than 50% issued citations to salons that violated state laws (Woo & Eide, 2010).

Despite problems with regulatory oversight, many organizations in addition to the

AAD still support legislative action. An article published on the webpage of the

American Academy of Pediatrics (AAP) contained unequivocal support for prohibiting access to minors, stating that the AAP joins with other physicians to strongly recommend that minors under 18 should be banned from tanning (Balk, Fisher & Geller, 2013). The

ITA issued a press release in response to this AAP statement claiming that the AAP was misleading the public by implying there is consensus about the relationship between UV exposure and melanoma, when, according to ITA, there is no consensus (ITA, 2011).

Like the AAD, the ITA tracks legislative activity (Appendix F) and “actively lobbies against legislation that would place unfair restrictions on salon businesses” (ITA, e). The ITA also sponsors a Political Action Committee (PAC) allowing for participation in the electoral process in order to “educate and make financial contributions” to candidates who support the policies important to the ITA membership (ITA, f). On the

ITA website, a list of 2013 current and pending state bills related to indoor tanning is available. Listed by state and bill number, most involve under-18 bans. Of the 48 bills approximately half are noted to be “dead”, “dead for 2013”, “died in committee”, or

“vetoed by governor” (ITA, g).

Trickle Down and the Public Conversation

Tanning behaviors are influenced by many factors, and “experts” are not the only ones with opinions that influence others. Because personal beliefs are not developed in a vacuum, when seeking to understand the basis for personal beliefs, it is helpful to have an

67 overview of organizational narratives related to indoor tanning. “Trickle down” from the organizational narratives refers to the concepts and claims from these meta-narratives that are likely to show up in some form in the personal narratives of patients and physicians.

In addition to trickle-down, beliefs about tanning are also generated through media portrayals, peer-group norms, social relationships, and personal rationalizations

(Shoveller, Lovato, Young & Moffat, 2003; Hoerster et al., 2007; Poorsattar & Hornung,

2008). These implicit and explicit stories are arguably as important to everyday health and behavior choices as expert advice. Below, I use an extended, real-life example to illustrate the multiplicity of voices and ideas surrounding tanning. The following are excerpts of public responses to an online, popular press article about the addictive properties of tanning from The New York Times. While only a tiny fraction of the larger cultural conversation, these comments still reflect the myths and medical misinformation, the contentions, claims and concerns that characterize tanning narratives.

In a popular press article provocatively titled “Is Indoor Tanning Addictive?” the author, Parker-Pope (2010) referenced research by Mosher & Danoff-Burg (2010) that indicated a small percentage of people are physically addicted to indoor tanning. I found the 58 comments written in response to this article especially interesting. The comments provided a remarkable sample of the range of tanning stories currently being repeated, believed, debated and defended as part of the larger societal conversation regarding tanning. Hoping to shine some light on the contested terrain, I have selected a dozen people who posted comments in response to this article. I am including a few excerpts from their comments, along with the respondent’s online moniker, as an introduction to the contested claims that surround tanning. I include some brief observations and commentary, and in a few cases some additional background information. Here, we get a glimpse of the “trickle

68 down” as organizational storylines are repeated and reiterated in a public, popular press forum.

This representative sample includes the following individuals, grouped into 6 general categories:

 Tanning Salon Owner (Electric Sunshine)

 Tanners (Mr. Joshua, Bethany, Vicki)

 Anti-Tanning Sympathizers (Talbot, Robert Latkany MD, Shutup)

 Pro-Tanning Sympathizers (Monica Jones, D.L. Smith, William B. Grant

Ph.D.)

 Former Tanners (Grancel Fritz, Shelly)

 The Others…

Tanning salon owner, (Electric Sunshine).

Electric Sunshine begins her response with an admonition to the author to “do more research …and drop her bias” if she expects anyone to take her advice on health.

Electric Sunshine argues that it is clear that medical professionals don’t really believe tanning is dangerous because dermatologists and The American Cancer Society have meetings in Florida and the Bahamas. The author of the New York Times article cited a claim made in the original research that out of the 421 college-aged study participants,

“100 percent of them said they believe they can get skin cancer from tanning beds or booths, but it doesn’t prevent them from spending time using them” (Danoff-Burg &

Mosher, 2010, cited by Parker-Pope). This statistic doesn’t convince Electric Sunshine who calls the claim laughable because in her words “100% of people never agree on anything.”

Tanners, (Mr. Joshua, Bethany, Vicki).

Most of the tanners who responded to this article agreed with the contention of the researchers that, in addition to the benefit of tanned skin, people use tanning beds because exposure to ultraviolet light feels good. Mr. Joshua began tanning because he was concerned about his blood level of Vitamin D. He admitted that despite starting for

“health reasons” he found himself going more often simply because it was enjoyable. In

Bethany’s response she suggests that the author should stop posting “over dramatic statements.” She explained that tanning makes her both look better and feel better.

Bethany, who is passionate about her subject, writes “I don’t care if my skin is gonna look like leather when im older I look good now and thats all that matters” Sadly, this sentiment is all too common among young tanners (Cafri, Thompson, Roehrig, van den

Berg, Jackobsen & Stark, 2006). Vicki sums up her feelings about tanning succinctly “I love tanning!”

Anti-tanning sympathizers (Talbot, Robert Latkany MD, Shutup).

Interestingly, in this category and especially in the Pro-tanning category, the organizational narratives are represented but not always acknowledged as such. Talbot discussed lobbying efforts for FDA reclassification and cited the AAD data regarding the incidence of melanoma. He closed his comment with a line from an AAD ad campaign

“One American dies of melanoma every hour.” My Internet search led me to believe that

Dr. Latkany, is an ophthalmologist. He indicated surprise that the articles didn’t spend more time on skin cancer risks. He included a link (now defunct) to an article detailing the lack of tanning industry regulations. One of my favorite responses from this category came from someone who simply signed the post Shutup. This post was brief but erudite and I include it here in toto:

to D.L. Smith and James Butler and any other one of you loons from the

ITA and its affiliates, SHUT UP…your defending a form of vanity that

KILLS PEOPLE. It causes CANCER. You would rather churn your

profits and line your pockets while people die. Shame on all of you.

STOP DEFENDING DEATH

— SHUTUP

Pro-tanning sympathizers, (Monica Jones, D.L. Smith, William B. Grant

Ph.D.).

Members of this group repeat the claims of the organized, pro-tanning lobby although none of these people mentioned any affiliation with the Indoor Tanning

Association. Their responses were often lengthy and included challenges to the veracity of the researchers’ conclusions. They also repeated claims about the benefits of Vitamin

D. Along with Shutup, I suspected that these particular responses were not simply the work of interested lay people and an internet search confirmed my suspicion. Additional information is included at the end of this extended example in the section titled

“Background Research: A Little Sleuthing.”

Monica Jones writes that the suggestion that tanning is addictive is not only incorrect but that it “cheapens the legitimacy of concern over real issues involving addiction.” She says that what is really happening to tanners is not an addiction to something dangerous but rather an “attraction” to something that is good and healthy. She argues that we are designed by “Mother Nature” to be attracted to UV exposure, thus insuring an adequate supply of Vitamin D. She goes on to suggest that tanners have optimal levels of Vitamin D and non-tanners do not. In classic rhetorical style, Jones closes her

71 lengthy post with 2 points. The first calls into question the legitimacy of the science used to demonstrate the harmful nature of tanning beds. She writes,

“There is not one single study anywhere in the world showing that UV exposure

in a non-burning fashion is a significant risk factor for skin damage. Indeed, there

is no study in existence that has isolated and asked that specific question.”

Her closing comment casts aspersions on the motives of those who oppose tanning,

“Keep in mind that billions of dollars are made telling you to avoid the sun – much more than will ever be made by the small businesses who offer professional indoor tanning services.”

Former tanners, (Grancel Fitz, Shelly).

After spending years as a “tanorexic” and two stints in rehab, Grancel Fitz has no problem believing tanning is addictive. Despite this history, Fitz is called too pale by

“friends” who are seemingly clueless. Shelly writes that even though tanning felt good, it was not worth being diagnosed with melanoma at 31. She notes that her physician, a melanoma specialist, mentioned his shock at the number of young women coming in with carcinogenic lesions.

The others.

The other responders run the gamut in terms of attitudes toward tanning. Some write reacting to the concept of addiction, some admit to tanning, while others say they would never tan. I suspect that there are several posts from people who are affiliated with tanning in some way. Like the comments from Jones, Smith, and Grant, these postings repeat ITA talking points about Vitamin D, the “natural” process of tanning, and the belief that anything in “moderation” is safe. Some suggest tanning is a relatively benign

72 activity compared to other risky behavior. There are also familiar complaints about the research being “inconclusive” and accusations that warnings about the dangers of tanning are nothing more than a scare campaign that has been concocted by the medical establishment as a money making scheme.

Background research: A little sleuthing…

First, a disclaimer, I can’t be certain the names that turned up in my search belonged to the comment writers. An Internet search of the name “Monica Jones” plus the words “indoor tanning” led me to an article in the Texas Legal Newsline. The

Attorney General of Texas filed an injunction against San Antonio-based Darque Tan franchise, Tan Biz LLC, and its owners, Monica and Jason Jones. They were fined and prohibited from engaging in illegal marketing after an investigation revealed that an unlawful ad campaign “improperly claimed that customers at its 60 indoor tanning facilities would benefit from increased Vitamin D levels — which the company said would reduce cancer risks” (Karmasek, 2013).

In his first and second postings, D.L. Smith argues that the work of the original study authors, Danoff-Burg and Mosher, should be dismissed out of hand due to the fact that tanning addiction is not listed in the DSM-5. Smith suggests that if their research were really “important,” these two psychologists from the Department of Psychiatry and

Behavioral Sciences at Memorial Sloan-Kettering Cancer Center would not have chosen to be published in “a journal read by skin doctors who have no expertise and/or experience dealing with mental health issues.” Smith complains that these researchers, who were studying tanning addiction, failed to take into account the fact that the

“incontrovertible benefits of controlled ultraviolet radiation exposure, i.e., stimulating the cutaneous production of vitamin D and the development of photo-protective facultative

73 pigmentation (a.k.a. a “tan”) far outweigh the minimal and manageable risks involved.”

Smith’s third posting argues that cancer strikes those who are “genetically predisposed” and that the “sun scare warnings” are damaging to the general population who are missing out on the benefits of Vitamin D. In the fourth and final posting, Smith writes that “for every one person who dies prematurely each year (in the USA) because of the adverse effects of overexposure to UVR, 500 to 1,000 people die prematurely each year because of the adverse effects of underexposure to UVR.” According to Smith, the costliest medical problem in the United States, and the world, is Vitamin D deficiency.

The remedy is “controlled ultraviolet radiation exposure;” in other words, indoor tanning will solve one of the world’s greatest health problems.

William B. Grant Ph.D. also touts the benefits of Vitamin D in his two posts. He informs readers that he is a research scientist. Indeed, his written responses seem carefully designed to reinforce his expertise. In his posts Grant uses highly technical jargon to describe chemical processes, includes citations to academic journal articles, and he explains how he uncovered design flaws through a reanalysis of the IARC data on tanning. Like Smith, he emphasizes that the health benefits of UV exposure far outweigh the risks. He notes that “while a few thousand excess deaths per year might occur from melanoma and skin cancer” it is insignificant compared with the expected benefit of avoiding 400,000 premature deaths each year.

D.L. Smith and William B. Grant each posted multiple, lengthy responses. In one post Smith chastised the author for her bias. The author, Parker-Pope, who occasionally responded to posts with clarifications or challenges, readily acknowledged her bias against tanning and asked Smith to disclose any affiliations and financial connections. In his reply, Smith writes that he is retired and receives no compensation from the tanning

74 industry. He did not mention the fact that he co-authored a critique of the report by the

International Agency for Research on Cancer (IARC), titled “The truth about the recent

IARC report” (Reykdal & Smith, 2009).

Dr. Grant, who also has disagreements with the IARC, acknowledged he received funding from several organizations including the UV Foundation and the Sunlight

Research Forum. Dr. Grant is also the founding member of Sunlight, Nutrition and

Health Research Center (SUNARC), a 501I 3 organization. Writing responses to articles is part of Dr. Grant’s mission at SUNARC. According to the website, “The educational efforts of SUNARC include such things as maintaining the sunarc.org web site, presenting his research findings at scientific health conferences, local health group meetings, and indoor tanning expos, writing essays that are published in e-letters…and seeking to correct misunderstandings in either scientific or popular literature” (SUNARC, n.d.). SUNARC, along with most of the other organizations from which Dr. Grant has received funding, can be accessed via links on the Indoor Tanning

Association website (ITA, h).

The 58 responses to this article include a mix of personal opinions and factual information, and personal opinions disguised as factual information. Some of the factual information is accurate, and some is not. Some posts are undoubtedly sincere responses to a thought-provoking article, and some are written by individuals with a business or financial stake in promoting tanning. And a few responses, certainly the ones from

Shelly, and Grancel, and perhaps the one from the person who signed as Shutup, seemed to be informed by the personal experience of disruption.

I have included this extended example because I believe it is a worthwhile snapshot of the disputes surrounding this topic. It also provides insight into the

75 tremendous communication challenges facing dermatologists and heath scholars who seek to educate for the purpose of reducing the potentially catastrophic consequences of indoor tanning. Full of expert claims and emotional appeals, these postings tell stories that are intended to persuade. Some who write may be motivated by profit, by altruism, by concerns for self, or concerns for others. Readers are left to compare the posted opinions against their own. It is a storied process. Through reading or writing, agreeing or contesting, interacting with persuasive stories will either challenge or confirm prior beliefs. The resulting judgments, much like these postings, will range from naiveté and ignorance to insight and hard-won wisdom. This is why tanning stories matter; there are consequences to belief. Behavioral choices emerge from hearing, telling, believing, and perpetuating stories. The patients I interviewed also believed stories about tanning. They told themselves stories about tanning, and they shared stories with others. Those stories led to behaviors. Those behaviors led to consequences…and disruptions. Disruptions often require new stories, and those were stories I was interested in hearing.

CHAPTER 5: THE STORYTELLERS: MESO-LEVEL NARRATIVES

“Storytelling is the most powerful way to put ideas into the world today” (McKee

cited by Vanadia, 2013)

“I do it because it’s a chance to make a bigger impact, to save many lives” (Dr.

Brod)

In this chapter we will transition from the narratives of national organizations to the stories of individuals and organizations that operate at state and local levels. We will meet the influential individuals who reiterate, reframe or even refute meta-level narratives, and then apply the resulting meso-level narratives for their own purposes in advocacy, campaigning and sales. We will examine the methods used to influence and in some cases, hear about the motivation that inspires advocacy work. Considering the motivations and methods used by physicians and others who work to eliminate indoor tanning allows us to compare their rhetorical choices with those who work to promote indoor tanning. Aristotle’s principles of logos, ethos and pathos are useful as a standard to appraise the rhetorical use of meso-level stories by influential individuals on both sides of the tanning debate.

This storyteller chapter contains the actual stories, gathered in interviews and pieced together in ways that hopefully will highlight the common themes and surprising insights that emerged during conversations about the truth and consequences of indoor tanning. I spoke at length with four dermatologists and a patient advocate who directs the

Melanoma International Foundation, about their experiences with advocacy, tanning, and skin cancer. I include excerpts of their stories and position them against counter examples of meso-level narratives from tanning industry sources and salon owners gathered from association websites, industry-related blogs, and salon information pages.

In contrast to the more anonymous meta-level organizational narratives, when individuals who are organizational representatives, affiliates, or volunteers appropriate and apply narratives, I use the term meso-level. Although the stories may be similar, even identical to the organizational stories, at the meso-level it is the individual’s credibility, authority and influence that are significant. As specific individuals use their professional positions, expertise and networks as platforms of influence, the meta-narrative of the larger organization becomes a personal testimony. Useful to advocate a policy and advance a cause, tanning stories are translated, reiterated and pressed into service. Like any other persuasive appeal, listeners must decide on the veracity of the claims by considering the credibility or ethos, of the speaker, examining the rational evidence or logos, which is presented in support of claims, and ultimately by responding to the emotional impact or pathos of the stories that are employed precisely for that purpose.

There is evidence of “meta-narrative trickle-down” in these meso-level stories. At the meso-level some of the same themes are adopted for use in ads, articles and arguments. And whether meso-level storytellers are arguing before state legislators or explaining their position to local journalists, the same sharp contrasts exist between the narrative that indoor tanning is healthy and natural, and the position of dermatologists that not only is there no such thing as a safe tan but that indoor tanning is especially dangerous. This first storyteller section includes a description of meso-level narratives and examples of how they are deployed by influential individuals. Contexts for contested meso-level claims include legislative arenas, local political contests, popular press articles, tanning salons and clinics. In some cases, individuals work to faithfully represent relevant larger organizations, while other speakers have chosen to selectively co-opt organizational narratives without referencing and facing the same legal constraints as

78 larger organizations. The meso-level represents a middle ground between the meta-level organizational narratives and the micro-level individual stories. At the meso-level, influential individuals may be sharing the stories of larger organizations, but in meso- level contexts, they are personal, and so are the accusations and insults that are directed at meso-level advocates. At the meso-level, players often have “skin in the game” and a personal stake in the outcomes that result from their persuasive storytelling efforts.

Professional organizations exist to further the efforts of members, and in turn members support the organization, contributing time and material assets. In the cases of the ITA and the AAD, training is available to members who are encouraged to become advocates and spokespeople, reiterating organizational narratives and values. But members typically are not employees; they retain a great deal of autonomy and the public performances of member narratives may vary a great deal from those of the organization.

One example of this divergence is Bernie Ackerman. Dr. Ackerman, now deceased, was an influential dermatologist who felt the AAD’s emphasis on avoiding the sun was overstated. In 2004, he wrote the book, The Sun and the “Epidemic of Melanoma: Myth on Myth! (Hoffman, 2008).

Ackerman’s book is widely quoted in pro-tanning, pro-vitamin D literature. While arguing for their positions, each side in this debate manages to produce “experts” including physicians such as Ackerman, and Michael Holick, the outspoken vitamin D researcher who was introduced earlier. Each side purports to provide the public with the information necessary to separate fact from fiction, to provide “the truth” and expose the

“myths” (JCTA b). Yet, how might one actually arrive at the truth, and does having the

“truth” necessarily mean a change in behavior? The time-tested and familiar concepts of logos, ethos, and pathos are useful when deciding among truth claims. Logos involves a

79 claim’s factual evidence and supporting statistical data; ethos, the credibility, reliability and character of the rhetor; and pathos the persuasive story’s appeal to beliefs and emotions. Lobbyists on each side of this issue attempt to make use of these elements, logos, ethos, and pathos. As we consider meso-level stories and approaches to advocacy,

I believe that critically considering logos, ethos, and pathos will help to determine the veracity and persuasive potentials of the truth claims of the indoor tanning industry and of dermatologists.

From National Organizations to Influential Individuals and Companies

As I explained earlier, in this discussion of the various levels of tanning stories, my use of the term meso refers to an intermediate level between the meta-narratives of national organizations such as the AAD and the ITA, and the micro-narratives of individual patients. Meso-level narratives have the potential to influence a broader audience than individual narratives. Tanning stories may originate and emanate from powerful national or international organizations, but at the meso-level those stories are selectively appropriated and applied by individuals involved in advocacy and by people such as small business owners and physicians who establish training policies and procedures for their salons and clinics. An example of narrative change that occurs across levels is the varied response to information regarding the Federal Trade Commission

(FTC) settlement.

The FTC settlement.

In 2010, The Federal Trade Commission required the ITA to include a warning about skin cancer in their ads. They were also prohibited from continuing to make false claims regarding the benefits of tanning (For an example, see Appendix E). Under this prohibition tanning ads could no longer include statements such as “indoor tanning is

80 approved by the government,” “indoor tanning is safer than tanning outdoors,” or “enjoy the sun on doctor’s orders” (Burkhart, 2011 p. 561).

An online tanning industry forum included the following exchange regarding the

FTC settlement. This question was posted to the forum:

What can we say? What can’t we say? Smart Tan is always promoting Vitamin D,

they sell posters & such that promote it but at the same time we are told we can’t

make any health claims? I think it would be nice to have a session in Nashville

(Author’s note: this refers to the industry’s convention) called “what you can and

can’t do in advertising.”

The posted answer:

Under its settlement with the Commission, the association is prohibited from

making the misrepresentations challenged in the complaint, from misrepresenting

any tests or studies, and from providing deceptive advertisements to members. The

settlement also requires that future association ads that make safety or health

benefits claims for indoor tanning may not be misleading and must be substantiated.

Further, the order requires that certain future advertisements from the association

contain disclosures. Ads that specifically make claims about the safety or health

benefits of indoor tanning are required to clearly and prominently make this

disclosure:

“NOTICE: Exposure to ultraviolet radiation may increase the likelihood of

developing skin cancer and can cause serious eye injury.”

Ads that claim exposure to ultraviolet radiation produces vitamin D in the body,

or make other claims about the effectiveness or usefulness of indoor tanning

products or services for the body’s generation of vitamin D, must clearly and

prominently make this disclosure:

“NOTICE: You do not need to become tan for your skin to make vitamin D.

Exposure to ultraviolet radiation may increase the likelihood of developing skin

cancer and can cause serious eye injury.”

The poster’s response to this information:

I’ll take this disclaimer all day. Everything these days has disclaimers on it.

Supplements, diet pills, smokes, your hairdryer & toaster

(Tan Today, n.d.).

Island Sun Tanning: A meso-level example.

Island Sun Tanning operates five tanning salons in Pennsylvania. This entity is not officially bound by the restrictions in the FTC Settlement. The owners may or may not be aware of the settlement but at the meso-level, individual salon owners are crafting stories to suit their own purposes. It turns out that compared to the FTC guidelines, Island

Sun Tanning is disseminating a very different story, and they do so via their online website. Island Sun’s Tanning Info Page, is written as a series of questions and answers.

It seems evident that the Info Page questions are designed as prompts for the “factual information” the owners of Island Sun Tanning believe will influence consumers. I have included a few of the questions from this Info Page, and with the exception of a partial answer for the first question, I have included a full transcript of their answers:

1. Aren’t all salons alike?

This Smart Tan Salon follows important medical issues, federal and state

regulations and product updates giving you the smartest tanning experience

available. So, “Tan With Confidence”

2. Is there no such thing as a safe tan?

Actually, you could say that it is not safe to totally avoid the sun. Research suggests the benefits of regular sun exposure may outweigh the risks of overexposure by merely avoiding sunburn. Research shows that regular, moderate sun exposure might actually decrease your risk of getting breast cancer, colon cancer or even osteoporosis.

Women are 69 times more likely to die of breast cancer than skin cancer. And new research suggests that the Vitamin D you receive from ultraviolet light may inhibit the formation of many forms of cancer, including breast cancer. These are reported facts from many pieces of research, we are not saying indoor tanning is therapeutic.

3. Why do we always hear that tanning is bad?

The almighty dollar. The fear of the sun is a multi-billion dollar industry led by huge special interests who conduct most of the research on this topic and promote it as well. Lobbyists for pharmaceutical firms that sell billions of dollars of sunscreens and anti-sun cosmetics have muddied the issue by overstating the risks of sun exposure.

Conversely, there is no major industry except the indoor tanning industry that makes money by promoting the positive effects of sunshine. And the indoor tanning industry consists of smaller companies that do not match the marketing power of the multi-billion dollar “sunscare” industry.

4. Why have some dermatologists taken such a strong position against tanning?

The dermatology industry makes most of its money on “vanity visits” from patients. One prominent New York dermatologist estimates that 50-90 percent of

the dermatology industry’s business is “cosmetic” and medically unnecessary.

Skin cancer is an important issue to the dermatology industry because it

represents the only subject that its lobbyists can promote as critical or life

threatening. Unfortunately, in their zeal to scare consumers into their offices,

lobbyists for the dermatology industry have exaggerated research findings by

reporting only certain aspects of this highly controversial issue (Island Sun, n.d.).

These excerpts demonstrate that, at the meso-level, narratives may deviate from official organizational positions. A ruling that applies to the ITA, constricting advertising choices, may not impact the local advertising of salons. The sphere of influence for meso- level messages, while not as broad as meta-level narratives, can still be significant. It is also interesting to consider some of the rhetorical choices being made in this series of answers. First, the terms sun and sunlight are used as synonyms for tanning lamps.

Second, the writers attempt to establish their credibility by explaining that they follow

“important medical news” and by providing facts from “many pieces of research” that seem to indicate avoiding the sun is more likely to cause cancer than is sun exposure.

One concession to FTC standards comes in a single sentence disclaimer “we are not saying tanning is therapeutic.” The third notable choice is to attack the integrity of their critics. By labeling opponents of tanning as “pharmaceutical lobbyists”, and “cosmetic dermatologists” Island Sun diminishes the stature of medical professionals as health guardians and frames them instead as greedy profiteers, willing to scare consumers for gain. In a David and Goliath typology, it is only the valiant efforts of the “smaller companies” in the tanning industry that protect the public against the multi-billion dollar

Goliath that is the “sun-scare” conglomerate.

Dermatology, a medical specialty.

In the above example, Island Sun is echoing a familiar refrain of the tanning industry by depicting dermatologists as those whose work primarily consists of cosmetic treatments that are “medically unnecessary” undertaken during “vanity visits” by unwitting or scared patients. Not surprisingly, the AAD website describes the medical specialty of dermatology quite differently. “Dermatologists are medical doctors who train in this area for many years, making them experts in all things related to hair, skin and nails. Dermatologists treat more than 3,000 different diseases.” In order to become a dermatologist an individual must successfully complete a bachelor’s degree, a medical degree, an internship and a dermatology residency. After their residency, many dermatologists continue as Fellows, in advanced study of a dermatology sub-specialty

(AAD, 2014).

The Island Sun Tanning Information Page is not alone in their attacks on the credibility, integrity and truthfulness of dermatologists. Attacks of this sort are a common feature of tanning industry material. When I spoke with dermatologists at the AAD summer meeting, I asked two of them if they felt personally attacked by these tactics. Dr.

Cronin shrugged it off saying, “Well I guess people can always find something to criticize. I have heard them use terms for us like the melanoma mafia.” When I asked Dr.

Burkhart about derogatory comments from the ITA, he responded by telling me about a general lack of respect for dermatology as a medical specialty. At first I assumed his answer was a non sequitur, but the more I thought about it, the more I wondered if these were connected. Being familiar with the fact that dermatology is very competitive as a specialty, I was frankly surprised to hear Dr. Burkhart mention a lack of respect. So in order to better understand his comment, I researched dermatology in the context of

85 prestige and hierarchy within medical specialties. I read reports of prestige, income, and satisfaction rankings across specialties. I also looked at trends in medical training and residency choice. What I found was that while it is true that for third-year medical students applying to a residency program, dermatology is one of the most competitive specialties, it is also true that prestige rankings of medical specialties place dermatology toward the bottom of the list.

Why would a low-prestige specialty be competitive? One might speculate that the competitive nature of dermatology as a specialty is due in part to the greater degree of flexibility, autonomy, and the relatively more family-friendly schedule that dermatology offers. These benefits were mentioned as potential reasons why, in a comparison of career satisfaction and medical specialties, dermatologists were significantly more likely to report a high degree of career satisfaction. As a specialty, dermatology, along with geriatric-internal medicine, neonatal medicine and pediatrics, ranked near the top of the career satisfaction list (Leigh, Kravitz, Schembri, Samuels & Mobley, 2002). Interesting to me is the fact that these medical specialties could be characterized as more relational than some other specialties.

Despite being a competitive program with a high satisfaction rate, dermatology has historically ranked toward the bottom when status or prestige is being measured.

Rosoff and Leone (1989) noted that dermatology has consistently received low prestige ratings from both medical students and other physicians. These internal prestige ratings among physicians are relatively stable; typically dermatology and psychiatry are near the bottom, and surgery, cardiology and internal medicine are at the top (Hinze, 1999, Rosoff

& Leone, 1989). After qualitative interviews with medical residents, Hinze (1999) theorized that the specialties that were consistently rated the most prestigious tended to

86 be more masculine. According to Hinze, cultural associations for activities that a surgeon would engage in are active and masculine – they involve hands-on fixing, cutting, and taking charge. Less active activities such as listening and soothing are culturally associated with the feminine. These are behaviors low-rung specialists like pediatricians and psychiatrists might employ (Hinze, 1999). This was an interesting observation but it didn’t seem to answer the question about why dermatologists who seemed to do cutting, fixing and listening, ranked low on prestige scales.

A similarly low prestige ranking of dermatology persisted outside of medicine as well. In a study measuring the status perceptions of 400 college students, dermatology was ranked tenth out of ten medical specialties. Dermatologists were rated last in perceived income although their actual income puts them in the middle of the list, and last in the two other categories of assessment: esteem, and social value. The authors speculate that if the “public were more aware of the functional importance of dermatology—beyond its stereotypic reputation—in areas far more vital than the treatment of adolescent complexion disorders, this might elevate the ascribed level of prestige” (Rosoff & Leone,1989, p. 380).

The Rosoff and Leone study is dated, and perhaps the public no longer views dermatologists as simply providing treatment to acne sufferers. But what is the impact of the repeated and public accusations and insults from the tanning industry? For dermatologists, do personal, public and professional perceptions of prestige suffer? These attacks from professional tanning organizations usually involve recurring themes.

Tanning representatives attempt to undermine dermatology as a specialty by questioning their motives and attacking their status as physicians. By referring to them as “cosmetic dermatologists” and claiming that anti-tanning advocacy is primarily a profit-making

87 scheme, the indoor tanning lobbyists engage in a wide-spread character-assaulting campaign against these physicians.

According to tanning industry sources, this quest for profit motivates dermatologists to lie to the public about the danger of indoor tanning. Dermatologists warn people to avoid tanning beds, not because they are dangerous, but in order to induce the public to pay higher prices for photo-therapy in their offices. “The cosmetic dermatology’s powerful fear-based marketing message, which drives millions of customers into their offices, has helped grow their businesses by 320%. And the existence of the indoor tanning industry is competitive to dermatology’s multibillion- dollar phototherapy industry” (Tanning Truth, n.d.).

Additionally, dermatologists are accused of conspiring with manufacturers of sunscreen, to frighten and defraud consumers. The “Tanning Guru” writes of his strong belief that “there is a conspiracy and Black PR campaign from dermatologists sponsored by large manufacturers of chemical sunscreen lotions going on that try to scare us away from the sun and tanning beds” (The Tanning Guru, n.d.).

Dermatologists, pharmaceutical companies that manufacture sunscreen, and non-profit groups are routinely accused of conspiring to defraud the public. According to

Tanning Truth, a website affiliated with Smart Tan, this conspiracy also includes the Skin

Cancer Foundation which is referred to on their webpage as a, “marketing front group organized by sunscreen manufacturers” (Tanning Truth, n.d.).

Chemical sunscreen is mis-marketed as a daily use product – as a fear-based

purchase. Chemical sunscreen manufacturers are not allowed to advertise that

chemical sunscreen prevents melanoma. So chemical sunscreen companies pay

Dermatology groups millions of dollars to endorse their product and make that

claim on their behalf (Tanning Truth, n.d.).

Tanning industry executives and lobbyists routinely claim that dermatologists mislead the public, and that this misleading happens either through intentional scare tactics or because dermatologists don’t understand the available science. In the following excerpt from the Sunlight Institute, dermatologists’ oft-repeated contention that there is no safe tan is called “non-defendable.” It is also interesting to note that there is a tendency for industry representatives to equate indoor tanning beds and the sun. Many organizations that are networked in support of tanning have sunlight in their names. This conflation between sunshine and tanning lamps means that indoor tanning is often described as a healthy and natural process. They promote tanning as a source of vitamin

D and often speak of tanning beds and sunshine as interchangeable concepts. Consider this quotation from the Sunlight Institute’s webpage:

Dermatology industry lobbyists, in attempts to scare people out of the sun, often

have compared tanning to smoking cigarettes, making the statement that

suntanning is like a cigarette for your skin. This hyperbole is fear-based

marketing that is fundamentally flawed. To compare tanning to smoking ignores

this fundamental difference: One is a vice, and one is a natural body process.

Dermatology industry lobbyists have maintained that a suntan does not protect

against sunburn outdoors. This contention is also non-defendable. A tan is the

body’s natural protection against sunburn.

(Sunlight Institute, n.d.)

Tanning industry tactics.

Perhaps one of the most shocking claims being made by the tanning industry is that by advocating against indoor tanning, dermatologists are responsible for causing death. In a training video designed to give salon employees talking points, Joseph Levy, executive director of Smart Tan, announces, “The sun scare people are just like big tobacco, lying for money and killing people,” (Huber, 2012). This quote is ironic given the fact that the article’s author suggests that a defiant tanning industry is fighting back with strategies similar to those used by tobacco companies. “The industry has gone on the offensive, using tactics that appear cribbed from big tobacco’s playbook to undermine scientific research and fund advocacy groups that serve the industry’s interests. (Huber,

2012).

The names of several non-profit advocacy groups are included in this Fair

Warning article. Among them are groups such as: The Vitamin D Alliance, The Vitamin

D Council, Grassroots Health, Sunlight, Nutrition and Health Research Center, and the

Breast Cancer Natural Prevention Foundation. According to the author, these groups rarely acknowledge their connection to the tanning industry. Just like those who posted anonymous online responses in the earlier example, individuals involved in non-profit organizations that promote vitamin D often fail to disclose their personal stake in the tanning industry. For instance, Joe Levy from Smart Tan and the CEO of Beach Bum

Tans, a chain with 53 tanning salons, were both officers of The Vitamin D Foundation.

This connection allows the money raised by their foundation to be funneled into pro- tanning efforts (Huber, 2012).

The typical message from these “scientific” and non-profit groups is that inadequate vitamin D can lead to several conditions and cancers including breast cancer.

Breast cancer awareness is a popular cause for salon owners. Smart Tan News encourages salons to contribute to breast cancer prevention week by encouraging tanning:

It’s an easy turn-key operation for your salon: Smart Tan is distributing

fundraising/awareness kits for the non-profit Vitamin D Foundation. Proceeds

support the non-profit groups, and the fundraising kits enable your stores to earn

back the cost of the kits. It’s a win-win for your business, your community, and

the non-profits you will be supporting. This connection allows the money raised

by their foundation to be funneled into pro-tanning efforts (Smart Tan a).

Meso-Level Influence for Selling and Advocacy

The meso-level includes city and state-level politicians. As policy-deciders, legislators hear stories from constituent groups and respond by agreeing with or rejecting the veracity of those stories. Because the legislative process requires position-taking and persuasion, these legislators become involved in creating and disseminating their own version of tanning stories. In order to provide an example of this, I conducted an online search for tanning articles from Pennsylvania news outlets, several of which are cited in the following section. These articles often include meso-level arguments from an array of local stake-holders: politicians who are bill sponsors, physicians who support bans, salon owners who oppose the legislation, and often a personal story from a former tanner and melanoma survivor.

A typical example is an article on PennLive.com, a news website for Central

Pennsylvania. In this article Southwick (2013) writes about the proposed Pennsylvania tanning bill. He quotes a press release from the bill’s sponsor, Representative Swanger.

The representative’s quote that, “Tanning beds are essentially cigarettes for the skin” was the same idea that was mocked in 2011 by the Sunlight Organization. The news article

91 includes a description of the bill, a comparison to the recent New Jersey bill, and a rebuttal from the tanning industry. The article also mentions the fact that Representative

Swanger’s sister-in-law is a skin cancer survivor (Southwick, 2013).

Individuals and companies at the meso-level may be strongly influenced by meta- level narratives. In their professional capacity these individuals may be representatives or stakeholders of the larger organizations, they may even be primary authors of source material used by the larger organizations. In order to equip influential representatives and to promote advocacy and sales efforts, large organizations provide training and resources to members. The International Smart Tan Network represents 6,000 tanning businesses.

Smart Tan publishes a trade periodical and sells training programs. They sponsor the annual trade show and provide news and resources online (Smart Tan b).

One online resource made available to Smart Tan followers was an article on selling and believing. The author suggested that savvy sellers don’t ask their customers to think; instead they make them believe because, “belief is at the root of every buying decision.” This article, written by Geoffrey James, originally appeared on the online sales-oriented blog, Sales Sources on Inc.com. The article suggests that customers want to believe because it provides them “certainty in an uncertain world.” The Smart Tan website includes a section titled “Frontpage News.” Here, this article that was written as general selling advice is now offered as a business strategy for tanning salon operators whose target customers are teenagers. The article suggests that the three keys to creating belief in your customers are: (1) Believe in yourself and the value of your product. (2)

Provide less information; and (3) Let your customers be your evangelists.

Interestingly, the tanning industry seems to excel at each of these strategies.

Tanning forums for salon owners contain hundreds of posts touting the health benefits of

UV radiation and the almost miraculous powers of vitamin D. Elaborating on his second suggestion to provide less information, the author explains that, “belief comes first, then one seeks information that confirms the belief and ignores what contradicts it.” I can understand how this is valuable advice for salon owners, because for many of the patients

I interviewed, an “information-less” belief was instrumental in their choice to keep tanning. The article states, “Customers who have become believers do the talking on your behalf.” It is certainly the case with tanning, where the influence of group norms and peer behaviors are strong predictors of tanning.

Another group representing tanning industry interests, The Joint Canadian

Tanning Association (JCTA) addresses teen tanning on their website. They write that teens need to be educated about the sun and tanning. In the salon, operators are available to provide this education, but outdoors, everyone is left to learn on their own. They write that a ban on tanning would have “unintended consequences and backfire.” They elaborate on these unintended consequences by suggesting that, “independent surveys” show teens will, “tan more aggressively outdoors or will turn to unregulated home tanning units in friends’ basements” (JCTA a).

The JCTA is correct in pointing out the importance of peer influence on tanning behavior. Adolescence is a time of identity exploration when social interaction, peer influence, popularity, and status are especially significant, making social influences especially important (Simona, 2009). Adolescents who believe that their friends tan are more likely to engage in tanning themselves. A perception that peers are tanning and that peers have a positive attitude toward tanning is strongly associated with the likelihood of a positive decision to tan (Lazovich & Forster, 2005, Hoerster et al., 2007). The tanning

93 industry is working hard to maintain a positive perception of tanning at the same time they seem to be bracing for increased legislation.

The Tan Smart Website chronicles a “World Summit” of tanning association leaders from Europe and North America meeting to discuss business trends during their industry’s annual conference. Regarding these current trends “sources suggest that collaborative efforts between salons, associations and political bodies are yielding beneficial results for professional salons.” The article also claimed that salons that were not “operating with best practices” unwittingly enabled “the media to attack our industry.” This observation is not surprising given the fact that Tan Smart sells best practices trainings. Finally, so that U.S. salons might be encouraged by the experiences of their international counterparts, the article notes that in Europe and Canada, “age- restricting legislation had minimal impact on businesses. And in the Netherlands, legislation setting maximum irradiance levels seems connected to improving customer confidence in tanning salons” (Smart Tan, n.d.).

Smart Tan uses technology to offer individuals who are interested in tanning more than just an opportunity for training. In fact, by using targeted marketing it is possible for a local connection to be made using what amounts to Internet trickle down. Clicking a link from the Smart Tan website will take the curious to the “we are sunshine” page where, in addition to a list of the benefits of tanning, a series of video testimonials from customers, and links to other pro-tanning sites, potential customers will find a long list of local tanning salons, personalized just for their zip code.

Advocacy Stories are Personal

No matter how faithful, how loyal, or how indoctrinated an individual might be, by virtue of the fact that they are acting as individuals with a more limited scope of

94 influence, a single individual can never be an exact copy of a larger organization. And meso-level stories will not be an exact copy of meta-narratives. Each of the individuals I interviewed for this section is an influencer who has used tanning stories in advocacy.

Four of the interviewees are physicians and one directs a foundation that provides information about melanoma and support to patients. In their professional capacity, these four dermatologists and one patient advocate use stories to persuade policy-makers. Their advocacy is informed by education and experience; their testimonies include relevant scientific data. But these are not simply “professional stories” trotted out for rhetorical purposes. The very act of advocacy is a storied performance, an individual decision to expend resources. Dr. Bruce Brod has been working to get a tanning bill passed in

Pennsylvania for 24 years and when I asked him why he talked about fighting the injustice of tanning salons that endanger people’s health in order to make a profit. For the people I spoke with, these meso-level stories, rather than being fundamentally utilitarian, are deeply personal.

The Storytellers who use Meso-level Narratives in Order to Reduce Indoor Tanning

 Dr. Cronin- Terry Cronin is a dermatologist affiliated with several hospitals in

Melbourne, Florida.

 Dr. Burkhart- Craig Burkhart is a pediatric dermatologist and Professor at the

University of North Carolina, Chapel Hill.

 Dr. Brod- Bruce Brod is a dermatologist in Lancaster, Pennsylvania.

 Dr. Sullivan- Sabra Sullivan is a dermatologist in Jackson, Mississippi.

 Catherine Poole- Cathy Poole is the Founder and Director of Melanoma

International Foundation (MIF).

I interviewed Dr. Cronin and Dr. Burkhart at the summer meeting of the

American Academy of Dermatology. Dr. Burkhart was presenting as part of a panel in a session organized by Dr. Brod entitled, Protecting America’s Youth: Responding to

Tanning Industry Arguments and Advancing Effective Policy. I spoke personally with Dr.

Sullivan on several occasions and we corresponded over email. I interviewed Dr. Brod and Cathy at their homes at a later date.

Fighting the Good Fight…with Stories

“I think stories have a way, I think they hit you in a different way. They hit your

heart in a different way.” (Dr. Burkhart)

Dr. Sullivan: Why do I do advocacy work? I do advocacy work because I want

to help. It bothers me a lot when people don’t get needed treatment or ignore

health risks simply because of a lack of knowledge. It also bothers me when laws

or regulations are passed simply because of a lack of knowledge.

Although it is possible for city-level ordinances to be passed, for the most part tanning regulations are implemented at the state level. In 2003, only 3 states placed age restrictions on tanning. 18 states required written consent for minors and 8 of those required a guardian to accompany children younger than either 14 or 16 (Dellavalle et al.,

2003). Currently, 31 states have introduced legislation to ban or limit indoor tanning for young people. So, despite active opposition from the indoor tanning industry, the tide seems to be turning. (Foley, 2013)

In addition to working on legislative issues for the national organization, the

American Academy of Dermatology, Dr. Brod is also a part of a state-level professional organization, the Pennsylvania Academy of Dermatology and Dermatologic Surgery

(PAD). When I asked him about his advocacy work at the state level, Dr. Brod produced

96 a copy of the Pennsylvania Indoor Tanning Bill History (Appendix D). This history lists all the bills related to tanning that have been introduced, provides a brief description of the bill and announces its fate. This nine-page document, covering legislative action since

1984, notes 23 times that the proposed bill “died in committee.” During the 2011-2012 legislative session there was progress, the bill “died on the house floor.” Dr. Brod has been working for years to get a tanning bill passed in Pennsylvania. This year, he thinks it might finally happen. I was curious to know what had kept him working on this for almost three decades.

Dr. Brod: The bill might pass in a few weeks. The senate majority whip who

used to sponsor our bill, and who has always been on board, has really pushed it

with leadership. You never know, but it should go. I mean, if it passes,

Pennsylvania has a ban - another state with the ban, and that’s good. I think the

most work went into this tanning bill. Years, hours, collaboration – we’ve been

working on this since 1984. I mean, I was a first year med student I had no

knowledge of this, so it’s been a long time. I’ll be pretty excited.

Is this part of the interview? (Laughs) Well, I do it because it’s a chance to

make a bigger impact, to save many lives. Actually, that’s really what lies at the

core of it; as a dermatologist, as a physician, it’s very rewarding. You help one

person at a time, and that’s sort of a gift to be able to do that, but to be a part of

something that can potentially have a big broader impact is a great thing. And

(laughs) they’re blocking me here, they’re blocking me there and I’m like, ‘They

are not going to beat me down, I’m going to get this thing passed!’ Also, it puts

dermatology where it should be – the whole core of dermatology. It’s not to be

able to say ‘well, I’m a dermatologist, one of the elite people,’ but it’s actually to

help people prevent skin disease and save lives. So it also helps the field of

dermatology. I feel a part of that; I feel loyalty to that.

A piece of putting dermatology in a good light is helping others to

recognize it as an important specialty – getting dermatology out there in the eyes

of the legislators. There are a lot of misperceptions about what dermatology is –

that it’s cosmetic; that we don’t really deal with serious medical issues. That is a

part of it, but it’s not why I initially got involved. I initially got into it because I

said, ‘It’s wrong: these people, these tanning salon operators are profiting at the

expense of people’s health and lives, and that’s an injustice.’ That’s initially what

got me into it. I think some of these other things kept me going, along with a lot

of other people. There are hundreds of people across the country who are working

on it.

Dr. Burkhart echoed the sentiment that misperceptions about dermatology as a medical specialty are all too common. This comment caused me to consider the prestige rankings of dermatology as a specialty described above and to wonder about the impact of the tanning industry insults (see pp. 86-91). Dr. Burkhart was concerned that these misperceptions might, at times, undermine his credibility as a physician.

Dr. Burkhart: For a century, dermatology hasn’t had a high regard from other

specialists. At the very first dermatology meeting, they were talking about how to

get other doctors to respect us. In terms of practicing and getting patients to trust

you and believe you really are doing the best for them…that always affects me.

I’m sure it’s an issue for some kids when they hear me talking about avoiding

indoor tanning beds. I’m sure they are like… the Jerry Seinfeld thing: ‘You are

one step above the cosmetics counter.’ They don’t realize we are real doctors.

As a dermatologist in an academic setting, I get emails about every six months

from high school student[s] asking, ‘What cosmetic place did you go to so you

could become a dermatologist? Because I’m really interested in working with skin

and make-up…’ If the reputation were improved, it would help gain trust from

our patients right away. Then they might listen, [and] take our advice.

Each physician, when asked, told me they believed that their advocacy work had an impact on their patients and practices.

Dr. Brod: I think, the day-to-day mechanics of the practice…I don’t think it has

shaped. But, sometimes, much to the chagrin of my practice, I do think it sends a

message that the practice is not just a small business; not just having a business to

make a profit, so everyone can have a job. But there is a higher mission to all of

this, and I do think that message goes to staff. For example, there is a melanoma

advocacy group locally. They have an event; I never said to my staff, “A lot of

you should participate; do the walk; make T-shirts.” But on their own, they opted

to do that. I think that’s an offshoot of the tanning advocacy.

I also think patients know this is important to me, and I try to put things on

the wall in the practice – things that are important, so they can read that. They

read that and then they say to me, ‘Oh it’s good that you do that.’ They realize

that we have other missions, other values. Direct patient care is important, but it’s

only one aspect of what we do.

I always tell patients who ask, ‘How are you doing? You’re always so

busy,’ I say, ‘what I’m doing here with you, patient care, is much more fun. I

know it; it’s straightforward. This is the easy part of my job.’ The other part, not

that it’s bad, but I think they understand. I think it helps them understand and

think, ‘Good, he doesn’t see us as a burden.’ There are other challenges that have

more controversy that are more uncertain, [and] that cause more stress than direct

patient care. Patient care, I don’t view in any negative light whatsoever.

Dr. Burkhart: People come into my office knowing I am an anti-tanning bed

advocate. They know I try to protect kids against that. When they come in, most

know that I think tanning played a major role in their cancer. Maybe not on first

diagnosis; they have to think about it. At first, they don’t know what hit ‘em. But

we will go through a whole education thing, and we will talk with the parents

about their melanoma[s]. And tanning beds [is] a huge thing and you have to say,

‘Don’t do that.’ Then they understand that tanning played a huge role in their

melanoma.

Dr. Cronin: I diagnose a new melanoma every week, so that’s 58-60 new cases a

year. And the number of non-melanoma skin cancers is staggering. It’s hard to

even count them. My practice is devoted to that only. There are numerous

dermatologists, plastic surgeons, and general practitioners in my town who are all

treating skin cancer as fast as we can. A dermatologist might go out and be an

advocate, and people get to know them; pretty soon they are very busy, working

very hard. But despite being busy, people in my area are very involved in the

World Skin Cancer Foundation. Everybody is involved in their own way. They go

to meetings that have advocacy efforts; they go to Capitol Hill; they meet

legislators locally; and they travel to meet legislators.

I asked each of these physicians about their experiences with advocacy. I wanted to hear how they involved patients in the advocacy process, and I asked them to share examples of the stories they used in advocacy. I heard from each one that sharing a

100 personal story, a story that contributed to a sense of relationship, could make all the difference in their persuasive efforts. The unique characteristics of narrative make it especially effective in advocacy. Stories can activate imaginative projection and transportation in listeners at the same time that they reduce the hearer’s tendency to formulate counterarguments. Listeners to a narrative may become vicariously absorbed in the story or picture themselves in the plot. Imaginations that are story-stirred are also capable of counter-factual thinking, picturing alternative outcomes and wondering what might have been different (Tal-Or, Boninger, Poran & Gleicher, 2004).

Narratives that elicit counter-factual thinking play a role in advocacy and attitude change by invoking an imagined conclusion that is different as a result of taking some new action (Tal-Or, Boninger, Poran & Gleicher, 2004). These physicians believed that sharing stories helped legislators understand the effect of tanning beds on the lives of patients. Perhaps eliciting counter-factual thinking, underscored for policy-makers the tangible consequences of their choices.

Dr. Brod: You know, it’s something I was taught, really, from going to advocacy

training sessions. I think that was a big part, and it is sort of intuitive. I think it

becomes more formalized because I was taught about the effectiveness of telling

patient stories or a personal story. When I first started with this, I had no idea how

to approach legislators. I thought you give them data; I knew you give them data,

and you give them statistics. So those are things I learned over time. The story is

very powerful. The legislators are moved by their constituents, and it doesn’t take

many. Sometimes it’s only one. You realize over time that oftentimes, the

motivation for big sweeping legislation is one event.

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To me, it was a learning process to learn that. I really didn’t know when I started how the legislative process really works: how issues come up, how bills are instituted. But in most instances, it’s in response to a need. I think that’s why the story is powerful – because it demonstrates very tangibly why there is a need for this, [and] what the impact is, rather than just data, numbers on paper.

For me, I am an E. S. T. J. (Author’s note: these refer to Meyers-Briggs Type

Indicator categories of Extravert, Sensor, Thinker, and Judging.), and I always come up the same. Which makes me sad, because I feel like I’m a “feeling” person, but you are what you are. So for me, it was really a learning process that not everyone thinks the same way. I thought, ‘This is bad. The numbers don’t lie; how can you argue with that?’ But that’s just not the way things always work.

Stories really play to people’s feelings; it’s a big motivating factor.

Dr. Cronin: I remember one instance when we were on The Hill. We try to reach as many people as we can. I went to see a member of Congress, and I started talking to his health legislative assistant about the problems of tanning beds and skin cancer. She immediately shared with me that she had just had an atypical mole removed and she was very concerned. She was so happy that a dermatologist had stopped by at a time when she was so worried. We related on a personal level, and she had a lot of questions I could answer. She promised that she would do everything she could to make sure that the representative was helpful.

Obviously, they are pulled in all directions from the tanning industry or from folks who have more libertarian views, or conservative views. Some might say ‘A salon is a small business; why should we interfere?’ Some say ‘People

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have a right to do what they want, whether it’s good or bad for them.’ Others

warn that if it’s dangerous, the government will end up paying for the damage

down the road. So there are a lot of different views on The Hill. Stories can bridge

the gap.

Dr. Burkhart: I think stories have a way… I think they hit you in a different

way. They hit your heart in a different way. Facts are one thing, but stories go

straight to the heart. Stories are memorable. Before we start any kind of

testimony, it is pretty much guaranteed every legislator knows the evidence.

That’s not what they dispute us on. Tanning beds are dangerous; tanning beds

cause melanoma; tanning beds kill people. They get that; there is no question.

Their only arguments are usurping parents’ rights and protecting small businesses.

That’s all they care about.

Statements from tanning industry representatives seem to support this contention that the legislative arguments about indoor tanning often focus on the role of government oversight and the economic concerns of small business owners. When New Jersey passed a law that allowed teens 17 and younger to tan only if a parent was present, salon owners argued that the bill would hurt their businesses, and that if parents wanted to allow their children to tan, the government should not interfere. The American Suntanning

Association complained, “New Jersey has let hysteria supersede the balance between parental rights and effective policy. Blanket bans do not respect the balanced truth about

UV exposure. This law will only drive teens to riskier alternatives like home units and beaches” (Southwick, 2013).

Parental consent is much less restrictive than other kinds of state-mandated age minimums. John Overstreet, the executive director of the ITA, in response to a proposed

103 tanning bill in South Carolina requiring written parental consent, said, “The industry’s best practice is parental consent.” Overstreet also commented on tanning taxes by saying they were a “blow to these businesses. These businesses are really, really struggling right now.” (Foley, 2013).

Some dermatologists believe the only salient issue in the debate is the question of government regulations. In a political climate fraught with disagreements regarding the appropriate role of government regulations and oversight, it sometimes seems that the individual merits of the debate over tanning are lost and the issue is reduced to a dichotomy of regulations are good vs. regulations are bad. Dr. Burkhart felt that other arguments, such as the issue of vitamin D were not even given serious consideration. For him, a significant issue was the tanning industry’s habit of presenting indoor tanning and time in the sun as interchangeable concepts.

Dr. Burkhart: Vitamin D – they never even question that anymore. Tanning beds

are not the same as sunlight. It’s mostly UVA; that’s the falsity. So it’s just those

two things.

According to JCTA’s webpage Discerning the Myths from the Facts, it is a myth that tanning beds are different than the sun. They report that, “90% of indoor tanning equipment emits the same thing (as the sun) but in slightly higher doses” (JCTA a).

Dr. Burkhart: Overemphasis on facts is definitely a problem. People give fact

after fact after fact, and it turns into a little war between dermatologists and the

ITA, fact-fighting back and forth. Really, stories are the only way you can get

over that hump, because you have to show them every life is precious. As a

doctor, I feel that saving one life is important. What if it is your daughter, your

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cousin, your wife? A statistic won’t tell you that; [it] won’t win your heart. That’s

how we have to do it. We just emphasize the stories.

I bring patients in. We always have patients who want to come in, want to

tell their story. If there is a woman who is under 35 with melanoma, chances are

she used indoor tanning beds. That’s just the way it is. You see the age and you

say, ‘Want to go to Congress and talk about it?’ It has always played a role,

putting a face – a sad face – on the condition. They hear how it has affected them

in some important ways. The stories of these people whose lives are affected –

that is real; that’s what has to be presented to Congress.

What Dr. Burkhart and the others seem to be describing is the process of

“thinking with stories” (Frank, 1995, Morris, 2001). Refuting the stereotype of the aloof expert, these physicians recognize and embrace stories as a means for merging the duality of cognitive reasoning and emotional response. They use stories because they anticipate that others will likewise respond to both the reason and the emotion present in these narratives. It is not surprising that in this work patient narratives can be game changers.

Thinking with stories, as opposed to simply thinking about stories involves a willingness to be moved and leaves one vulnerable to the story’s impact. Recognizing the commonality of the human condition and heeding the moral call of stories has the power to move us not just to empathy, but ultimately to a willingness to be “remade” (Morris

2001).

Dr. Sullivan: I learned early on that sharing can make a big difference. I think

that’s true whether you are a patient, or legislator, or a parent. Being a patient

cued me in on that early on. I grew up in extreme isolation from other people that

have my specific disease. (Author’s note: Dr. Sullivan, as a transplant recipient,

105 has spent a great deal of time as a patient.) As you grow up, you tend to isolate yourself, but actually interacting with peers can just have a tremendous difference in one’s quality of life.

Being a patient taught me personally what a difference advocacy had made in my life. People that have never been sick don’t realize how comforting it is to know they are not the only one. I use stories of my life, of my patients’ lives, and stories of knowledge in our advancement in science to advocate for my patients. I think what we always have to remember is that these stories give us an example so that we can share certain touch points.

Dr. Brod: I recruit patients in many ways – sometimes from my own practice, sometimes they contact me. That’s one of the advantages of doing this for so many years: you become the default person. So ‘if you want to get involved with tanning and you have a story, call this guy.’ It’s also a good reason why it’s important to hang in there year after year, because it really does build those relationships. You can’t flow in and out of this stuff unless you have a really good lobbyist, I guess. It really helps to do something long term. Plus, I’m a really slow learner (laughs).

Even though it was two legislative sessions ago, it really brought our bill to a new level when we brought someone with a personal story with us. She contacted me; it was Jessica Lily. She said she was a pediatric resident at

Children’s Hospital of Pennsylvania. She said, ‘I really want to get involved in this tanning advocacy.’ I thought maybe she wanted to get into dermatology. She told me, ‘No, I had melanoma and I used tanning salons.’

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She grew up in Mississippi. She told me her story over the phone, which was educating for me. I said, ‘This makes a lot of sense. It’s not just that you’re worried about having a recurrence of melanoma.’ It was a whole set of feelings about how it impacted her family. And I said, ‘Yeah, we could use your help.

We’re going to meet with the Senate Appropriations Chair; that’s where the bill is. Why don’t you come up? It’s in six weeks.’ And she came.

We were in our same pattern: usually three or four dermatologists, nice and dedicated, well-intentioned people. And we met with the Senate

Appropriations Chair – the member – and said, ‘Our tanning bill is in your committee. We are hoping you can bring it up for a vote. Tanning is really bad and it’s the leading cause of cancer in young women, and it’s the second in this and that… And there are so many in Pennsylvania… And we are one of the few states…’ And you know, you could see he’s heard their issue the day before, and somebody else’s issue the day before that, and I’m sure it’s all well and good.

Luckily, he wasn’t so bored, and I said, ‘Why don’t you listen to Dr. Lily here?

She has a story to tell you.’ She told her story. He listened intently; his whole body language changed compared to when he was speaking with us. At the end of it, he said, ‘I’ll have it out of committee in two weeks.’

That was it. And since that time, he did, and the bill passed in the Senate and got hung up in the House. But the Senate leadership, from that time on, has been on board. We’ll see what happens in a couple of weeks, because the bill is in their court right now. A lot of the players haven’t changed, and the expectation is that they are on board, and it’s from that experience. Story makes a huge difference. Before, the bill always died in appropriations, so that was a big hurdle.

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Dr. Burkhart: I tell a story when a legislator says to me, ‘It’s just a few lights,

why does it matter?’ I have a woman who was in our clinic; she was 28 and she

had two kids. She used tanning beds when she was a teenager, and she passed

away at 28 from tanning bed exposure. So that’s a family with two kids and a

husband that is without their mom. That was important to them; it was really

important. A memorable story to my mind, having a young woman pass away.

That’s huge.

Dr. Cronin: Tanning salons are a real problem with young women. I had a

beautiful young woman come in; she had been going to tanning beds. She was

very excited because she was getting married. She was trying on wedding dresses

when her mother noticed the mole on her back. It was melanoma.

The most personal story to me – well, I have a few, but the one that really

struck me – was a young woman who came to see me for a full-body skin exam. I

found a lesion on her, and it turned out to be melanoma. She started crying and

told me her husband had died of melanoma. She was so distraught, thinking she

was going to die as well. It was very unusual for both a husband and a wife to

have melanoma. She told me that they had owned a tanning salon. They tanned

frequently. When her husband developed melanoma and died, she sold the

tanning salon. Now, she hates tanning.

A common argument against tanning regulations is that preventing teens from using an indoor facility will result in unintended consequences. Teens who want to be tan will be doing it on their own or with friends in the basement. Kids will be tanning in the streets, and on the beaches, all without the control and oversight of salon operators

(Boehm, 2011). Conversely, many who support regulations admit that without more

108 stringent enforcement, regulations may not be very effective. The owner of the Golden

Edge salon in Pennsylvania doesn’t bother with parental consent. He claims it is a nonissue for most his 300 daily customers. He explains, “For 95% of the kids who come in here, their parents know. It’s acceptable, the body needs sunlight” (Kadaba, 2005).

Dr. Burkhart: I share stories I hear from my patients about how easy it is to get

into the tanning salons, even when parental consent is required. One said, ‘You

know, I just have my boyfriend sign for me.’ So I share this example about non-

regulation. We have one legislator who is a real conservative – a really manly-

man type guy. In one of the committee meetings, he just stood up and said, ‘You

know I get my nails done every week at a salon.’ And everyone was just like

‘Whoa!’ So this guy, this manly guy that they all know, tells us that while he is

getting his nails done, the person doing his nails doesn’t speak English, and all

these teenaged girls just file in to the tanning beds that they have at the nail salon.

She just points, and they pay their money and go in. There is no education about

the dangers. There is definitely no control or guidance or anything like that. It’s

just some lady who doesn’t speak English.

Cathy, in her role as Director of the Melanoma International Foundation, has worked on prevention and community education issues. But, heading up a small foundation with limited resources, the frustrating lack of results from political advocacy, and a deep desire to help melanoma patients have led her to re-focus her advocacy efforts to patient empowerment.

Cathy: I have shifted away from prevention issues because I find it sort of a

losing battle. I am part of the Governor’s Advisory Board on Cancer, and I don’t

even go to meetings anymore because they don’t do anything. Bruce (Dr. Brod.)

109 and I worked for years together. We went and talked to legislators. Bruce did skin checks on them, and he even found cancers on them. We did so much work, and then the ITA would walk in, sunburned, and say we were against women. We were against women and business. We didn’t want women to have small businesses. In this area of Pennsylvania, it’s a real fast, easy business to get into.

$1,000.00, maybe, as an investment to get the lamps and the studio, and they’re off and running. So the politicians thought we were putting people out of business. And the campaign money came from the ITA.

In Pennsylvania there isn’t any enforcement. Teenagers run tanning salons and let their friends in. Go to a college campus, like Penn State, and every apartment complex has an unmonitored tanning bed. It’s a huge problem. I got so upset when my son went to school there. I wrote letters to the editors – ‘What would happen if someone fell asleep in one of those unmonitored beds?’ The gyms all have them: Gold’s Gym and Planet Fitness. I am not sure what legislation can do with such widespread, unmonitored use.

We did have one program that was very effective. We did it at the local high school in memory of a young girl who died from melanoma. She was a soccer player, an athlete in the prime of her life. She used tanning beds. It was tragic to lose her. Our program was called Prom Pledge. If students signed a pledge not to go to tanning salons for prom, and they took it home for their parents to sign, we would give them a certificate to have their hair or nails done at a salon that didn’t have tanning. What worked best about that was having the parents sign. It was educating parents that tanning was something they needed to worry about. Most parents were more worried that their daughters would get

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drunk or pregnant than that they would get tanned! Tanning was the least of their

worries. But once they were educated, they would call us and thank us and say, ‘I

had no idea tanning was dangerous, I won’t let them go again.’ We did this for a

few years, but it’s hard with a staff of three and a half.

We also talked to kids about the diseases you could pick up in tanning

beds. One derm went around and did scrapings in the beds, and found ringworm

and all kinds of disgusting things. We talked about the peeping Tom stuff that had

been going on. They are just gross places and the people who run them have very

poor morals.

I used to do a lot of this prevention work, but not too much recently. I

have become so involved with stage IV patients and therapies and trying to save

lives that way. I work with all stages, but primarily stage IV. I run a forum; I

moderate that. I explain about pathology reports, and go through all the therapies.

We’re lucky that now we finally have some options for treatment. We do one-on-

one navigation, help people get into clinical trials. We have a new thing – we pay

for travel, transportation, and lodging so they can participate in trials. There are a

lot of misconceptions about trials. It’s a big push of ours, that and getting patients

into centers of excellence. We do what we can do best, but if Bruce needs me, I’ll

do what I can.

Recruiting others to the fight.

I was interested to hear how Dr. Brod recruits others to work with him on tanning issues. He explained his strategy was relational. He reaches out to people one at a time and then he mentors those people to reach out to others.

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Dr. Brod: Well, I reach out to them one by one; that’s what I do. I’ll oftentimes look to see if they will have the interest or the insight, and maybe try to capitalize on that. I wouldn’t say that I go around randomly looking for people to engage in advocacy, so I selectively do it. I think that a good way to engage them is to give them a task to do: a rewarding task, where they feel like they make a difference.

This just came up today; I was working on this.

Our bill sponsor for the tanning bill is having an event Monday in

Langhorne, Pennsylvania, Bucks County. It’s an hour and a half from here, just a little fundraiser, a chicken dinner in Langhorne, PA. To me, I think it’s very important to acknowledge – he’s not someone we have to convince about the issue; he’s our bill sponsor. He’s gone above and beyond to get this deal moving, so it’s nice if a dermatologist goes to his fundraiser and says, ‘Thanks for your help.’ It motivates them; it motivates the legislator to keep up with the issue. You are not just using them; they are not just your horse.

So I found out who the derms are in Langhorne. There are three; I know them pretty well. These three are never involved in advocacy. I called them and said, ‘You know, we could really use your help. The bill is close, and you are a key person in this constituency. You are one of the only dermatologists who is there.’ I explained why it was important. With short notice, on a Monday, the worst day of the week, they’re all going. They said, ‘Yeah we’ll go.’ I think that’s the way to do it – not just to say, ‘You should get involved. You should do this.’ I think that’s a really good way to do it. And then they say, ‘Hey that was kind of neat.’ And they’re a little more likely to do [it] next time. That’s what I do. That’s predominantly what I do.

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You know, we have courses or lectures. You might give a session here or

there, but that’s preaching to the choir many times. A lot of those people go

because they’re already doing it, and they want to learn more to hone their skills.

I’ve never really thought about it, but I do think that’s probably the most effective

thing. And it’s actually kind of neat, because then they’ll ask ‘Oh yeah, what’s the

bill about?’ We did the same thing with another bill in Pennsylvania: we got some

of the psoriasis people involved. Indoor tanning is a good issue because it’s not

controversial; all dermatologists agree. So it’s a very good way to do it, because it

does get people involved who are not usually involved. Your audience has

different levels of interest. People who seem interested I try to plunge them in,

give them grass roots tasks. I ask, ‘Can you reach out to your practice, or your

community, or your medical center?’

Reaching out is important with other states too, because they are going to

be facing the same arguments and the same legislative mindset. The issues are

similar, and helping them understand the political process – I don’t think we do

enough of this. People who are just starting in advocacy need to be able to ask

questions, and not feel dumb asking them. Especially dermatologists – they don’t

want to look bad. Sometimes the best thing is looking bad!

Revisiting Logos, Ethos, and Pathos

“The industry’s audacity was remarkable” (Huber, 2012)

USC Annenberg provides support for a compilation of health related blogs known collectively as Reporting on Health. An author of one of those health blogs, Barbra Feder

Ostorov (2012), interviewed Bridget Huber about her experience writing the Fair

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Warning article on indoor tanning. Asked what led her to write about indoor tanning,

Huber replied:

I am generally drawn to stories that expose that gap between what powerful or

wealthy players say and what they actually do. The industry’s audacity was

remarkable — it’s woven an entire narrative that demonizes physicians and

cancer charities and undermines the mainstream medical consensus that indoor

tanning increases cancer risk. (Huber, 2012).

The audacity Huber refers to becomes evident when one attempts to compare the rhetorical choices each side makes in promoting their claims. Comparing the logos of these competing arguments, the preponderance of scientific evidence makes what one dermatologist referred to as the “junk science” of indoor tanning look especially weak.

While there may be a few dissenters in the ranks, the overwhelming agreement among dermatologists in particular and physicians generally, gives credence to the claim that tanning beds are harmful. There is a clear tendency on the part of the tanning industry to quote selectively, to ignore contradictory evidence, and to resort to semantic shifts such as equating the sun with tanning beds. Using logos, ethos and pathos as a measuring rod can help us to decide which storyteller has the audiences’ best interest at heart, and to choose which rhetorical claims we will accept as being the most credible.

As we have seen, the tanning lobby works hard to undermine the ethos or perceived credibility of their opponents. There are repeated claims that dermatologists are secretly working with sunscreen manufacturers in order to profit from these partnerships.

It is interesting to note that tanning industry representatives don’t specifically name these sunscreen manufacturers. One might wonder whether this is because large private corporations that manufacture sunscreen might be much quicker than dermatologists to

114 respond to such allegations with a lawsuit. Another primary tactic used by tanning lobbyists is accusing dermatologists about being motivated by profit – even though indoor tanning is itself a flourishing 5 billion dollar industry (Levine, Sorace, Spencer &

Spigel, 2005).

The accusation by the tanning industry is that dermatologists individually and as a professional organization are in hidden partnerships with cosmetic and pharmaceutical companies, creating conflicts of interest. It is neither hidden nor unexpected that dermatologists are sometimes hired as consultants by cosmetic and pharmaceutical companies. But within medicine, ethical guidelines requiring acknowledgement of such relationships are the norm. At the AAD Summer Meeting I attended, there were explicit guidelines in place to avoid any appearance of unethical influence. Every speaker from the platform or the audience was required to report any conflicts of interest and to acknowledge any outside revenue source. The same cannot be said of leaders in the tanning industry, who rarely admit their affiliations, and who seemingly create multiple organizations as a means of circumventing the FTC restrictions or unwelcome scrutiny.

In light of such misrepresentation, the credibility and character of those arguing on behalf of the tanning industry becomes suspect.

Finally when considering the pathos, the emotional impact of these stories, one need only remember the stories of women who have been disfigured, who must now live with the threat of a deadly disease, or who have died as a result of tanning. The ITA arguments that small salon businesses would be hurt if tanning bans were imposed truly pales in comparison. Considering Aristotle’s elements of persuasion, there seems to be no contest. So if the indoor tanning industry doesn’t really have a very persuasive argument, why are people still tanning? Despite the gravity of the potential consequences, the

115 weight of scientific evidence, and the credibility of organizations and individuals who advocate against tanning, people are still flocking to tanning salons. The patients I spoke with went tanning for one simple reason—they wanted to be tan. In the next chapter addressing micro-level narratives, patients who are former tanners speak about their actual reasons for using tanning beds.

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CHAPTER 6: INDIVIDUALS AND MICRO-LEVEL NARRATIVES

“I will tell you something about stories…They are all we have, you see all we

have to fight off illness and death” (Silko, 1977, p. 2)

“Melanoma isn’t pretty.” (Diana)

Narratives of health and illness are powerful because even though cultural understandings and socially constructed norms vary, one constant is that we are all corporeal beings. Stories of illness and the body resonate; they are relatable because our lived experience involves embodiment. Illness is often perceived as an unwelcome and premature failure of the body. That is especially true in the case of skin cancer.

Increasingly, melanoma strikes young, seemingly healthy people who are then left with bodies and minds that bear the scars of serious illness due to tanning, an activity that initially made their bodies look and feel good. How does this transition from health to illness change an individual’s story?

Included in the following chapter are excerpts from in-depth interviews I conducted with eight patients. Where appropriate, I have also included comments from the dermatologists who were introduced in the previous chapter. Each of the women whose stories are included in this chapter was willing to talk with me about tanning, diagnosis, treatment, and how having melanoma – the most deadly form of skin cancer – has changed their lives. Although I had a few specific questions, the women I spoke with directed the flow of our conversations. I have included many excerpts from those conversations, some brief and some rather lengthy. These excerpts, like the earlier interview answers from physicians, are presented with a minimum of analysis and interruption, in order to provide readers a sense of the individuals who are sharing their stories. As Frank explained, stories have to be long enough “to allow the storytellers to

117 become not sources but actual presences” (2009, p. 108). My goal was that in addition to a broader understanding of the impact of melanoma on patients, readers themselves would be impacted by the personality, humor, and resolve of each speaker.

I have chosen to organize these story excerpts topically around themes that emerged. I was surprised to find a few topics came up in the interviews again and again.

These women are different ages, have different backgrounds, live in different states and are the patients of two different dermatologists, Dr. Brod and Dr. Sullivan. Yet despite these differences, there were some striking similarities in what they said to me. After transcribing each interview, I organized the comments into the ten emergent thematic categories. Some of these categories were obvious topics; a few were unanticipated; but I believe all ten are worth exploring here.

The themes composing this chapter of patient stories are: initial diagnosis and tanning history; rationalizations; dissonance; addiction; the sick role, physicians and trust; sunscreen; influencing others; scars; knowing; and change. In the first section addressing initial diagnosis, these patients speak about the symptom, concern, or relative that brought them to a dermatologist’s office. They also share their tanning histories and why they decided to begin tanning. For many the initial diagnosis was a surprise. I asked patients to describe their process for coping with an unexpected diagnosis and reconciling their tanning with their skin cancer. Their stories about reconciling also involved old behaviors and new understandings, which are discussed with the next two themes of rationalization and dissonance.

Of the eight women I spoke with, three had been employees at tanning salons.

For one woman, it was a short-lived, after-school job; but for the others, who were employed at the time of their diagnosis, it was not a simple matter to summarily give up

118 their relationships with the people at work. Nor was it easy to give up tanning, despite the fact that they had been diagnosed with skin cancer. Physicians are making the case that indoor tanning may be physically as well as psychologically addictive. The attraction of tanning is discussed in the section on addiction.

The next theme, the sick role, physicians and trust, was an unexpected addition. I was surprised that, without prompting, each woman spoke up about the importance of her relationship with her dermatologist. It stands to reason that these patients would be reasonably satisfied with their doctors, given the fact that their dermatologists had suggested these patients for interviews. But what I had not anticipated was how rooted this satisfaction was in trust and the perception of thoroughness.

The next five themes involve discussions of the post-diagnosis adjustments that each woman has made and continues to make. Because sunscreen came up so frequently in our conversations, I included it as a theme. Using sunscreen is important for skin cancer survivors. Daily sunscreen use is a tangible way to take charge of protecting their skin. Encouraging others to use sunscreen is a pro-social means to help others avoid sunburn that sometimes leads to an opportunity to share their own stories. And because a desire to become tan was the very thing that caused their illness, using sunscreen is a manifestation of a reformed perspective, and a way to please their doctors. Dr. Brod told me his patients are eager to report their sunscreen use to him with comments like, “You are going to be so proud of me!” But sunscreen can also become a contentious issue when husbands or grown children refuse to heed advice regarding its use.

Influencing others is a continuation of the discussion about giving and heeding advice. Deciding how, when, and with whom to share their stories is an ongoing process.

Everyone I spoke with has talked to others about her experience with cancer in an attempt

119 to dissuade them from tanning. The results of their efforts are mixed. Every woman has had people shrug off her advice and continue to tan, and each has been successful at convincing some people about the dangers of indoor tanning. Despite the mixed results, no one I spoke with intends to stop trying. Sometimes, the visible scars from surgery have provided the conversational opening for sharing their stories.

Scars are the next theme. After having their cancers removed, some of these women were left with visible scars. During interviews women described the emotional effort it took to become comfortable with their scars. Many find themselves deciding how much to say when people see their scars and ask questions. Any time one of these women is in the position of answering questions from the curious, encouraging others to practice sun safety, or discouraging someone from indoor tanning, a decision must be made about how much of their personal story to share.

I asked each woman if anything might have prevented her from tanning. Excerpts from their answers are included in the theme on knowing. The final theme is change. Of course, every topic deals with changes in some form including: changes required by illness and the threat of recurrence, changes in behavior, changed perspectives, and changed relationships. I think that perhaps all of those changes are somehow represented in this last theme. Much of this theme involves changed identity. Each woman recognized they had been changed by their illness. They spoke of growth, of resolve and determination. They acknowledged hard-won maturity. They were indeed sadder, but wiser and it was a privilege to interview them.

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Meet the Patients

 Cathy – Introduced in the previous chapter as a patient advocate, Cathy was

diagnosed more than 20 years ago while she was pregnant with her first child.

Cathy is the founder of Melanoma International Foundation.

 June, age 69 – Diagnosed in 2000, former tanning salon manager. Although I

frequently generalize by speaking of the patients as melanoma survivors, June is

the exception. She is the only woman I interviewed who did not have melanoma.

June has had 100 basal cell and squamous cell lesions removed since her initial

diagnosis fourteen years ago.

 Diana, age 31 – Diagnosed in 2003 at age 21, Diana was a former tanning salon

employee. Tired of being nagged by her sister who worked for a dermatologist,

Diana finally agreed to be seen for a skin exam.

 JoAnn, age 52 – Diagnosed in 2005, JoAnn is one of five adult children in her

family. All have been diagnosed with skin cancer. JoAnn is the only sibling with

melanoma, and the only sibling who used tanning beds.

 Liz, age 51 – Diagnosed in 2013, Liz worked in a dermatologist’s office for a

year before having her first skin exam. In that exam three melanoma lesions were

discovered.

 Sheila, age 29 – Diagnosed in 2002, just as she was planning to move away to

attend college, Sheila visited a dermatologist to have a mole removed for

cosmetic reasons and was diagnosed with melanoma.

 Kristi, age 45 – Diagnosed with melanoma in 1998 at age 30, Kristi lived in an

apartment complex that offered free tanning.

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 Stephanie, age 30 – Diagnosed at 17, Stephanie had an after-school job working

in a tanning salon for extra cash. As an employee she still had to pay for her daily

tanning sessions. Stephanie’s mom occasionally joined our conversation.

The Initial Diagnosis

“Get it off me right away. I don’t want them on me it’s cancerous. Get it off of me!”

(Liz)

Therapeutic intervention, the cultivation of a fighting spirit, and a perception of social support in the form of care and concern can contribute to improve well-being and a sense of optimism in a newly diagnosed patient (Hodges & Winstanley, 2012). These patients shared with me their initial experiences of diagnosis. Some were fortunate to have a sense of care and support at diagnosis while others felt alone, struggling to find information and to feel like a partner in their own healthcare.

Dr. Burkhart: I hear a lot of guilt, yeah – lots of guilt from patients. The girls

feel guilty about a lot of things. They feel guilty they had to put their family

through everything, like chemotherapy for a year. They didn’t know it at the time.

They shouldn’t feel guilty, but they do.

Maybe a parent had to stop doing a job for a year to take care of them, the

times when they were not in the hospital. [Or] watching them lose a boyfriend and

have to be comforted because their boyfriend left them because they were going

through chemotherapy. That sort of thing is tough. They feel a lot of guilt about

what they put their families through.

Dr. Brod: You have to spend an appropriate amount of time with patients

initially, talking about their diagnosis, making sure they understand their

prognosis. Most of the melanomas are thin melanomas with a good prognosis. So

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helping them understand how it fits into their overall health, I think that’s very

important.

Cathy

On the Melanoma International Foundation’s web page, Founder Catherine Poole is described as a 22 year melanoma survivor and patient advocate (Melanoma International, n.d.). Cathy shared with me the story of her tanning history and some details about the difficult diagnosis and treatment she endured those many years ago. Growing up, Cathy was outside a lot as a swimmer and horseback rider, but she attributes the melanoma to her use of a tanning lamp on her face and legs.

Cathy: Mom put iced tea on us; we didn’t have any sunscreen. I had tons of

exposure, but that was the one place. I’m sure. I made the correlation a long time

ago. I always quote for people that, ‘15 minutes in a tanning bed is like spending

the entire day at the beach.’ It is just very intense. I’m positive because of the

location of my cancer. I tanned my legs a lot. My sister brought home a tanning

lamp. I mean, that lamp…we used to put it on the table edge and put our legs right

under it. Oh Lord, and stick our face right in it too. I have very pale skin, and

pantyhose didn’t fit me. I had to tan my legs somehow so I didn’t have to wear

pantyhose, because they made pantyhose for short people and I’m tall. I know it

sounds silly, but we wore mini-skirts back then, and I didn’t want to have white,

white legs.

I had this thing on the back of my leg, so I went to the dermatologist. I

was pregnant with my first child, and the doctor was pregnant too. She acted so

scared, I thought I was going to die – and that’s how I was being treated. Because

of my pregnancy, the dermatologist was too nervous to do a biopsy. She sent me

123 to a general surgeon, who did a very deep biopsy. They sent it to the pathology lab and after two weeks, I still hadn’t heard anything.

I was so anxious, I couldn’t eat; couldn’t swallow. I was thinking, ‘Oh my

God, I’m starving my baby.’ So I finally called the pathology department and said, ‘Will you send it to the University of Pennsylvania? Because you obviously don’t know what you are doing!’ The same day they sent it, the doctor at Penn looked at my pathology and said, ‘Yes, it is melanoma.’ And he gave me all the particulars, which I didn’t really understand. Then I had to choose an oncologist, and go back for a wide excision.

So I went on this journey, and I went to a doctor at one hospital and I didn’t like it there at all. They said that, once the baby was born, I couldn’t breastfeed, which was very important to me. I switched to Penn, and I could breastfeed, and they were very family oriented. I liked them and I liked my oncologist, Dr. DuPont Guerry, who eventually became my co-author

(Melanoma: Prevention, Detection and Treatments, 2005).

Then I had to have surgery. I was like, ‘Take my whole leg; I don’t care. I just want to live.’ They wanted to put me in the hospital for a week and put me under general anesthesia, but I said no because of the baby. I finally found a young surgeon who was willing to go along with my plan to do it without general anesthesia. So I had lots of local anesthesia, and I was awake for the whole procedure. Literally, they used tools – just like wood-working tools – to plane off pieces of my leg. The nurse who was holding my hand said, ‘Oh, melanoma, I know a doctor who died of that a couple of weeks ago.’ I really appreciated her.

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I was on crutches for the rest of my pregnancy. I fell over a lot. It was very hard,

and I couldn’t exercise to help me deal with the stress of recurrence. After I had

my baby, they wanted to do pathology on the placenta, because melanoma is the

one cancer that actually gets through the placenta. I decided [that] when I got

through all of it, I was going to write a book. I was a writer anyway, a health

writer. I had written a book previously about nurse-midwives. I went to the

library. There was one book about a woman who died from melanoma and I

thought, ‘That stinks!’

June

June loved her job as manager of a tanning salon. She noticed a mark that appeared on her skin every time she was tanning so she initially went to see a dermatologist because of this red spot. After her diagnosis, she was relieved to hear that her type of cancer was “the best kind to have.” Later she transferred to Dr. Brod and 12 years later, she still remembers what he told her when he discovered several squamous cell carcinomas.

June: When I would be tanning, a red spot would come out, and then it would go

away again. So I thought, ‘Well, I am going to go to the dermatologist.’ He said it

was a basal-cell cancer, and that I would be his patient for the rest of my life. I

went back to him every six months, but he didn’t examine me fully; he was

missing a lot.

Next time, I had something on my arm that I thought was suspicious, and I

asked him to check it. He removed it and then said to his nurse, ‘I don’t think this

needs to be sent away.’ I looked at him and he said to me, ‘…unless you want me

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to.’ So I said ‘YEESSS,’ and that was the first squamous cell cancer, and that’s

when I really started getting scared.

I changed dermatologists and came to Dr. Brod. The first time he saw me,

he took 11 off and he said to me, ‘I know I am sending you home with cancer.’

Dr. Brod: Oh yes, she probably had 30 or 40 squamous cells. I said, ‘We can’t

remove all of them today, but you’re going to be okay. We’re going to see each

other frequently.’

June: When I first was diagnosed, I made the connection between the cancer and

tanning, but it wasn’t enough to scare me until I had the first squamous cell.

When it was just basal, everyone said, ‘If you’re going to have skin cancer, this is

the best kind to have.’ They made it sound like absolutely nothing, so I continued

to tan – until I came to Dr. Brod, and learned how serious it truly was.

Diana

As a kid, Diana played outside a lot. She remembers her mom putting sunscreen on her “head to toe.” During high school she started going to the tanning parlor for special events like prom and homecoming. From the age of 16 until she was 21, Diana tanned at least twice a week.

Diana: My sister worked for a dermatologist; otherwise, I never would have gone

in. I would never think of having a skin check. I thought they were for elderly

people. My sister noticed something on the back of my thigh that she said looked

weird and really dark. I was like, ‘Really? Whatever.’ But she said I should come

in and have them check it out. I was reluctant; I kind of rolled my eyes and said,

‘Okay, whatever, I’m going to prove you wrong.’ I mean, I was only 21; it

couldn’t be melanoma.

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Then I go in, and the doctor puts on his goggles and says, ‘Yeah, that

definitely needs to come off.’ He took it off that day, and two weeks later I got a

telephone call. They said it was stage two melanoma. ‘Like, no way!’ I was

shocked. I mean, first I was rolling my eyes just going in. I did it just to make my

sister happy. You know, that saved my life. Because 18 months…if I would have

waited 18 more months, I was told it would have been in my bloodstream and

lymph nodes. So that was a close call.

I had to go in for a second surgery to get more of it taken out. They said

they got it all. It was scary, because you don’t think you will hear “cancer” until

you’re older. No one likes to hear cancer at 21. It was an eye opener.

Liz

Liz started going to tanning beds 20 years ago, but she hasn’t used them for a couple of years. When she was younger she was reassured by the fact that well-educated people were running salons. Now, she works in the office of a dermatology practice and she has learned about the dangers of tanning. She also knows that the doctors she works with have strong feelings against tanning.

Liz: I used to go to tanning beds before vacations, to get a little color so I

wouldn’t burn. There was a local tanning bed, and I would go in and see friends

doing it. I was a little nervous at first. At my gym, I asked the guy if I could use

one of the tanning beds, and he said they were part of our gym membership. He

showed me how to do it, and he said, ‘You’re kind of fair, so you probably

shouldn’t do it for more than 7 minutes.’ So that’s what I did, and I didn’t put any

lotion or anything on.

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There were people who were educated running those tanning beds. I felt like I was in a coffin. I couldn’t even shut the lid because I didn’t feel comfortable. But I liked – this sounds terrible – I, liked the way it felt. It was warm and I like sunshine. It makes you feel good. And I did it a little bit more and a little bit more. I just thought I needed a little color.

After I started working here, Dr. Brod asked me about using tanning beds.

I knew he was against it, and they were really talking about it a lot. If you go to one, you get in trouble here. If you have a tan, you get in trouble (laughs). I hadn’t really thought about it, but after talking to him I knew it wasn’t good. It really increases your chances for cancer a lot. That scared me, and made me reflect on why. How many times had I gone into that bed…and why? Just so I had color?

Why didn’t I just wear my sunscreen and not worry about it? I guess being vain, just a little vain.

I had a skin exam. I had never had one before; I worked here almost a year before I went in for a skin exam. They found three melanomas. It was really scary. It didn’t sink in until I was in the truck with my husband. My husband just happened to be picking me up that day, and I got in the car and said, ‘I have three melanomas.’ Then it like, freaked me out. I know they were stage 0, but just knowing that I had them really scared me.

Then I empathized with patients who come in here and when they find out they have a melanoma, they want to get it off. That’s how I felt: ‘Get it off me right away. I don’t want them on me; it’s cancerous. Get it off of me!’ So it really opened my eyes. I just had to have another one removed, so that’s four melanomas and one basal-cell, and that’s a lot. That’s a lot.

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JoAnn

JoAnn, along with her 3 sisters and brother, was always playing outdoors or at the swimming pool. She remembers being sunburned all the time and not even the blisters from her sunburns kept her indoors. When a tanning salon opened in her neighborhood, she figured it would be a good idea to get a base tan.

JoAnn: When I was growing up, my mother always told me I shouldn’t be in the

sun because I have so many moles. I was a teenager, and I didn’t listen to my

mother. I thought, ‘What does she know?’ I thought getting a base tan was a good

idea because I always had to tan little by little, because I am so fair and freckled.

And once I had kids, I just didn’t get out that much, but I still liked to get a tan.

Especially on my legs – it makes your legs look slimmer.

I thought I should get my skin checked because I have freckles, and

because I was a sun worshipper. My friend from work recommended Dr. Brod

The first time I came in, he found a melanoma on my thigh, and I had one on my

hip and my chest. Later they found another, so that makes four. When I was

diagnosed, I associated it with all the tanning, not just the tanning beds. But as I

got older, I realized my sisters never had melanoma, and they never went to

tanning beds. My twin sister, two older sisters and my brother all have the same

kind of skin that I do. We have all had skin cancer, but I am the only one with

melanoma. None of them has had melanoma like me, and I’m the only one who

went to tanning beds.

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Sheila

Sheila didn’t tan very much; in fact, although she was initially excited to tan, she explained that she was concerned about the tanning beds being somewhat unsanitary. A visit to the dermatologist for cosmetic reasons led to a skin exam and her diagnosis.

Sheila: For my 16th birthday, I had a friend who gave me 10 tanning sessions. I

was like, ‘This is awesome’ I used all 10 and I got two more or five more; it was

12 sessions or 15, I can’t remember. I couldn’t deal with doing it all the time. I

got a little grossed out by it, about tanning and being sanitary. The salon I went to

stopped carrying the beds, so I just stopped.

At first, I went to another dermatologist because I had these moles on my

neck. I wanted them removed; it was totally cosmetic. When I got there, she said,

‘Well, let’s do a skin exam too.’ So we did that, and she saw a mole she didn’t

like. She found a melanoma on my arm. After that, I researched for a

dermatologist and Dr. Brod obviously came up. Not that she wasn’t a good

dermatologist, but I just came to Dr. Brod and he found a couple more.

This was the summer right before college. I had to come back from

college when I got the results. Then they found some more, and they told me it

was melanoma and how high the risk was. How wild that was, because I had

never really heard of that before. It was early; they didn’t find it at a late stage, so

they caught it in time, but it was a really big eye opener for me. I didn’t take it

seriously. I didn’t realize how scary it was until I had it. I got melanoma. I’m

lucky I went in for the cosmetic thing. If I hadn’t gotten those removed, this could

have turned into stage whatever and I’d be sitting here…or not sitting here. It very

well could have happened.

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At first, I didn’t connect it with tanning. I knew tanning wasn’t good, and I

was glad I didn’t do any more. Later, when I had another melanoma, I thought,

‘Oh my gosh, I did tanning beds at 16.’ ‘Let’s just end your life sooner,’ that’s

what it comes down to, and that’s what it felt like I was doing when I thought

about it.

Kristi

Kristi started tanning in high school. Later, as a newlywed, she moved with her husband to an apartment complex that offered residents free tanning. When she was diagnosed with cancer, she used her training as a nurse to choose a course of treatment.

Kristi: I started tanning in high school, when I was a senior, because it was the

thing to do. Not year round, but in spring to get ready for summer. When I got

married, we moved into our apartment and they had free tanning. I still didn’t go

year round, but probably all spring and most of summer. From the time I was 18

until I was 28, about ten years, I tanned every spring and summer. You couldn’t

go more than once a day. You could go every day, but they had some rules.

Probably 20 or 30 minutes was the max. I would do the max. You could go like

30 minutes every day if you wanted. I didn’t go every day, but probably

something like 3 times a week. You had to sign in, but you didn’t have to pay. It

was kind of a perk for living there. We also belonged to a gym that had tanning. It

was a perk for belonging to the gym.

I was diagnosed at 30. I had a mole on my leg; I don’t know how long it

had been there. I guess that’s kind of silly – I should have been paying more

attention. One day I was shaving and it started bleeding. It was about the size of a

pencil eraser, and it looked really black. The color was concerning to me, so I

131 thought it should be looked at. I didn’t know who to see. With a lot of the dermatologists in my area, it took a long time to get in to see them. I just picked someone near my house who was covered by my insurance.

In December, he removed the mole in his office and sent it out. I went back to have the stitches removed, and he said, ‘The pathology report came back and it is melanoma.’ I was a nurse at the time, and I thought, ‘Melanoma, okay, what do we need to do?’ He said I needed to come back in six weeks and have more tissue removed to make sure there isn’t anything else going on. So the next time, he went in a little deeper and the pathology came back clear. So I said, ‘This is cancer; is there anything else I need to do?’ And he said, ‘No, everything will be fine.’ That didn’t sit too well with me. I asked my husband, who was also a nurse, to ask some of the doctors he worked with if we needed to do something else.

We saw an oncologist for a second opinion. Because it was kind of deep, he sent me to see a surgical oncologist. Because of the depth, the surgeon wanted to do a resection and biopsy. I had the surgery in March, and the waiting was kind of nerve wracking. It was just worrisome and anxious and frustrating. I was frustrated with the first dermatologist I saw. If I hadn’t been a nurse with a medical background, we would never have known. I would never have had the surgery. The surgeon didn’t quite explain how awful the hole in my leg was going to be. It is at least as round as a tennis ball, and it goes in a pretty good chunk. I wasn’t prepared for what it was going to look like. It’s a big giant hole in my leg.

As soon as they diagnosed me, I said, ‘I know where I got it, I know where it came from.’ My husband and I did our research to see how serious it was. Doing

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research about melanoma – what it was and where it came from – I thought,

‘Bingo!’ I haven’t had any more melanomas. My oncologist cleared me after five

years. When I moved, I knew I needed to follow up with a dermatologist because

of my history with melanoma. It took a while, but once I got in to see Dr. Sullivan

she told me I should have been seeing a doctor every four or five months. I will

need to have check-ups for the rest of my life.

Stephanie

After Stephanie’s uncle died of melanoma, her mother decided the whole family should be checked by a dermatologist. Her mother, father, and brother were fine, but

Stephanie had melanoma and needed surgery.

Stephanie: My parents found out first; the doctor called them and they waited a

couple of days before they told me. It was a shock, needless to say. It wasn’t

something I wanted to deal with. At first, I didn’t know much about it – really the

only word you are hearing is “cancer.” My mom didn’t take it very well. It was

nerve-racking for her, and for my dad too because the uncle who died was my

dad’s brother.

Stephanie’s Mother: It was pretty bad. I can still remember, after all these years,

where I was sitting when I heard. I remember we had gone out to get Stephanie a

car that day, a used car. We didn’t get home until 8:30 or so, and there was a

message on the answering machine to call the doctor at his home number. I

called; I was sitting by the bed and he told us that we had to come back in and that

they were going to do further tests…it wasn’t good. I knew it was from the

tanning bed, because normally she isn’t that dark. But she worked at the tanning

salon, and she got so dark.

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Stephanie: I worked at the tanning salon in the spring, just for a few months. It wasn’t that long. It was just a little after-school job, you know, to get some extra cash and whatnot. We didn’t even get free tanning; we had to pay for it. I stopped going for a while, but I went back in September and October for Homecoming.

I’m fair; I have a real fair complexion, and Homecoming was in October. I was diagnosed that December. The doctor told me tanning was probably the reason.

The first five years, you know, they say if it is going to come back, it will be in the first five years. Every time I went back, it was not fun. I was going every three or four months. I was 17, 17, and 18, even 19 and 20. You were getting out of high school and you had your whole life in front of you, and I was sitting. Here it is, you’ve had a reality check. When I was 18, I graduated and went to college.

My first year, I was trying to do the Vet Tech program, but I ended up having to drop out. I had to go to the doctor so much, and I had so many stiches that I couldn’t do the things I needed to do in lab, like lift up the dogs. I had stiches, and

I had to miss so much because I was constantly going to doctor’s appointments.

Because it was on my stomach, I needed sonograms every 4-6 months, and I was going to the doctor who did the surgery and to the dermatologist.

The first five years of constantly going to the doctor, and having stiches the first year, [were] really tough because I couldn’t do the things I wanted to do; couldn’t do the things I needed to do. You get sick of going to the doctor all the time, being cut on all the time. It seems like a never-ending process, and you think, ‘If I just didn’t go into that tanning bed…’ I was furious that I had to stop doing what I wanted to do. You get to the point when you just say, ‘Why me?

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Why at this age?’ I understood why I had to drop out of the program, but I was

furious. I was mad, mad about everything.

Rationalizations

“I thought, oh you have to die of something.” (Diana)

Dr. Sullivan: I’ve heard every rationalization for going to the tanning bed and

tanning I think there is. It is especially hard for young women to give up tanning,

even in the face of a melanoma or severely dysplastic nevus. I have had patients

under the age of 20 that refused. I spend a lot of time talking with their parents,

their other physicians, and try to convince them that it is lunacy to go to the

tanning bed with melanoma.

Dr. Burkhart: I think a lot of them…well, if you want to believe something, you

will use any and every reason to believe in it. And if you don’t want to believe in

something, you will use any and every reason to not do it. They go into the

tanning salon and they get a lie that it’s not harmful, or that it’s actually

protective, and they are going to believe it. The salon owner gives them the

opportunity to believe it’s safe, and they grab on to it – even if every doctor, their

parents, and everybody else says it’s not safe.

To a non-tanner, the idea that a person who was diagnosed with skin cancer would return to tanning is almost unfathomable. Why would someone who knows tanning causes cancer, someone who has had a personal experience with cancer ever go

135 back to it? Any health-jeopardizing behavior might seem foolish to someone who was not personally engaged in the behavior. But, as an insider, a partaker, one may find collective support from other insiders for those same behavioral choices. Rationalizations provide individuals with the justification to act in ways that might seem irrational to outsiders who don’t share the same cognitive constructs. Alan DeSantis (2003) chronicles the saga of a group of cigar aficionados who routinely gather in a cigar shop for smoking and socializing. DeSantis makes the case that these conversations routinely involved rationalizations for smoking that served the needs of the group by reducing the cognitive dissonance that otherwise might have resulted from anti-smoking messages. In much the same way, tanning promoters craft arguments to refute or undermine medical evidence, and those messages are willingly embraced by tanners who are looking for what DeSantis calls a “linguistic defense shield” (p. 433).

After spending three years capturing the conversations of cigar store regulars,

DeSantis identified five recurring arguments that bear a remarkable categorical similarity to pro-tanning arguments. These pro-cigar arguments were: (1) all things in moderation,

(2) health benefits, (3) cigars are not cigarettes, (4) flawed research, and (5) life is dangerous (DeSantis, 2003, p. 447). Although DeSantis identifies these as collectively crafted, a unique invention suited to the needs of the cigar store regulars, note how this same inoculation approach is used by tanning advocates.

All of the examples I have included below are available on the ITA website

(http://www.theita.com/). The only parallel rationalization not specifically addressed on the ITA website is number (5) life is dangerous. This rationalization showed up in interviews however, and the following comments from Diana and Sheila are an indication of how such rationalizations are internalized by tanners.

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Diana: Yeah, I’ve heard that everything gives you cancer. I also used to smoke

when I was a teenager. I thought, ‘Oh, you have to die of something.’

Sheila: I figured, ‘Everything gives you cancer nowadays.’ We have all these

people saying, ‘Oh, that’s really bad, or this is really bad.’ People don’t know

what’s true, so they just make their own judgments based on the people around

them.

Earlier, we saw evidence of all of these rationalizations showing up in the popular press online forum, and these themes were also reiterated in the sales pitches of salon employees. (1) All things in moderation – “We, of course, tell people that moderation is the key and always avoid over exposure or sunburns.” (Quote from John

Overstreet, President of the Indoor Tanning Association). (2) Health benefits – The

Indoor Tanning Association lobbies for further research on the health benefits of indoor tanning, especially benefits related to vitamin D. (3) Cigars are not cigarettes, (or tanning beds are not the sun) – Indoor tanning is safer than exposure to the sun because it is a controlled environment. It should be noted that this particular argument represents a utilitarian semantic shift. In this case, the argument is made that tanning beds are not the sun; at other times the sunlight and tanning beds are framed as interchangeable concepts, identically good and natural. (4) Flawed research – ITA accused researchers at the Mayo

Clinic of speculative leaps and disputed their research reporting the link between melanoma and tanning. According to the ITA, there is no consensus among researchers that melanoma is related to UV exposure.

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Tanning and Dissonance

“I put people in every day while knowing that I had skin cancer” (June)

Cognitive dissonance describes the uncomfortable, unsettled feeling that results when one’s beliefs conflict with their behavior, or when one’s ideas about truth are incongruent with emerging evidence. When cognitive inconsistencies become sufficient to cause discomfort, one becomes increasingly motivated to reduce the dissonance.

Harmon-Jones (2002), writing about cognitive dissonance and persuasion, suggests that cognitions spur actions and behavioral choices are informed by relevant cognitions.

When information surfaces that contradicts the cognitions that have been used to guide behavior dissonance results. When this happens, an individual may be motivated to find ways to think about, or process the information that either supports or rejects their original commitment (Harmon-Jones, 2002).

Researchers using the theory of cognitive dissonance to examine the motivational constructs of current and former tanners argued that tanners who are experiencing conflicting cognitions can reduce the resulting tension by using cognitive rationalizations.

The authors identified three categories of rationalizations: (1) Worth It, (e.g. It is more important for me to get that tanned look than worry about skin cancer.); (2) Skeptical,

(e.g. Tanning bed use can’t be all that bad for you because many people who use tanning beds live long lives.); and (3) Danger Ubiquity, (e.g. Tanning bed use is no more dangerous than lots of other things that people do.) (Bannerjee, Hay & Greene, 2013 p.

580).

Despite efforts to educate the public about the dangers of indoor tanning, it is clear that simply supplying correct information that contradicts the cognitions or rationalizations for tanning is not always sufficient to produce dissonance leading to

138 behavior change. Researchers conducting a large study of tanning behavior at Indiana

University found students to be quite knowledgeable regarding the risks, including the cancer risks, of tanning. Tanning remained popular among many of the students despite the fact that they were familiar with the dangers (Knight, Kirincich, Farmer & Hood,

2002).

For some, learning about the dangers of tanning is sufficient. For others, the cost of maintaining a commitment to their original course of action becomes too great. Diana,

June, and Stephanie all worked in tanning salons. Stephanie’s stint as a salon employee was short-lived.

Stephanie: I was16 when I first started going, and my mom had to sign for me.

She had to say it was okay for me to go and they wouldn’t be held liable, or

something like that. I started working there when I was 17. I didn’t really hear

about any dangers. Some friends from school told me about someone who opened

their eyes in a tanning bed and hurt them. It wasn’t from my salon. My salon was

one of the stricter ones. They had restrictions. Even if you worked there, you

could only go in once a day. I think the longest you could go was 30 minutes, or

something like that.

Diana and June were long-term employees and each of them experienced some degree of cognitive dissonance during the process of reconciling new information about tanning with familiar and well-loved former patterns of thought and behavior. The dilemma of dissonance for melanoma patients working in tanning salons is multiplied by the physical pleasure from tanning and the emotional connections to co-workers and clients. The first discomforting thoughts about tanning and melanoma began at diagnosis when the doctor asked about their tanning history, and they increased as June and Diana

139 continued to learn about their cancers. The truth about the dangers of tanning contrasted sharply with the sales pitches and health claims being made at their salons.

Diana: Um, they don’t really talk about melanoma at the tanning salon. It’s not

really a good seller (laughs). For people who were concerned about getting skin

cancer, we would say, ‘Just rotate, and then you’ll be getting half the light.’ It’s

just so silly; we would tell people, ‘In the morning do the bed, then jump out and

do the spray, and then the next day do the bed again and you will have the best tan

ever.’ I mean, they tell you; we told people, ‘It’s good for you. You’re getting

natural vitamin D,’ and things like that.’ All kinds of things: ‘You know, of

course, it’s great to look tan all the time, right?’ No, melanoma is like a cuss word

at the tanning beds; you don’t say it. If somebody said they have it, they

automatically said, ‘Oh, that’s from outside tanning; that’s not from our tanning

beds.’ We said, ‘You will get vitamin D,’ and, ‘It’s good for you;’ ‘It helps you

relax;’ ‘It’s good for weight loss because the ultra-violet rays affect your thyroid

to speed up your metabolism.’

One of the things we used to tell people to sell them at the tanning salon

was that they needed to get a base tan so they wouldn’t get burned when they

were out in the sun. But that doesn’t even make sense, because you wouldn’t get

burned if you wore sunscreen. So they came in, and people probably thought they

would never get skin cancer…but they do.

June: We were trained to say…People would ask, ‘Is this worse than the sun or is

this better?’ And I would say, ‘The sun is worse,’ which is not true. I told people

tanning was the lesser evil because we controlled the amount of radiation they

were getting, and with the sun, you can’t. And vitamin D – I told them, ‘Vitamin

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D is really good for you, and everybody looks better with color.’ When I was

tanning, I would go into what’s called a high-speed bed. We were told it was

safer; it’s not. When I told the boss I was getting skin cancer, she said, ‘You’re

not getting it here.’

June, who managed a tanning salon, tried to apply the things she was learning in her dermatologist’s office by bending the rules at work and refusing to let just anyone tan. June loved her job, but she struggled at times trying to reconcile the conflicting feelings regarding her boss, the owner of the salon.

June: Dr. Brod really talked to me and told me the seriousness of this whole

tanning salon. That was hard, because I was the manager. I put people in every

day while knowing that I had skin cancer. But there were some people I refused to

put in. If they came in and said they had melanoma but it was gone I told them,

‘In good conscience, I can’t put you in a bed.’ Also, instead of telling people,

‘Tanning is the lesser of two evils,’ I would tell them, ‘In the end, if you go into

tanning beds, you are going to get hurt.’

When I knew people had skin problems, I said they were going to wind up

with more. I did try to help people. I can’t say that for people who walked in and

wanted to tan that I would say anything, but for people who told me they had a

problem, I said they would wind up with more.

If I would have called the boss and told her I refused to put someone in,

she would have told me that, ‘You’re the employee, and that’s your job.’ So I

never did that. One time, I did call. I would not put in a kid under 16, even with

the parent’s signature. The boss said, ‘Well, if their mom is along, go ahead.’ I

loved my job; I loved my customers. I was with them for 23 years. The boss’s

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daughter and I became really good friends. But even she says, ‘Who tells you this

is from a tanning salon?’ And I tell her, ‘I never laid naked out in the sun!’

Dr. Brod says I have the most damaged rear-end that comes in. And also my

breasts; well, you know that comes from tanning salons.

Vicki: Did the boss change anything when you were having all those cancers

removed?

June: No, no absolutely not.

Vicki: Because she believed it was safe?

June: Yes…Or the money, that almighty dollar.

June was eventually forced to leave her job because of an accident unrelated to tanning. She remains friends with several salon employees.

Diana worked at the tanning parlor for two years after her diagnosis. When asked if she thought the person running the salon knew of the risks, like June, she was reluctant to believe someone would intentionally subject people to such danger. And like June, her answers seem to indicate some ambivalence regarding the possibility that those in power were aware of the risk and sought to divert attention from the potentially life-threatening consequences of tanning. Even after her diagnosis, Diana continued to tan until the dissonance became too uncomfortable. At that point, she opted to leave quietly rather than admit to, what felt to her like an addiction.

Diana: I didn’t want to hurt anyone’s feelings, so I just told them I was going

back to school. I was honest with the manager, but I was a little bit embarrassed to

say, ‘There’s too much temptation here.’ They look at you like you are crazy

because they don’t think they are going to get it. I don’t honestly think they know

how dangerous it is. I would think that if anyone knew, they would be horrified

142 and shut the beds down if they truly knew. Yeah, I think it is just for lack of knowledge. Yeah that’s the key – if they really truly knew and understood, or if someone close to them, maybe it happened to them, then maybe they would reconsider owning it, you know?

The only warning we had was about goggles. The only thing we warned people about was that, if they didn’t wear their goggles, they could get cataracts when they were older. It’s almost like that was a diversion from the skin cancer.

‘Well, let’s just talk about the eyes.’ And there was a quick fix for that: just wear goggles and you could tan; wear goggles and you’re fine. All the time, people wouldn’t wear them. No one wanted raccoon eyes.

Vicki: Diversion?

Diana: Yeah, that’s their diversion so you don’t think about the worst side effects.

Vicki: Did you receive any training?

Diana: No – oh wow, no, we didn’t do any training. Just about how to clean the beds and check people in. It’s funny how they are shaped like a coffin. I think that would be a good picture for an article. Put flowers all around a tanning bed and have someone lie there like this (she crosses her arms over her chest). I’ve thought about it a lot.

Vicki: You are the third person today who has mentioned a coffin.

Diana: After my first melanoma, I was in denial. I thought, ‘Well, I got that one off; I’m sure I won’t get another one.’ So I would sneak tanning in here and there.

When I admitted it to the doctor, he scolded me and said, ‘If you have already had melanoma, the chances are you are going to get another one. You don’t want to

143 speed it up by using tanning beds.’ I thought I would be fine to just get my tan started before summer. But when I told the doctor, he said that it only takes 10 times in a tanning bed to change the DNA of a mole. I kept getting more educated, and I think that’s really key – just educating people.

It wasn’t enjoyable anymore. I used to look forward to lying in the bed, feeling the comfort of the heat. It was a good way to wind down at the end of the day. Then, when I returned a couple of times after that, I was very scared and I felt so guilty. Walking back there, I thought, ‘I hope nobody sees me.’ My sister

(who worked for the dermatologist) was like a Nazi about it. She was constantly checking up on me. I was working in the salon after my diagnosis, and she stopped by to say hi. One of the girls told her, ‘She’s in one of the beds; she should be out in a minute.’ I was like, ‘Oh no! I forgot to tell everyone.’ They all knew, but they didn’t think it was a big deal. Then my sister came in, and that was probably the last time I was in the bed, because she made me cry. She said, ‘You know, you don’t want to die just because of being tan. You should know better; your doctor would be really upset with you.’

I definitely felt conflicted working there. We had the spray tan thing, so I thought I would stay for that. Actually, the temptation was too much; I just had to leave. I had to get away from the whole tanning scene. Because you know, when you start at 16, it almost becomes like an addiction. An alcoholic shouldn’t work in a bar; neither should a tanner work in a salon. It’s too hard; everyone else around you is tan and they are all relaxed about it. When you work there, they want you to look tan for the customers, so yeah, I had to say goodbye.

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Dr. Brod: I try to talk about their history and their behavior every time. You can usually tell if they’re still tanning. I say, ‘Look, I don’t want to isolate you.

You’re coming here, but we can’t treat everything. Melanoma can be slow growing, or it can be fast. We can’t do it all; we need you to be involved in taking care of yourself.’ I say, ‘Please, don’t just rely on me to find it; it doesn’t work that way all the time.’

Some of them I try to help like that. Or I analogize it to smoking and tell them, ‘There really is no safe tan.’ I remind them in different ways why they are there. I might say, ‘The melanoma you had, for all intents and purposes it should be gone, but you’re at risk for developing others.’ I can say, ‘I know you’re not tanning now and that’s a good thing.’

Dr. Sullivan: I think that people have to be told bluntly how much this can increase their risk of developing skin cancer, not only melanoma.

Addiction.

“An alcoholic shouldn’t work in a bar, neither should a tanner work in a salon.”

(Diana)

Dr. Cronin: I live in Florida, the sunshine state. It is hard to believe that people would need to use a tanning salon in the great state of Florida, because the sun is everywhere. But there seems to be a tanning salon in every strip mall. There are probably 25 in our community. (Author’s note, according to a 2012 Fair Warning article, there are more tanning salons than McDonald’s restaurants in the United

States) People will tell you they use salons because it’s easier and quicker. Some have been told it’s safer than the actual sun, which is obviously not true. I tend to think it’s because it’s addictive. They find it gives them a sense of well-being.

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They come out feeling good, and then get sold a package deal – more opportunities to tan.

You get addicted to something that is bad and you make a lot of denials; there are reasons why you continue. It makes you feel good; you like it when people comment. The part I hate the most is when people say, ‘You have such a nice tan; you look so healthy.’

Dr. Sullivan: I find that most people over time learn to tone down the tanning addiction. Parents have a really easy time giving up tanning. When people have a severely distorted body image and/or addiction to tanning, I usually try to work extra with these patients and, in some instances, have suggested counseling.

Both Diana and June told me stories about customers whose tanning was excessive, even by the standard of tanning salon employees.

Diana: When I worked at the tanning salon we would encourage people to tan more and more until they hit the max. But even that wasn’t enough for some people – they would try to sneak in twice a day. That would be me back in the day, going once in the morning and then again in the evening. Elderly women would come in, and their skin looked so leathery, so wrinkled. They were tan, of course, but they weren’t attractive. I mean, they could have been. I used to think to myself, ‘that’s a shame, that person would be a lot more attractive if they didn’t have this tanning addiction.’

June: The owner of the salon is so dark and looks so fake. She – oh my – she is in her 70’s. People who walked in super dark? They bothered me. People would walk in and they were leather, they looked just like leather. We had one woman

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six days a week, year after year after year. Sundays, when we were closed, she

finds another place to go.

Folks like those described above, or the online responder mentioned earlier,

Grancel Fitz, who spent two stints in rehab, are sometimes described as “tanorexic.” A

BBC reporter (2006) noted an increase in images of tanned celebrities and coined the term tanorexia to describe a preoccupation with the desire to be tan (Cited by Heckman et al, 2008). Beyond a desire to appear tan, frequent tanners may be incentivized by the addictive properties of UV exposure (Shaw, Smith, Heckman & Feldman, 2012).

Diana used the term “addiction” to describe her desire to tan and her battle with temptation that eventually led her to quit her job. There is mounting evidence that in addition to psychosocial dependence, tanning addiction can also be physiological. Given the realities described above, of leathery and wrinkled skin, the most dedicated tanners seem to be motivated by something other than appearance concerns. For a percentage of tanners, their experience with dependence meets the Diagnostic and Statistical Manual of

Mental Disorders (DSM IV) criteria for substance-related disorders (Mosher & Danoff-

Burg, 2010), and frequent tanning may result in the acquisition of compulsion-driven, addictive behavior (Lim, James, Rigel, Maloney, Spencer and Bhushan, 2011).

The following examples provide evidence that addictive mechanisms likely play a role in excessive tanning behavior. UV exposure can lead to the release of opioid-like endorphins (Shaw, Smith, Heckman & Feldman, 2012). Individuals who are dependent on tanning have a higher incidence of anxiety and depressive symptoms and a higher likelihood of smoking (Mosher & Danoff-Burg, 2010). Adolescents who are frequent tanners are more likely to engage in other health-compromising behaviors such as recreational drug use (Lim, James, Rigel, Maloney, Spencer and Bhushan, 2011). Mood-

147 enhancement, relaxation, and pain relief can result from UV exposure and reinforce tanning behavior (Shaw, Smith, Heckman & Feldman, 2012). When college students who were indoor tanners were given the CAGE (Cut down, Annoyed, Guilty, Eye- opener) Questionnaire, typically used for alcoholism screening, 30 percent met the criteria for addiction (Mosher & Danoff-Burg, 2010). Increasing tolerance requires more time to be spent tanning to achieve the same results, and withdrawal symptoms similar to those of opiate withdrawal occurred when volunteers were given naltrexone (Lim, James,

Rigel, Maloney, Spencer and Bhushan, 2011).

Although they acknowledge that tanning leads to the release of feel-good endorphins, the JCTA calls the idea that tanning is addictive a myth. “Tanning is addictive, so is eating, drinking, breathing, sex…Calling tanning an addiction is a bit of a distortion on something that’s natural and intended” (Tan Responsibly, n.d.).

The Sick Role, Physicians and Trust

“His patients are everything to him, they really are and it shows.” (Liz)

For the melanoma patients I interviewed, their initial response to the unexpected interruption of illness was often to minimize the seriousness of their condition. Later, when considering the real possibility of recurrence, some women became overly cautious, afraid to go outside and hiding from the sun. Eventually livable routines evolved, informed by an understanding about the seriousness of the disease, and a realistic approach to mitigating risk. The women, once they achieved this equilibrium, typically practiced general sun safety, used sunscreen daily, performed regular skin self- checks, and routinely scheduled visits with their dermatologist for skin exams. These routines allowed a measure of control but they were also a daily reminder of their cancers.

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Dr. Brod: They want to be acknowledged; they want to feel like they matter and

someone cares about them, because they are scared. It can be very isolating. If

someone says, ‘I have lung cancer,’ we say, ‘That’s too bad; can I do something

for you? Bring you dinner?’ But skin cancer, which can be serious, might be more

isolating because no one is really going to reach out you. Maybe the

dermatologist’s role is even more important because not as many people

understand about skin cancer.

Cancer had changed their identities and sentenced them to perpetual patienthood, but this patienthood, in most cases, actually existed without illness. Once the melanoma had been removed, they were not technically ill at all. Charmaz (1994), reminds us that while “patienthood” has the potential to overshadow other statuses or identities that compromise one’s sense of self, those who are chronically ill may, “move in and out of the sick role” (p. 214). Melanoma patients may not be sick, per se, but arriving at a prudent compromise regarding the management of the risks of their condition, seems to involve facing its seriousness. Ironically, one source of frustration for the women I spoke with was that as they were coming to terms with the seriousness of melanoma, others often minimized their condition as, “just skin cancer.”

Cathy: My family was like, ‘It’s just skin cancer; you’ll get over it.’ Even my

husband at the time (She has since remarried) said, ‘Oh, what are you upset

about? What are you so worried about?’ So I had to find a lot of inner strength to

push on through. I think a lot of people find out when they have cancer that they

are really alone. You’ve got to find your own inner resources.

Sheila: I’ve always had a convertible. I wouldn’t say, the first two years after my

first melanoma, well, that the seriousness of it hit me. Then I got a second

149 melanoma. I’ve got a nasty scar from the first one because I played rugby and my stiches broke open. Then I got another melanoma, and I really researched it more and realized how awful it is. For my life now, it’s a constant, always putting on sunblock. Looking in the mirror is a reminder. The sun is not always my friend, and I just have to be careful. I really have my own nag in my head. I can silence that every once in a while. Then I can put the top down, put my hat on, and drive my convertible.

I remember one of my closest friends – his wife just got a mole removed that ended up being melanoma. They sent her to the cancer center, and they had to remove a lymph node and do a bunch of testing. They came back after going through all that and she said, ‘Sheila, I had no idea that melanoma was this serious. You need to take care of yourself.’ I said, ‘Yeah, I know. I have been trying to take care of myself.’ That’s what I had been trying to tell everybody!

Kristi: My husband and I did our research, and then we realized how serious it was, how deadly. I needed to do the research because most people don’t really know, they think skin cancer is nothing.

Diana: People think you have to live in a shoe box after you have melanoma. No, you just have to take the proper precautions – put on sunscreen; wear a hat and sunglasses and self-tanning lotion. I was fortunate because my scar is smaller than some, but that doesn’t mean that it was any less severe than a person’s with a bigger spot. It was working its way in, and it’s really not the size but the depth that matters. A lot of people don’t understand how serious melanoma is. They just hear melanoma and think, ‘Oh, skin, it’s just skin cancer so they can take that off.’

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Dr. Cronin: We hear, ‘Oh, that is just skin cancer’ in part because

dermatologists do such a good job. That’s not to pat ourselves on the back or

anything. But we are getting so good at removing them. You get numbed up,

you get it taken off, you get some stitches, it heals up in a week and you are on

your way. There is no fuss, so why sweat the small stuff? To us, to

dermatologists, it’s very big stuff. It might seem like small stuff to the public,

but it’s not. We are dealing with people who are dying from this disease on an

almost daily basis.

When a patient is diagnosed with melanoma, physicians will, after considering the depth and spread of the disease, make a determination regarding stage. The American

Cancer Society provides the following description of typical treatment protocols for each stage: for stage 0, because the lesion is not deeper than the epidermis, the relatively small area of the normal skin that surrounds the melanoma must be removed. With stage I, a wide excision of normal tissue is necessary and occasionally a lymph node biopsy is performed as well. A diagnosis of stage II melanoma usually means a wide excision of normal tissue, lymph node biopsy and possibly adjuvant therapy with interferon or another drug. A stage III designation means that melanoma is present in the lymph nodes so in addition to all the previously mentioned treatments, lymph node dissection, radiation and chemotherapy may be added to the treatment regime. Stage IV, metastatic melanoma, is difficult to treat, and patients diagnosed with stage IV melanoma have a poor prognosis (American Cancer Society, 2013).

For most of the women I spoke with, their diagnosis came as a surprise. Most had no symptoms other than a mark or a mole. Perhaps it was one mole among many, one small bump or spot that could be, and often was ignored. Their “symptoms” did not

151 initially cause a disruption; they were not ill, no fever, no pain, no anything that indicated the presence of a malignant cancer capable of taking their lives. Once the diagnosis was made however, life changed. After being diagnosed with one melanoma, it is estimated that the lifetime risk of another melanoma is 5 times greater than that for the general population. The incidence of a recurrence is greater for those who, like Cathy, Diana,

Sheila, Stephanie, and Kristi, were diagnosed between the ages of 15 and 39 (Virginia

Mason, n.d.).

One constant of their new reality was the need to have an ongoing relationship with a physician. Dr. Sam Fischer specializes in the treatment of melanomas on the head and neck, and he lets his patients know that, “you need total body surveillance forever”

(Duke Health, n.d.).

Dr. Sullivan: When a patient receives a diagnosis of melanoma, it always

involves uncertainty and anxiety. Most people still think of melanoma as a death

sentence. I have found that it is very helpful to sit down and discuss with my

patients their individual melanoma. I go over its stage, location, prognostic

indicators; just basically, we spend an hour letting the patient ask any question,

going over and through some of the emotional and informational work that comes

with this type of diagnosis. Even in the worst of cases, there is always hope. With

the number of new medications we have for treating even metastatic melanoma, it

is very different from where it used to be.

I also let the patient know that I understand their anxiety. I let them know

that they can reach me at any time, and that we not only will be doing routine

close follow-up examinations, but I will also be available for an emergency work-

in. If they have a question about a lesion on their body, I will see them. I instruct

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them not to feel dumb or like they are bothering me and that any time they have a

question, it is better to take a quick look and make sure everything is okay, and

the fact [that] they have a question is significant.

Dr. Brod: Right away, melanoma sounds dangerous, and it is. But there are some

very positive things here. It’s not that we are not concerned, but we try to give

them some perspective. The odds are, this melanoma won’t take your life. But the

big issue is that we know people who have a melanoma have a higher risk of

having more, so we are going to try and plan for that.

Both Cathy and Kristy were unhappy with their diagnosing physicians and both had to overcome obstacles when seeking suitable practitioners and treatments. Cathy vowed to write a book once she made it through her initial treatments. In addition to writing that book, in 2003 Cathy established the non-profit Melanoma International

Foundation (MIF). The stated purpose of the foundation is providing, “scientifically sound guidance and support” – exactly the kind of help that was not available to Cathy when she was diagnosed. At that time, Cathy was frustrated with the lack of information and disappointed at the lack of support she felt from her initial care providers. Later,

Cathy met a physician who, in addition to being her doctor, also became a mentor, co- author and friend.

Cathy: There were so many things I felt I needed to know, and I just wasn’t

finding the right answers. Dr. Guerry was my doctor, and he took me under his

wing. I went to every medical meeting he went to, and he taught me everything

there was to know; he helped me write the book in 1998, and revise it in 2005.

I think a sense of humor is important, and Dr. Guerry had the best sense of humor.

It was very stressful for the first few years, going back for checkups. I had to go

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through the clinics, so I would have a different doctor each time. One time a

doctor thought I had a swollen lymph node, which is the first sign that your

melanoma has spread and you are a goner. You go through all that, and Dr.

Guerry would always say something funny. After that other doctor left the room,

Dr. Guerry said it was nothing, and he added that the other doctor would be a

good doctor, ‘Maybe in another 20 years.’ That’s why we are still such good

friends now. He’s retired but he is just such a…

It’s a miserable life being an oncology doc for melanoma. That’s why so

few people want to go in to the field. You lose a lot of good people. It’s a tough

disease. I have personally lost people I was very close to. We just lost a lady in

Belgium. She started our sister group there. She was 42 and had two kids; it’s a

crime.

Cathy’s personal and professional experiences have taught her about the importance of the doctor-patient relationship and the MIF website includes advice about finding a doctor that inspires confidence and trust. All of the women I interviewed, including Cathy and Kristy, were very happy with their current dermatologists. A good relationship is important because, as Kristi learned when she had her first appointment with Dr. Sullivan after an extended period without check-ups, a melanoma diagnosis means a lifetime of skin checks and follow-ups. For melanoma patients, a routine skin exam may be the difference between health and recurrence. In spite of the initial anxiety before skin checks, the patents I spoke with eventually came to think of the checks as providing protection and security. In every case, these patients spoke of feeling comfortable and cared for by their physicians.

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Charon explains that in her role as a physician, she learns truths from the bodies of her patients. She writes of the self-telling body, as a witness to the lived experience, a partial testimony of the life of the patient (2009). The body carrying the scars and secrets of the patient is a story the physician may have to translate back for the patient (Charon,

2002). Ideally, such a physician can be attuned to the corresponding realities of body, self, and illness while remaining responsive to the individual patient. In the privileged position of knowledge and access, a caring physician may find it necessary to bring clarity and cohesion through a process of reconciling the patient with their own physical narrative. For patients who have been surprised by a diagnosis, sabotaged by their own bodies, that process of reconciliation must seem especially important.

After an initial diagnosis of melanoma, patients are required to have frequent screenings. Once skin cancer has been found, it is not uncommon for dermatologists to prophylactically remove moles or to biopsy suspicious lesions. The prevailing wisdom in health communication is that patients want to be heard by their physicians, but in this case, patients want to be heard and seen. Realizing what is at stake, it is not surprising that many of the women I spoke with mentioned physician kindness and thoroughness during skin exams as key to their sense of security. When it comes to skin checks for melanoma patients, the idea of a close reading as an embodied performance of physician capabilities involving, “gestures of hands and postures, glances and gazes” is both literally and figuratively true (Langellier, 2009 p. 153).

I asked Dr. Brod about the unique treatment aspects for this disease, where a patient needs to trust someone to look at them in order to keep them safe.

Dr. Brod: It’s very hands-on too. There is not a technology; you can’t walk into a

machine and be scanned and have it point out the thing. Whereas with other

155 malignancies, you have PET CTs, MRIs; you walk into the box and that tells them. But with dermatology, it’s hands-on and that changes the relationship.

Trust makes a difference. Many of the things we do in dermatology, for those who have completed a residency in dermatology, they are not too difficult after years.

It is the communication that’s key. The relationship also impacts compliance, even in terms of keeping a follow-up appointment. I know one dermatologist who schedules a third more patients than he sees. He says it’s like the airlines; there is a certain no-show rate. Well, for me, one person a day might not show up because they’re sick, but people show up, because I think they get the sense they are not just a number. You have imparted to them that this is something…you need to be part of an on-going team. It’s not that you are just there for your check-up – you are part of the process.

I tell patients, ‘The goal here is not to make you a professional patient, but to make you a person who functions extremely well.’ My goal is to work through these issues so this doesn’t dominate your life. We have a plan. I think it helps to have structure, and to have them involved in the process. I say, ‘There are a lot of diseases out there that we have very little control over, but this one we do. We have complete control. We know the cause.’

Dr. Sullivan: I think that trust or release comes with time. The diagnosis of any disease, particularly one such as melanoma, is a trauma, and patients react and adjust over time. It is my role as their physician to help facilitate that adjustment, be available to them, and also be available to them with the latest up-to-date medical care. I think once a patient knows that you are there and that you will take care of them, whether by facilitating emotionally or medically, there is a

156 sense of relief, in that they don’t have to carry the burden all by themselves, and they know if they have an anxiety or a question, it can be answered in a short period of time.

Sheila: I am constantly coming in to the doctor. I have to continue; I can’t miss my appointment here. You have to schedule six months or a year in advance. A year in advance! I just have to put that in my calendar. Just another reminder to keep me on track. I must say it’s an inconvenience; there are so many people here and there is always a wait. But he is the most thorough guy. He has been so great for me, but it is a pain. Sometimes I come in here, and I feel really upset afterwards, because he will remove some things. I think I’m just like a quilt with all these scars from removals ‘just-in-case,’ because I have lots of those. They didn’t end up being anything, but that two-week period when I am waiting… ‘Oh my gosh, do I have melanoma again? Is it going to be a stage?’ That is awful. I hate the two-week period when I am waiting to find out.

My strategy is to complain (laughs), no really I’m just like, ‘Oh my gosh, oh my gosh, oh my gosh...’ I wait one week and a day from my appointment – if I don’t get a call from them, I will call, and if they are not in then, I know they’re going to be in within the next couple of days. My appointment is on Wednesday, and I will wait to call until the next Thursday.

I was thinking the other day [about] right now where I am at with it – melanoma and the whole skin cancer thing. I know that the next ten years are pretty serious. I know that if something is going to happen to me with melanoma, it is most likely going to happen in the next ten years. I know that if I can make it through my 30’s without having any melanoma, and I keep doing my checks, I’m not in the clear,

157 but… So in my head, I know that’s how I’m going to get through it every day, putting on that sunblock, every morning putting sunblock on my kids. That’s how it has affected me: I am much more cautious. I have the next ten years, and I am crossing my fingers. I know I have Dr. Brod on one shoulder and my mom on the other one, so between them and myself, I think I will be fine, hopefully, but you never know. You never know.

Kristi: My sister recently told me that she knew every time I would go in for my check-ups, like a week before, it was a week of anxiety – just worrying that they were going to find something, worried there was going to be another mole that was melanoma. Just a week of sheer anxiety that they were going to find something, and I was going to have to go through it all again. Every three months,

I had another appointment. I was a nervous wreck. It was a constant worry. I was surprised, because this was the first time my sister and I had really talked about it.

We are very close, but I didn’t talk much to the family, because I didn’t want them worrying about me.

First I saw the doctor every three months, then every six months. Once I got to 5 years, I felt better. Then I moved and started seeing Dr. Sullivan she sometimes takes moles off just to make sure they don’t turn. I feel better. I have sent my sister to her, and my daughter. I love her; she’s great. I don’t want to go through what I did before, with a dermatologist I didn’t like and didn’t trust. I want someone who knows what they are doing. At first, it seemed like every time

I went in to see her, she was taking something off. But for the last three visits or so, I haven’t had to have anything taken off, so that’s good. That’s really good.

Yeah, it was probably five years before I felt normal again.

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Stephanie: I was always worried it would come back. Anytime I went to the doctor it was like, ‘Oh my goodness; is it coming back?’ I hated having to go all the time. Most of the time I went to the doctor, it was precancerous. The nurse counted one time, and I have had over 80 places taken off. And probably out of those 80, 75 have come back as precancerous. So every time I went in I wondered, ‘Which is it going to be, pre-cancer or cancer?’

When I was younger, I was complaining to my parents, telling them, ‘I’m going to quit going to the doctor. I’m tired of going to the doctor.’ For years, I was just mad – aggravated, and of course worried and stressed, all at the same time. Eventually, I got over it. It helps that I don’t have to see as many doctors or go as often. And it helps to have a great doctor. And it helps to have the nurses who are there. They know my name, and they know my family. It helps that they are so nice about everything, so helpful and positive.

I transferred to Dr. Sullivan when my dermatologist moved to California. I have been seeing her since I was fairly young. I’ve been in so often I know everyone by name. Dr. Sullivan sees my whole family. We love Dr. Sullivan. It is definitely a relief for my mom when I go to see Dr. Sullivan, because she knows that Dr.

Sullivan isn’t going to take any chances. And I know that too. If I have a feeling that something is wrong, Dr. Sullivan is there. If I think she needs to take something off, then she takes it off. She is extra careful, and that always helps.

When you’re mad at everything else and you still have to go to the doctor, it helps that you’re not a number, not just some person walking in the door that they are paid to see. She takes her time. It helps to have a great doctor, and she’s definitely a great doctor.

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I go in and see the same people, and know they are there to check on [me], and hopefully, nothing gets past them. You trust that when they say, ‘Everything’s okay,’ that everything is really okay. For mom and me, the greatest thing about

Dr. Sullivan is that she is not going to let anything get past her. She checks me from head to toe every time I walk in there. She remembers places I don’t even remember. She won’t let me –even if I move out of state, she wouldn’t let me see another doctor. I’d have to drive back here to see her (laughs). She is just the best.

It’s a relief for my mom too. We both know that when I go to see Dr. Sullivan, she’s not going to miss a thing.

JoAnn: The first time I saw Dr. Brod he found three melanomas. Because of an issue with my insurance, I had to go back to my other dermatologist. I didn’t like him as much, so I thought, ‘I don’t care; I’m going back to Dr. Brod.’ Dr. Brod is very thorough, and the other doctor wasn’t. The other doctor more or less said,

‘When you come in, tell me which spot you are concerned with.’ I thought, ‘I’ve got a history of melanoma!’ I’ve had four melanomas, and that just didn’t sit well with me, so I came back to Dr. Brod

Diana: At first, I was uncomfortable, but I am over that now. If I wasn’t coming in getting my skin checks, it would be different. But I’m confident that when I come in here, if they saw anything… My goal is for early detection. When you’re young, you have hopes and dreams and they can all be shattered by a lack of knowledge or a lack of caring. I wouldn’t have had my two precious little girls if I hadn’t come in here.

June: The first couple of years after my diagnosis, I would see Dr. Brod every three months. I’d be a nervous wreck, never knowing what was going to happen.

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Now, I feel very safe with him. I have scars completely, just all over my body, scars of skin cancer. I also have hundreds and hundreds of little warts on my feet and ankles that come out when I am in the sun. Those are from the tanning beds.

Liz: I feel like it was a blessing for me to come to work here; if I hadn’t, I probably wouldn’t have gotten a skin exam. I would not have known I had melanoma, and then who knows what would have happened? It scared my daughters. My daughter came in here and got a skin exam right away. She is 26, and fair like I am. My younger one is 23, and she has a complexion more like my husband. She has an appointment to come in and get checked as well.

I’m just glad it happened the way it did. Somebody was looking out for me. They are great doctors here. I love them, and think they are awesome. I feel like we educate a lot here. A lot of patients come in and they have a sunburn, and they are going to get in trouble, but it’s for their own good. Just think about it – wear your sunscreen. I say, ‘Just keep up your regular skin checks and follow the doctor’s orders and use your sunscreen.’ Yeah, I’m very glad I came to work here.

It’s a wonderful office. Dr. Brod is amazing, amazing. He’s so unique. I love him.

He is so good at what he does and so thorough. His patients are everything to him, they really are and it shows.

Dr. Brod: Patients say, ‘You’re doing a good job.’ And I tell patients, ‘I’m not doing anything. I didn’t bring you in here today; you brought yourself back.

You’re doing this.’ I tell them, ‘We are in this together. Don’t say to me I’m doing good; we are doing this together. I can’t treat you without your participation, your understanding, and your willingness to work with me.’ I tell them that all the time.

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Dr. Sullivan: I think being a patient has been a big gift to me in allowing me to

practice medicine more effectively.

It’s all About the Sunscreen

“Now, I am the sunscreen crazy woman. Lather up, you have to, you really have

to.” (Liz)

Dr. Sullivan: I try to let them know that they can still go out in the sun. They

need to wear sun screen, not get intentionally sunburned, and wear photo-

protective clothing. If they are to get sun and go on vacation, they just need to be

careful about it. No one has to hide out; we just don’t tan for effect. I use myself

as an example of still going on cruises even though I am at high risk for skin

cancer personally, being a transplant patient. I tell them that I manage to do all the

fun things and not get sunburned. I think that, once they understand that you can

still actually live a life, it is easier to transition to a different type of pigmentary

reality.

A lot of people don’t care anymore, and would rather be safe than tan. If

one of the patients still wants a tan look, then I usually recommend the spray-on

tan, urging them still to use sunscreen on top of it.

Dr. Burkhart: A lot of them get overly cautious – well, maybe not overly

cautious, but it really takes over a lot of their lives. They cover up completely any

time they go outside in the sun; they worry about every small mole. There is

usually a period of about a year, or maybe longer for some, when they are very,

very cautious about every brown spot on their body and very, very cautious about

avoiding all types of ultraviolet radiation, such that it really affects their quality of

162 life in every way. I think most of them overemphasize the “all radiation.” In my opinion, indoor tanning beds are much more important than all the rest.

Some women told me that given their “expertise” after having melanoma, friends and acquaintances often ask them to render an opinion on their moles and suspicious spots. Their advice is “get to the dermatologist!” All the women I spoke with have become proselytizers for sunscreen and promoters of sun safety.

Taking precautions in the sun was often the first thing to come up in our conversations about their changed behavior post-diagnosis.

Sheila: My brother’s girlfriend has these moles and she has never been to a dermatologist. I just know she needs to go get them checked out. One of my coworkers, I was rock climbing with him and he said, ‘You had a mole removed, didn’t you?’ And he showed me his mole. And I said, ‘Yeah, you might want to get that checked, it has irregular borders.’ And I asked him, ‘Has it grown?’ and he said, ‘Yes, it has,” and I said, ‘Yeah, you need to get it checked.’ He went in and they removed it. He showed me the hole in his leg today. I have a hole in my leg from one they removed that didn’t turn out to be anything. So we both have holes in our legs.

I have people come up and say, ‘what do you think of this?’ I say, ‘you should get it checked, I’m not a dermatologist!’

Diana: If it wasn’t for my sister working in a dermatology clinic, I might be dead now. I almost get angry when someone is like 40 and they have never had a skin check. I’m like, ‘You have never had a skin check? Are you kidding me? What is wrong with you?’ And they are like, ‘Well, have you had one?’ And I say, ‘Yeah,

163 ever since I was 21 and had melanoma.’ Then I tell them the story, and they say,

‘Yeah, maybe I should go sometime.’

I tell everyone to go in and get checked. It’s worth it whether they have insurance or not. My insurance doesn’t cover it, but I make sure I pay out-of- pocket every six months. Then there are people who know I have had melanoma, and so they say to me, ‘Does this look like one?’ and I say, ‘I don’t know; go have a skin check!’

Cathy: You know, we have a lot of Amish here around Lancaster. Once Dr. Brod said something that I love, and I repeat it to people all the time. He asked, ‘Do you ever see any Amish in my waiting room? No, because they are covered. Long sleeves, long dresses, and hats – they don’t expose themselves to the sun.’

Liz: I went on vacation with my friend before I was diagnosed. She had already been diagnosed with melanoma and in Jamaica she had on her hat, she had on her shirt, she had on her number 50 broad spectrum sunscreen. Now, I am the sunscreen crazy woman. Lather up; you have to, you really have to. I used to go out in the afternoon and work in my flower beds. Now, I wait until the sun goes down. I had to really change my way of thought because I went out in the sun all the time. It feels good; it’s warm; it feels nice. Now I encourage the self-tanning lotion; that’s my new best friend. It moisturizes as well, so if you need a little bit of color, do that.

Kristi: I have never been in another tanning bed and I never will for the rest of my life. I have sunscreen on every day, first thing in the morning. If we go to the beach, we have a big container of sunscreen. I am always under an umbrella; I

164 wear a hat; I don’t sit in the sun. I do everything I can to keep my kids covered in sunscreen.

Diana: I make sure to put on sunscreen, hats, things I didn’t really wear to the beach before. I hang out under the umbrella more often. It’s me and my mom – everyone else is coating themselves with baby oil and laying out. It just can’t be me. It shouldn’t be anyone.

Stephanie: After the cancer, you just grew up. You had to tough it out and do all the things you had to do. And all your friends are still tanning, and lying in the sun, and going to the beach. And you’re just, ‘I can’t do all that kind of stuff.’

JoAnn: It was hard not to get a tan. Every year I wanted my legs tan. And I love to swim, but I couldn’t tell you the last time I went swimming. Well, maybe last year, we went to the beach. But even going to the beach, I want to go out in the morning or in the evening, and everyone else wants to go out during the day. So I am trying to stay away from the beach, because I don’t want to put myself in jeopardy because I love to swim and when I am out at the ocean I want to be swimming all the time, not putting lotion on. You know what I mean?

I wear sunscreen all the time, as soon as I get out of the shower – everything that I know is going to be exposed. Like now, in summer, it’s my feet, my arms my chest, and my face. At work, I walk outside to the other building four times a day and that’s just a little bit of sun, but it is still sun. So I put sunscreen lotion on every day.

Sheila: In the winter, I have sunblock on my face. This is an organ; you have to take care of it. I have become such a nag to my friends to always get their sunblock on. I work with kids who are emotionally disturbed. They are working

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on getting their basic needs met, so skin cancer and suntan lotion comes last on

their list. Those days when I am at school, I can help when we go outside or talk

about being careful in the sun. I’ve gotten some of my coworkers to do this

sunblock thing, if we have a field trip and we are going to be outside all day and

parents don’t send sunblock with their kids. It’s been an educational thing that I

have been able to pass on to the kids.

Influencing Others, or Not

“My husband absolutely does not wear sunscreen.” (Kristi)

Interestingly, although the married women I spoke with all talked about the concern and support they received from their husbands, each also expressed dismay that their husbands were lax about their own sunscreen use.

Dr. Brod: I try to acknowledge that this is a valid concern. The fatality rate for

melanoma is higher for men. The reason why is they don’t do that “checking

stuff” or wear sunscreen. They just go outside without a shirt on. I tell them [that]

more men die of this than women because men aren’t very good at medical stuff.

They don’t like to get checked, don’t like to listen, and they are not indoctrinated

in that culture the way women are.

They don’t like the smell, don’t wear lotion, don’t like stuff on their skin. I

tell them to pick their battles. Pick a battle you can win. You may not get your

husband to wear lotion, but if he wears a shirt when he is outside gardening, that’s

an accomplishment. Or get him a cool hat that he likes. Sunscreen is good but

sun-protective clothing and smart behavior is better. Don’t have him mow the

lawn in the middle of the day; have him go out in the morning or the evening.

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You might eventually get him to wear sunscreen. Give him a spray, a stick he can

roll on. He can keep it in the garage next to the oilcan.

Husbands were not the only people who seemed to discount the advice, or the example of experience. Every woman I spoke with had friends, co-workers, or family members, who, despite hearing the story of tanning and melanoma, remained unwilling to adopt the skin safety measures that, for these survivors, had taken on life-saving importance. Some of the rationales used by family and friends to dismiss the stated concerns, were the very same rationales these woman had used prior to their diagnosis, and, for some, after their diagnosis as well.

Vicki: How did your husband react? Does your husband use sunscreen?

JoAnn: My husband was upset. Dr. Brod was so nice. He called us the night of

my surgery to make sure I got home okay. He was so nice. Use sunscreen? Oh no.

He doesn’t have skin like me. He doesn’t have moles and freckles. Not that that

should matter; it shouldn’t. But he doesn’t have moles and freckles like me, and I

think that makes a huge difference.

Liz: My husband was shocked. I know it did scare him a bit. Although I have to

tell you, my husband loves to lie in the sun. He does not love sunscreen, although

he has worn it more this summer than he used to. But not a high enough number,

and he has not had a skin exam yet. Of course I am on that 24/7. He has an olive

complexion, and I know fair-skinned people have more of an issue. But he’s not

immune even if he thinks he is.

Kristi: I know my husband was worried, worried that I was going to be okay. My

husband absolutely does not wear sunscreen. It’s the craziest thing. I try my best

to tell him, ‘You need sunscreen, you need sunscreen, you need sunscreen…’ I

167 don’t know what that’s all about. His complexion is different than mine. I am on the pale side. He never wears it, he says, ‘Oh, I forgot.’ If we go to the beach, like we are at the beach for a week, he might wear it. But if he goes to work out in the yard, he won’t put it on. Working outside without his shirt on, he doesn’t wear it.

I don’t get it. It’s the same sun. I don’t know; I have really tried. I just don’t know.

I have a sister – she doesn’t go to the tanning beds, but she will lie out in the sun without sunscreen. Then she gets burned and gets mad at herself. And I say, ‘Okay, stop doing damage to your body and stop coming to me and complaining when you know better.’ My sister-in-law still goes to tanning beds.

She says, ‘I know, I know, I probably shouldn’t go…’ But then she will go anyway. She goes in the spring, when everyone goes, because they don’t want to be pasty-white in the summer. All I can do is tell her she shouldn’t go.

One of my closest friends is the mother of my daughter’s little friend who is 13, and she goes. My daughter is like, ‘Why, why, why, are you going to the tanning bed? Don’t you know what happened to my mom?’ But they say, ‘I just want a tan, ‘I don’t want to be white.’ I’m sure they are thinking it won’t happen to them.

June: I have a fair-skinned son who is a roofer and you can’t tell him how bad it is.

JoAnn: My oldest boy is 29, and he is in the Marines. I tell him all the time, but he doesn’t listen.

Liz: My daughters are 26 and 23, and it’s a popular age to tan. My daughter’s friends come over and see my scars and they ask me what happened. When I tell

168 them it was melanoma, from the sun and the same kind of tanning beds they use, they are shocked. Some of them tell me they still go tanning and I tell them not to do it, that it isn’t worth it. Some of them look at me and say, ‘Oh, we’ll be fine.’

They think they are invincible. But a few will think about it and say, ‘I probably shouldn’t do that anymore.’ So I hope I sway them a little. It might go in one ear and out the other. Maybe a couple heard me.

Sheila: I have a friend who goes tanning now, and I actually almost feel betrayed by her, because I think, ‘How can you do this after knowing what I’ve been through? You don’t do that to your skin!’ She has a darker complexion and she doesn’t have any moles, so she thinks she doesn’t have to worry. I tell her there is no reason for her to put her body in an oven and burn her skin. She is more worried about her looks than her health. She looks at me like I have “a condition” and says, ‘I don’t have this condition, so I can go tanning.’ I have other friends who tan once in a while, like before a wedding. They don’t think it is any big deal. They think they have to be tan if they are going to be a bridesmaid. They want a tan so they look good for pictures.

Diana: When I told my story in the office, to just a couple of people who asked, one lady said, ‘That is kind of scary, but I should be okay because I only go a few times a year.’ Then I told her it only takes 10 times to change the DNA of a mole, and she said, ‘Oh, is that right?’ Now I think she will probably think twice the next time.

Everyone I worked with at the tanning salon still pretty much works there, and they have new people. They like to bring in the high school kids to work there. It’s usually the ones who are all about tanning; they get the jobs there. They

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come in and they are all tan and, ‘Sure, you can work here.’ Nobody has really

joined my side. It’s the more boring side of life when you know you can’t do what

you want to do.

Stephanie: My mother tells her story to anybody and everybody. She doesn’t

mind it. She is going to let everybody know her opinion on tanning beds, and it’s

not a good one!

Stephanie’s Mother: I have some friends who let their daughters go tanning. One

lets her daughter tan even though she has had cancer. I tell her all the time; her

daughter has blond hair and blue eyes, and I tell her she is crazy. She tells me she

tans slowly and doesn’t go that much. I tell her she shouldn’t go at all. She has

had melanoma herself, and she still lets her daughter go. She says, ‘They monitor

it.’ What can you do? I think they’re crazy. Vanity is more important than living.

An Australian study of sun safety found group norms the most important predictor of behavior (White et al., 2008). Peers are an important normative influence because a comparison between an individual and others who are perceived to be engaging in a behavior may provide additional motivation to engage in the behavior when the outcome for those others is perceived as positive (Rimel & Real, 2003). The perceived positive outcome from tanning might include approval – a study examining the social predictors of sunscreen use found that participants rated their friends and romantic partners more supportive of a tanned appearance than family members (Mosher & Danoff-Burg, 2005).

It might include fitting in – young teen participants in a tanning study told researchers that in addition to having the right clothes and hair, having skin tanned to the right color

(like “iced tea”) allowed them to achieve positive recognition and popularity (Shoveller,

Lovato, Young & Moffat, 2003, p. 308). In high school, the most popular groups often

170 place a great deal of importance on appearance. Members of the group are likely to have similar beliefs about behaviors related to appearance, making it difficult for any one individual member to make behavioral changes contrary to the accepted group norm

(Stapleton, Turrisi & Hillhouse, 2008).

Dr. Burkhart: We have had young, attractive, well-spoken dermatologists talk to

teen-aged girls. That’s been huge. That’s what you need: young, attractive, female

dermatologists teaching them about the dangers of tanning beds. And separating

sunlight from tanning beds would be a huge help. It’s my number two talking

point. Tanning beds are dangerous, and not the same as sunlight.

Dr. Brod: I see some kids. I always counsel them about sunscreen. I really see

that as part of my role. I always interject it no matter what. I see a lot of kids with

dermatitis, and I say, ‘Let’s talk about sunscreens and sun protection. That will

mesh with your eczema because it’s really important, or your acne.’ Some of the

drugs cause sun sensitivity and then it’s even more important. Maybe a kid comes

in with the wart, and I say, ‘Oh, you play soccer? I hope you’re using your

sunscreen, because you get a lot of sun doing that.’

I mean, I tell them stories too. I say, ‘I work with the Orioles, these are

like major-league baseball players.’ I even show them a picture of the Orioles

sunscreen tray. ‘These guys are, like, pretty elite athletes… You’re not above that,

I don’t think.’ And they like that; they say, ‘Oh yeah, that’s cool.’ And they use it.

I feel that it’s my obligation to at least try to get kids. I know that compliance

rates from one visit aren’t great, but if it goes up 5% or 10%, that’s better than

nothing.

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I tell them, ‘Tanning salons, I hope you never use that right?’ I try to get

them to talk about that a little bit. I mean, it’s quick. It doesn’t have to be a 30-

minute conversation. You can do it in a minute. After that kids are on to the next

thing; they’re on Facebook or texting, so a quick message is best. It would be fun

to do something someday with social media. But I’ve lived in the face-to-face

world so far.

Scars Aren’t the Only Evidence of Change

“I teach kindergarten and I tell them a shark bit me!” (Kristi)

Dr. Brod: I’ve had some patients who are very worried about having a procedure

done because of the scar. They are focusing on different things than we are. They

are focusing on the cosmetic aspect, and we are thinking, ‘No, this is skin cancer.’

It’s an area we have to bridge. You have to explain; you can give them other

options. They can go to a plastic surgeon. We have Mohs (Author’s note: Mohs is

a less invasive surgery technique), so that can help.

You can explain that a consequence of not having it off is that it’s going to

get bigger and result in a bigger scar. The melanoma, that’s life-threatening. You

don’t belittle them; you don’t say, ‘Oh, you are stupid. You are vain.’ I have

patients who say, ‘Oh, I saw this doctor, and now I have a scar on my nose,’ and I

say, ‘Yeah, but you don’t have skin cancer anymore. You still have a nose, and I

know people who have a prosthetic nose.’ If you make them feel fortunate, if you

reframe it, that helps. Some people just aren’t going to get it, or they are not going

to get it at that time. I have some patients who initially focused on the scars, and

over time they don’t so much. For one thing, they see that eventually the scars do

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fade, so that can improve over time. You just have to make sure to help the patient

do the right thing medically.

It is somewhat ironic that disfiguring scars were the result of a quest for an improved, sexy appearance. Many of the women I interviewed spoke about the visible evidence of their surgeries. Charmaz (1995), explains that chronic illness, and I would add the chronic threat of recurrence, shakes up the notions of one’s body. Often it no longer functions, looks, or is valued the same as the body before illness. She writes of people adapting to such changes by finding a way to accommodate the physical limitations that were caused by the illness (Charmaz, 1995). For the women I spoke with, the accommodations that were required of them involved the physical action of staying out of the sun and using sunscreen, the emotional work of letting go of their previous desire to look tan, and a resolve to accept their scars as a part of themselves. Rather than hide them or be embarrassed, these scars became more supporting evidence in their argument to others against tanning. For some, getting to this place of accommodation took considerable ongoing effort. Over time, these shifts in attitude, behavior, and perspective were important signifiers of changed lives and hard won maturity.

Diana: I’m lucky that my scar isn’t worse. Some people, when they see it, still

say, ‘Oh my goodness!’ But I have seen some people, I mean their whole arm

is… I mean, I don’t know how they do it, but the first whole layer of skin had to

be taken off. So I feel fortunate that mine is as small as it is, because I only

needed two surgeries.

This has changed my thinking about a lot of things, like instant

gratification. Now I have started thinking about what is healthy and what’s not –

even thinking about how often I get highlights in my hair. Instead of the instant

173 gratification of going out to get my hair done, or going tanning and telling myself nothing is going to get hurt, now I tell myself, ‘What are you thinking?’ All this artificial stuff…sure, for an instant it’s great, but melanoma is not pretty.

Diana: Having scars, I get asked all the time what they are from. I have this weird scar, and I get asked what it is. I tell them I had melanoma and people say,

‘You’re only 29 and you had melanoma?’ Then I get on my soapbox and tell people how serious it is. It is something I hear all the time; people think you don’t get melanoma when you are young. People think it’s something you have to deal with at 60, not at 20.

Stephanie: When I would go in, I had places taken off my back that were as big as your pinky. It was several places at a time. I have had as many as seven or eight things taken off at a time, and stiches and stuff. I would have scars. Really, it bothered me until I was about 25. Any time you wear short sleeves or a bathing suit or anything like that you have these scars all over you. You know it’s there, and everybody else can see it too.

I didn’t want any moles on me at all, but I didn’t like all the scars. Now I have accepted it as part of my life. You get older and realize, ‘This is the way it is, and I just have to live with it.’ I’ve had people ask me about my scars. I’ll have to go into the whole story about everything. I have some co-workers who weren’t aware when I first started working there 7 years ago. Once they saw what I went through, and once they knew it came from the tanning bed, it kinda hit them in the face. They see me come back from the doctor, they see the stiches and the scars, and now they are more aware.

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Kristi: I wasn’t prepared for what my leg was going to look like. I have a giant hole in my leg. I teach kindergarten, and I tell them a shark bit me! When my mom saw me after surgery, she said she wasn’t expecting such a big hole in my leg and I said, ‘Yeah, I know.’ Now, I show people the scar, but for a long time I was very embarrassed by it. Whenever I wore shorts or something, I would cover it up with an ace bandage. I was very conscience of it. But I didn’t want it to embarrass me, and I finally got over it. I thought, ‘It’s vain and this is just me, so I have to get over it.’ And you know, it’s just a scar; it’s my life; it is me now. And if people ask, I will tell them.

People do ask; they say, ‘What happened to your leg?’ And I tell them I had skin cancer, and some say, ‘Did you get that from tanning beds?’ and I say, ‘I absolutely think I did.’ There was a woman – we were shopping, and I had my kids with me. I had on shorts, and she came up to me in the store and she looked at my leg and said, ‘Did you have melanoma?’ I was actually really surprised, because I have never had anyone know what the scar was from. I said, ‘Yeah, how did you know that?’ And she pulled up her pant leg and showed me a scar. It wasn’t as bad as mine, but it was almost as bad. She said, ‘I did too.’ I asked her how long ago, and she said she had had hers 5 years ago and asked when I had mine. Then she said, ‘I can’t believe you just walk around and you aren’t embarrassed and you can just wear these shorts and be comfortable.’ I told her it had taken me a long time; it took a very long time for me to be comfortable enough to wear these shorts. I told her that for 10 years I covered up, and then I just had to get over it.

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We were getting ready to leave and I said, ‘I am still alive, and I just have to deal

with it. People look and people say things and I just have to ignore it and not

worry about it.’ She said, ‘I want to get there someday. I want to be like you.’ She

said, ‘I’m really proud of you for doing that; you’ve given me hope that maybe

someday I can do that.’ That conversation made me feel really good.

When (and How) Do You Know What You Know, and Does it Matter?

“You have to learn your lessons the hard way.” (Stephanie)

Occasionally, the learning process that results from the experience of direct observation of others’ negative consequences will provide motivation to avoid a particular behavior. While not specifically about indoor tanning, during focus group discussions about sun protection, adolescents who had personal experience with skin cancer patients, or who had experienced severe sunburn, were motivated to use sun protection (Paul, Tzelpis, Parfitt & Girgis, 2008). But this is not always the case, and it would be a mistake to assume that an adolescent who has directly witnessed the negative consequences of tanning, such as a family member with skin cancer, would be less likely to tan. There is considerable evidence that the perception of personal susceptibility and future negative consequences do not mitigate the desire for more tangible short-term benefits (Greene & Brinn, 2003). Unfortunately, a concern about potentially long-term health consequences appears to be the exception rather than the rule.

In 2005, the American Academy of Dermatology released a survey of 12-17 year- olds. 79% of those surveyed knew suntans could be dangerous and one third knew someone who had skin cancer. Remarkably, 50% still indicated that people with tans looked healthier. Apparently, the understanding that a tan can be unhealthy has done little

176 to prevent the perception that tans contribute to an appearance of health (Hawaleshka &

Righton, 2005).

A Swedish study of teen girls described female participants as aware of tanning- related risks. However, despite this awareness and despite a general female tendency for risk avoidance, researchers found that cosmetic and social motives played a larger part than health concerns in their decisions to tan (Sjoberg, Holm, Ullen & Brandberg, 2004).

This finding was echoed by Boston University researchers who report that girls are more likely than boys to prefer using a tanning booth and to feel that it is worth burning in order to get a tan (Creighton, 2002).

Dr. Cronin: Of course, young people believe they are immortal, and that they are

unbreakable. Nothing is going to go wrong. Because of this, it hits them like a ton

of bricks, a young person with a cancer diagnosis.

Dr. Burkhart: I heard that teenagers think there is more of a chance they are

going to die anyway, so they view risk differently. So I emphasize the cosmetic

with my teenaged patients. I point out the brown spots and wrinkles that have

developed at a young age. I feel it has more impact on them, but I don’t know.

Dr. Brod: I think that the appearance argument is not very persuasive with young

people, because they think they look better tanned. It’s not until the women – and

sometimes the men – see the damage that it becomes a powerful argument. Then

it’s too late, but it does motivate them that they don’t want any more damage.

I heard from every women with visible scars that they used the comments or questions they received about their scars as an opportunity to share their stories. Without exception, every person I spoke with had shared her story with someone as a cautionary tale about tanning. For some, the audience for these stories was small, consisting

177 primarily of family or close friends. Others embraced any opportunity that came their way to share their story of tanning and cancer. Despite the fact that most expected their warnings to fall on deaf ears, the possibility that even one person might think twice before tanning provided enough reason to keep trying. I asked them to consider if, when they were younger, anything could have been said or done that might have changed their intention to tan. The answers I heard were marked by ambivalence, “Yes, no…maybe.”

Most believed that education was key – if the information had been available, things might have been different. But when it was pointed out that most indications are that currently, people know more about the dangers of indoor tanning and they are still tanning, no one was really surprised. It turns out that when folks grapple with the question, “If I had known then what I know now about tanning, would I have done it?”

The answer is often, yes.

Experience has taught each of these women that the task of convincing someone to change their tanning behavior is difficult. Consequently, they have come to expect that in most cases, sharing the stories of their cancer and encouraging people to give up tanning will result in a disappointing or lackluster response from hearers. And even though a positive reaction is uncommon enough to be a pleasant surprise, no one seems inclined to give up. Their resolve for the task was evident. Possessing the wherewithal to potentially dissuade others from tanning is seen as something positive coming out of the otherwise negative experience of their diagnosis. For June, talking to others is also a way to assuage the guilt she feels about working in the salon.

Kristi: Was there anything that could have changed my mind? I don’t know;

probably not. It’s just like my friends now. Somebody may have known about the

danger; I don’t know if I would have stopped. Someone might have said, ‘You

178 could get melanoma.’ I mean, I was young – a teenager. I don’t know, maybe in my middle-twenties I may have stopped, but teens and early twenties, probably not. I like being tanned. I was prettier tanned. I liked the way I looked when I was tanned, so I don’t think I would have stopped. Unless it would have been someone close to me who had an experience with melanoma or skin cancer – then I might have done something.

My daughter tries to talk her friends out of tanning, but she has learned the same thing I have learned – that until you have lived it, until you have experienced it, talking doesn’t do any good. It might not even help, but last year when it was National Melanoma Awareness Month, I went to the school and showed them my leg and said, ‘It’s National Melanoma Awareness Month, so be aware and stay away from tanning beds and see a doctor.’ I had a lot of people call me up after that and say, ‘Thanks for reminding me.’ I had a lot of positive comments.

Stephanie: I don’t think anything would have changed my mind. Once I get something in my head, no one can tell me anything different. My mom tried to tell me not to go, but I was bound and determined to go and try it out. I was just dumb; why didn’t I listen? You have to learn your lessons the hard way. I knew long exposure was bad because it would make your skin look leathery when you were older. I didn’t think anything as serious as cancer would come from it. Now

I know that any exposure to tanning is harmful. It’s a hard lesson learned.

I just wanted to not be white anymore; I wanted to be a nice tan color. I wanted to be tan like everyone else. Now, I just want to be myself. I’m as white as it gets now. I’ve learned my lessons. I’ll be pasty white the rest of my life. It’s

179 made me warn others about tanning beds. I had to grow up early, but it just made me not take things for granted. God helped my family and [me] through it all!

JoAnn: I tell everybody, because you know what? Hey, you can figure it out for yourself. Do you know what I mean? This is my story; this is what happened to me. When I was younger, if I had seen the scars on my legs that might have warned me. It was all about the looks; tanning made you look slimmer.

Young people see Hollywood stars and think, ‘Wow, look how dark they are,’ and they think it’s cool to get tan. Nicole Kidman would be a great spokesperson. She has beautiful skin. I wish I would’ve been strong like her when

I was growing up, to be that pale and to love it. I would like it if everybody thought being pale was good, and I wouldn’t feel awkward walking on the beach.

Sheila: When I was younger, there wasn’t education about melanoma. The only thing I heard was for the first time don’t stay too long in the tanning bed. What might have changed my mind about tanning? Well, I don’t know…they have this thing like a black light and under the light you can see the sun damage. If I had seen myself like that, and been told about what tanning beds could do to you, and how it makes you look, I might have had some hesitancy about it. Back when I was 16, I feel like there wasn’t enough information, or at least not enough publicized information about tanning beds. Information about how you would look might be more important to a teenager. Skin cancer is for when you’re older.

When I talk to the people at school and they are more careful, that helps me feel better about putting an education out there for them.

I feel better about my situation; at least I’m carrying it over a little bit.

People don’t realize how serious it is until it affects someone they know. I can

180 help with the awareness. I don’t know if education is out there; maybe just having more education in general. But you can have all the education, all the brochures, and everything you want, but what it comes down to is, are you going to read it?

Are you actually going to follow through?

Diana: It would be nice to be some sort of a spokesperson for melanoma. I’ve always pictured myself doing that. I would love to talk to people, I really would.

If I had heard an inspirational story in school, and been more educated, I probably would have thought twice. The fewer people that go tanning, the less pressure on everyone, because when you are a girl in high school, it’s all about the competition. Maybe not competition for everyone, but I felt that way personally around my friends. It was acceptable if you were tan.

People who work in the salons are passionate about their jobs and will do anything to protect them, so it’s really hard to talk to them. The ones to target are the ones who are paying to go; they might be persuaded. I would love to see people targeted before they start going to salons, like junior high school. Yeah, middle schools should start having awareness conferences or something in the schools. In schools, they show a picture of a lung from a smoker who died; why don’t we do that with melanoma? There are brochures, but I can talk to people and say, ‘Hey, that was me!’

Dr. Brod asked me to do a television interview. He called me and said,

‘Do you want to do this?’ And I’m like, ‘Oh, be on TV when I’m pregnant…Okay.’ I was eight months pregnant, and on TV! I didn’t care. I didn’t want to miss the opportunity. I was bloated and fat, but I didn’t care. I just wanted my message out.

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June: When I worked at the salon, I didn’t hear many stories of cancer. Since I

left, I have run into so many of my customers who tell me they have cancer. Now,

when I run into people, I tell them, ‘Please don’t tan.’ I will tell them, ‘I have a lot

of skin cancer. Don’t tan.’ Anyone I meet who talks about tanning, I tell them. I

go to a gym, and if someone is heading for the tanning beds I tell them right out,

‘You don’t want to go in there.’

Years ago, Dr. Brod asked me to share my story but I was working. I

needed my job. I loved my job, I loved my customers. I just said to him, ‘It’s my

job.’ That was selfish of me. I did not ever, ever think I would be hurting people.

Now, I know I hurt people. I have run into a lot of them – people that had

melanoma, people with chronic skin cancers. I have said many times I actually

feel guilt because of that. Knowing I’m the one who put them in. I’m the one who

told them, ‘It’s okay.’ I’m the one that told them, ‘I can control how much you’re

getting.’ I deal with it by praying. You have to lay your guilt aside. I have a lot of

cancer so that can be my testimony. I can say, ‘Look at me.’

Greene, Campo and Bannerjee (2010), who have written extensively about tanning messages, suggest that prevention messages should target younger females before tanning behaviors have commenced. It is preferable to develop positive habits at a younger age than to unlearn negative habits later. This is one reason it is important for school children to learn about sun safety and the dangers of tanning before they acquire these habits and before social influence from peers becomes salient.

Adolescents are motivated to adopt tanning behaviors by observing parents, siblings, peers, older teens and celebrity role models who tan, who are perceived to tan, or who are perceived to have a positive attitude toward tanning (Shoveller, Lovato,

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Young & Moffat, 2003; Hoerster et al., 2007; Poorsattar & Hornung, 2007). Adolescence is characteristically a time when confidence and self-esteem are in flux, making this audience particularly susceptible to external messages. It is a crucial time for developing attitudes regarding body image and tanning habits and it is imperative that every possible means, including early interventions, socially relevant messaging, and legislation, are used to protect young people from the dangerous practice of indoor tanning.

Change and Identity

“How has melanoma changed my life? It has become my life.” (Cathy)

Dr. Burkhart: After they’ve had their melanoma, after they’ve had their tragedy,

a stage III or IV melanoma, or after they had to do through chemotherapy, then

you get stories. Stories about how their parents didn’t want them to go, but they

wanted to go anyway. Or you hear them talking about just not caring enough

about the risks at the time, a lot of stories about how it took a year away from

their life. Some feel a lot of guilt, and some of them actually feel a little loss of

purpose in their lives. And then, when they advocate, they feel like, ‘Oh, this has

finally given me some kind of purpose.’

Identity is an ongoing narrative product, resulting from recounting and interpreting the events and relationships in one’s life. An evolving mixture of memories, motives, and meanings become the raw material for the construction of a life story.

Looking back on difficult events or choices requires narrative processing that incorporates those elements into a current and cohesive life story (Pals, 2006).

Stephanie: It has definitely been a life changer, 100%. I can pinpoint everything

that has happened in my life to before melanoma or after melanoma. I wouldn’t

say two totally different personalities, but I would say two totally different views

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on life. Before, it was like, ‘Oh, whatever, I have my whole life ahead of me.’

After the melanoma it was, ‘Okay, you are not as long-lived as you thought.

Anything can happen at any time.’

I am one of the youngest people diagnosed in the state, and Dr. Sullivan

asked me to go on camera, on the local news station, and I said no. I had to do it

in my own way, tell the people I know. I have never been one to talk to strangers.

I have never been, but I guess, getting older, it doesn’t bother me as much as it

used to. She has asked me quite a few times over the years, but this is the first

time I’ve actually done it. I guess it was meant to be. Dr. Sullivan has asked me

many times to talk to people and I never have, but this time I said, ‘Sure.’ I like

the facts, and I like stories, especially if you know the person. Now I can warn

other people and be the person who can say, ‘It happened to me.’

Cathy: How has melanoma changed my life? It has become my life. That’s all I

do, is help people with melanoma; all I do is think about ways to make things

better, to help them live longer and better lives. That is what my mission is all

about. To get empowered, to find that strength when you feel totally… When you

think you are going to die, you really lose a lot of perspective. If you don’t have a

person in your life giving that to you, like I didn’t, you have to get it somewhere.

You do that by knowledge. The more knowledge you gain, the more power you

have.

My turn to think with stories.

When writing about the use of stories in advocacy, I contrasted the process of thinking with stories and thinking about stories by suggesting that thinking with involves a willingness to allow oneself to be changed (Frank, 1995, Morris, 2001). Rather than

184 simply re-telling the patient stories I have excerpted here – or worse, telling the stories I expected to hear – I needed to allow myself to think with the stories I was hearing. In order to do justice to the women who graciously agreed to be interviewed, I needed to separate my own expectations and experiences from theirs, and then let the women and their stories speak for themselves (Riessman, 2002).

Much of what I heard about the experience of being diagnosed and treated for melanoma was different from what I had expected to hear from these patients. I also was surprised by some of the common themes that emerged, themes that I eventually ended up highlighting in this section. But the more I thought with these stories, the more I began to understand how my faulty expectations about what I would hear developed, and more importantly, to appreciate just how rich the stories and personal insights were in the actual stories that I was fortunate to hear.

I had an expectation of ‘cancer stories’ based primarily on my own experience with my daughter’s illness. Her treatment for leukemia involved 3 years of chemotherapy and dozens of hospitalizations. During those years, her health was tenuous; at one point her condition was grave enough to require that she be transported by air-ambulance from our local hospital in Oregon to her cancer-treatment center in California. At other times, her health stabilized, and she was able to return to high school and receive her treatment as an outpatient. Having been there with my daughter for every good day and every bad, for every decision, treatment, and side effect, I felt pretty well versed in the subject of cancer. I knew what it felt like to tell and hear cancer stories.

In addition to the stories from my personal experience, I have engaged with a steady diet of cancer narratives from both the popular press and from scholarly journals. I have read dozens of books and articles chronicling the stories of cancer. These have been

185 stories by and about patients, stories of treatments, recoveries, and lives post-cancer.

Sometimes they were stories with happy endings, or sadly, accounts of tragic deaths and grieving families. These cancer narratives, along with my lived experience, informed my expectations about cancer and cancer patients. Having lived with the fear and disruption of cancer, I feel a bond with others in similar situations. I am often moved by cancer stories, their emotional impact amplified by the empathy of shared experience. A cancer story in the form of a public service announcement warning against indoor tanning was instrumental in my decision to do this project. Sponsored by the AAD, this ad featured a mother who had lost her daughter to melanoma. It was heart-breaking for me to imagine that mother’s loss. I was moved and motivated by her story to seek out other stories of tanning and melanoma, and eventually this project made that possible. Before I met and spoke with the patients who had been recruited, I steeled myself for the stories I was about to hear by reminding myself that I had faced the possibility of my daughter’s death.

“I can do this,” I told myself.

When I walked into my first interview, I was prepared. But, I did not hear the cancer stories of my imagination. One reason was that these women had a lot to say about their lives and choices that went beyond the particulars of treatments and clinical descriptions. An important realization, one that should have figured into my imagining, was the fact that many of these patients had been diagnosed early when their melanoma was still relatively easy to treat. According to the National Cancer Institute (NCI), melanoma rates are going up, and 9,480 deaths in 2013 were attributable to melanoma. It is sobering to hear that more than 76,000 new cases of melanoma were diagnosed in

2013. The good news is that in 84% of those 76,000 new cases the cancer was discovered when it was still localized (NCI, 2013).

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While a localized cancer is still extremely serious, the survival rate is good and the treatment is often a ‘relatively simple’ removal that takes place in the dermatologist’s office. Melanoma that has spread to lymph nodes or metastasized is obviously treated more aggressively. Certainly there are patients with melanoma, like the stage IV patients

Cathy works with through her foundation, who could tell a different cancer story. Patients with more advanced melanoma certainly have illness narratives closer to what I was expecting: full of surgery, chemo and hospitals. In this case I was glad that my expectations were not realized. Thankfully, for most of the women I spoke with, their experience with melanoma was – literally – a different story.

The Unique Challenges of Melanoma

“I mean, I was only 21; it couldn’t be melanoma” (Diana)

In our conversations, I learned about each woman’s tanning history. They talked about their attitudes toward tanning and how they felt about themselves when they had tanned skin. I heard about the physical sensation of tanning, what it was like to acknowledge the danger they had exposed themselves to by tanning, and for those who were still tanning when they were diagnosed, what they went through during the process of quitting. From the women who worked in salons, I gained insight into the pleasure and pressures, the rationalizations and dissonance that they experienced in that setting. I was appalled to hear the salon sales pitches—half-truths and lies designed to reassure unwitting customers and sell more tanning packages. Each woman shared with me what initial concerns brought her to the doctor’s office. I heard their reactions to the diagnosis, how they learned to live with their scars, and how they are navigating the behavioral and relational changes that have been a part of their life post-diagnosis.

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Prior to knowing and caring about these women as individuals, it was easy for me to characterize the choice to return to tanning after a melanoma diagnosis as foolish, even stupid. But after hearing about the struggles to quit, after learning of the financial pressures and emotional ties that made leaving the salon difficult, my attitude changed. I still think tanning is foolish but I don’t think of these women as foolish. Stories did the work of humanizing, and I gained a measure of understanding and empathy for women who did their best to deal with difficult and frightening circumstances.

Listening and thinking about these stories of post-diagnosis experiences, it occurred to me that their stories were different from other cancer stories, in part, because melanoma is different from other types of cancer. It made sense that they would share stories unique to melanoma patients. Other differences are due to the fact that each of these women belongs to a subset of melanoma patients—those who were tanners. Some of those unique elements such as the strong causal link between their disease and tanning, the necessity of lifelong medical oversight, and the need for behavioral vigilance and social adjustments, are represented here in the story themes of this chapter.

After hearing about their tanning histories, I could understand why behavioral choices featured prominently in their stories. Cancers that are less explicitly tied to everyday behaviors such as tanning and sun exposure are probably less likely to result in the kinds of behavioral changes I heard about. One example is the importance of putting on sunscreen. For these patients using sunscreen was a highly significant act. Wearing sunscreen, putting it on religiously, and encouraging others to do so were all ways of taking action. Sunscreen and other sun safety measures were a means to protect themselves and others. It was also a way to make their doctor proud, to signal adherence and agreement with their physician’s recommendations.

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Another unique feature of melanoma is that treatment is ongoing. An oncologist might release a patient who goes a few years without any symptoms of disease. But as

Kristi learned when she became Dr. Sullivan’s patient, melanoma patients need to be under a dermatologist’s care for life. Melanoma places different requirements on the patient-provider relationship. Dr. Brod framed his relationship with patients as partnering, and described the clinical approach as “hands on” because it is only through tactile and visual examinations that dermatologists can help their patients to remain disease free. Rather than treating the disease after the appearance of symptoms, once melanoma has been diagnosed, patients and physicians work together to prevent a recurrence. When I understood this need for a long-term, partnering and preventative relationship, it made sense that the subject of having a trustworthy and thorough physician would be important in the stories of melanoma patients.

Unlike the very public visibility of some side effects of cancer treatments, such as hair loss, the treatment for early stage melanoma can be almost invisible. The seriousness of the condition is often underestimated; consequently, the impact of a melanoma diagnosis on the life of a patient can be misunderstood. Because those diagnosed often seem healthy, because the treatment is usually straightforward, and because skin cancers are relatively common, it is easy to see how people, even friends and family members, could misjudge the seriousness. I heard from these women how hard it could be when people didn’t acknowledge melanoma as a serious illness or when individuals within the social network of patients demonstrated a lack of understanding in other ways. This was tough for the women who had themselves sometimes struggled to understand the consequences of their diagnosis. After Sheila had been dealing with melanoma for years, a newly diagnosed friend confessed she had not understood how serious melanoma was.

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Given her new understanding, this friend urged Sheila to take care of herself. Sheila told me, “That’s what I had been saying for years!” Many of these patients had to cope with the juxtaposition of coming to terms with the personal reality of serious illness and the lack of recognition of its seriousness by others.

In many ways, which are only partially examined here, the experience of melanoma is unique. But one thing that makes illness narratives compelling is that, regardless of the disease or condition, there are commonalities in the experience of serious illness. Despite the unique features, the experience of living with melanoma is not so different from the experiences of others who have been sidetracked, stymied, stopped, or stunned by illness. For example, melanoma patients without visible signs of illness have something in common with countless others who might struggle because their condition is invisible or contested. Conversely, melanoma patients who live with the visible scars of their treatments must, like others whose illness or treatment has altered their physical appearance, contend with stares, questions, and decisions about covering up. Having a serious diagnosis, fearing recurrence, and the need for ongoing treatment mean that melanoma is life-interrupting. And, like any other patients with serious and/or chronic conditions, the women I spoke with found themselves needing to make adjustments, needing to find new ways of defining ‘normal,’ and needing to achieve a balance between their identity as a patient and their identity(ies) as a former/future/current healthy person. Perhaps it is more accurate to say that each woman, as part of the process of defining that new normal, worked to discard old identities and behaviors and to integrate new or changed identities into their larger conception of self.

This integration was and is brought about using stories (Bruner, 2002b).

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Illness is a call to stories (Frank, 1995), but even in health the process of identity change involves narrative action. We craft and perform the stories of our lives for and with others. We shape our stories in response to feedback and through collaboration with others, and we are shaped by our own narratives as we imagine, rehearse and internalize our own stories. We are an important audience for our own stories. The self-story that evolves in response to significant change becomes the basis for self-identities, self- concept and self-awareness (Irvine, Davidson, Hoy & Lowe-Strong, 2009). One’s very sense of self is ultimately a narrative of being and becoming.

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CHAPTER 7: NARRATIVE MECHANISMS OF CHANGE

“A narrative is initiated when a person is impelled to tell others about something” (Labov, 2006, p. 38)

A cancer diagnosis changes a person. These changes may be far reaching, may include attitude and behavior changes, changes in relationships and social networks, even identity changes and redefinitions of self. Because a diagnosis marks a significant demarcation opening a gap between past and present, stories are necessary to bridge the disruption, restore cohesion, and reorient one’s sense of identity. This chapter includes a brief overview of identity theory, role salience, and the storied processes involved in identity change. We will see how such processes were used by the women I spoke with in their attempts to make the behavioral and relational changes necessary as they first acquired, then adjusted to, their new roles as cancer survivors.

The women I interviewed, like others who share illness narratives, framed their stories using culturally familiar patterns. In addressing these, Arthur Frank’s categories of illness narratives provide some insight into the story choices of my interviewees. Later in the chapter we will consider the powerful impact of supportive care providers on present and future illness and identity stories. Because changed stories can mean changed lives, it behooves all of us to become narratively resourceful—skilled in the artful and intentional use of stories. Stories represent choices and embody actions that become the basis, and perhaps the means, of a positive outlook, personal growth and hope for the future. I close the chapter with some examples of intentional stories and an exhortation regarding training that develops narrative resourcefulness.

Being diagnosed with a life-threatening condition is a life-altering experience.

Serious illness interrupts the story of our lives, our narrative trajectories. The plans and

192 expectations we have regarding what should come next in our lives or the lives of our loved ones, are replaced by the unrelenting demands of an unexpected, unforeseen, and unwelcome change of plans. Confronted with illness, patients and families, friends and physicians are forced to acknowledge a new storyline. Serious illness as a result of tanning is not a story one chooses, even if it is a story of one's own making. But story- making is ongoing and communal even in the midst of illness. And perhaps especially important in the midst of illness, the stories we create, contribute to, and confirm can be a powerful means of coping, communicating, and connecting. Stories help us to achieve a sense of coherence in our lives and provide us with ways to think about disruptions and upsets when the story we expected is not the story that has unfolded.

According to Bruner (2002a), beyond just dealing with reversals, stories become

“our armamentarium” or the equipment we need to complete our undertaking (p. 29).

One may not construe illness as a positive plot development; even so, illness narratives can serve a positive function. They can facilitate understanding between patients and caregivers (Charon, 2001), be hope-promoting (McEntyre, 2006), and though illness can rob one’s sense of control and of voice, a personal illness narrative can be voice-restoring

(Frank, 1995).

Every woman introduced in the previous chapter has been changed by her experience with cancer and many of those changes are reflected in new identity stories, changed perspectives, and revised goals. Change is inevitable because once diagnosed, an individual is no longer the same person he or she was before cancer. Walking in to a doctor’s office on Monday and hearing you have melanoma makes you a different person on Tuesday. You are now a person with melanoma, a patient, a patient with cancer, and

193 even if you don’t want to think about, even if you don’t plan to change any of your activities, you are changed by the knowledge. You have been redefined.

Identity change is sometimes imposed by an outside event or experience that makes the adoption of a new role inevitable. Such change-requiring junctures can result from life events that are positively valenced, like graduation, a marriage, or a move.

Change also can stem from negatively valenced events such as, divorce, serious illness, or the death of a loved one. For example, if it was once true that I was married, or lived in

Kansas or that I used to be a surfer, who was a tanned and athletic picture of health but now I am not, then those former descriptions are no longer accurate. Those earlier ways of thinking about myself and that basis for relating to others no longer works. I must account for my current status and define who I am presently (Charmaz, 2009; Rimmon-

Kenan, 1999). The stories that are used to explain who I am and how I got here can impact how I and others feel about my choices in the past, my experience of the present, and my possibilities in the future. The resulting stories of who I was then, and who I am now, are not merely a factual recitation, or a descriptive personal history; instead, such stories can become the very basis of my sense of self (Ochs & Capps, 1996).

When I asked interviewees how they were different after their diagnoses, I heard about new priorities, revised self-concepts, and everyday behaviors that had changed.

Using the lens of role-based identity theory (Stryker, 2007), we can consider such changes as the result of new and redefined roles. Identity theory posits that an individual’s sense of self is multifaceted and comprised of multiple role identities

(Stryker, 2007). Identity, rather than being a singular construct, is actually an evolving configuration of a person’s traits and roles. These traits and roles, which make up identity and define relationships, are the basis of the sense of self. For each of these roles, there is

194 a corresponding idea about appropriate role behaviors. Ideas about role behaviors are often developed in social contexts. Thus, behavioral choices are heavily influenced by relationships, networks, and influential others who become literal role-models of behavior. Accordingly, a decision to choose one behavior over another is influenced by the roles we recognize as part of our multifaceted selves, and by the personal and social expectations regarding the value and appropriateness of any particular role behavior.

Identities are, “Self-cognitions tied to roles and, through roles, to positions in organized social relationships” (Stryker, 2007 p.1092). A person’s self-concept, which includes traits and roles and the collection of meanings that are attributed to those roles, is a significant determiner of actions and behaviors. This sense of self is relatively constant. Changes that result from the imposition of a new identity (patient), new attributions (tanning is dangerous) or new definitions (healthy means I see the doctor twice a year) require both emotional labor and storied rationalizations. Certainly the role of patient was a new and evolving part of each woman’s identity. Each had to grapple with what being a patient meant in terms of both outward behaviors and inward beliefs.

The women I spoke with all shared stories about life before and after melanoma and skin cancer interrupted their future plans. Through their stories, I got a glimpse of the emotional work they were doing to navigate these identity changes and to incorporate being a cancer patient into the larger stories of their lives.

For the women I interviewed, change didn’t happen all at once and neither did the recognition that change was necessary. But on some level each woman had to redefine herself, and this redefining eventually meant that roles and role behaviors had to be reexamined with adjusted goals in mind. In some cases, relational changes became necessary for the sake of health. The individuals or the social networks that had

195 previously provided role feedback had to be jettisoned or reconfigured. In every case, narrative was instrumental in the process of transition (Ott-Anderson & Geist-Martin,

2003). The experience of illness is social and emotional. Emotional needs that require an outlet and cognitive needs for explanations and understanding make interpersonal relationships important. The illness experience may strain or deepen relationships. New relationships may form with doctors or other providers. The social milieu of the patient will influence and be influenced by the illness experience (Ott-Anderson & Geist-Martin,

2003; Davison, Pennebaker & Dickerson, 2000).

Asbring writes that biographical disruptions require a biographical response. We might say a story disruption requires a new story. This biographical work may include an accounting of what has been lost and a redefining of identity. According to identity theory, such a redefining can involve a change in roles or the salience of roles, a changed conception of appropriate role behaviors, or even a changed social network.

Social Choices and Identity

Roles may be personal, but they are shaped and validated by others. Positive validation can impact the likelihood that a role will become central or salient to a person’s identity. Not every role or identity is central to self-identity. Roles are hierarchically ordered, so the perception that an identity is more central increases the likelihood that the behaviors associated with that role will be invoked. A particular identity can be considered “salient” if there is a commitment to the role or if the behaviors associated with the role would be costly to give up. Dianna referred to her tanning as an addiction; by definition, any addictive behavior is difficult to jettison.

Diana shared the opinion of her peers that having tanned skin was desirable.

Because she valued being tan, it was easy to perform appropriately in her role as a

196 tanning salon employee. As a conscientious employee she stayed tanned and encouraged others to tan at the maximum level. She socialized in an environment where tanning was normal behavior and tanning dangers were minimized or ignored. But in her role as little sister, she finally agreed to her older sister’s persistent request that she be examined by a dermatologist. Learning she had melanoma, Diana was forced to start the process of identity change.

In the environment of the dermatology clinic, Diana learned that tanning was a dangerous behavior. According to her physician, what was always a foolish choice, tanning, was for melanoma patients a potentially life-threatening choice. She continued to tan, but was troubled by the facts she was learning from her dermatologist and moved by the exhortations she heard from her sister. Diana found that the pleasure she had experienced when tanning and the ease with which she once carried out her duties as a salon employee were affected. But it wasn’t until her sister broke down crying that Diana took action. Feeling guilty about the worry and pain her sister was experiencing as a result of her continued tanning, Diana realized that her role as sister was more salient, and ultimately more important, than her role as Diana the tanning salon employee. After that episode Diana quit tanning and left the salon permanently, leaving behind the role of salon employee, and eventually coming to terms with her tanning addiction and her new role as a melanoma patient. Now, her role as a mother is salient, and health-preserving behaviors are appropriate.

Because identities and roles are shaped and maintained through social interaction, making changes involve a social cost. For June, her role as the manager of a tanning parlor and a mother figure to younger workers had been salient. Now, she works to cope with the guilt she feels about the choices and behaviors that she enacted in that role.

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Believing herself to be a caring person, she is keenly aware of the discrepancy between truly caring for others and her behavior at the salon—putting people in tanning beds, thereby putting them at risk. When Diana rationalized that simply reducing her tanning after her diagnosis would be sufficient, her identity as a melanoma patient was not salient. Eventually, both June and Diana experienced changes – some intentional, some not – that increased the salience of roles such as patient, former tanner, and advocate for skin protection.

Individual identities are a social product. It is in social contexts that role identities are conceived, rehearsed, narrated, and validated. Influential role models can provide a standard by which we measure our own role behaviors, adjusting as necessary based on the feedback we receive and our perceptions of group norms and expectations. The process of identity formation and change was even more challenging for women who were diagnosed at a young age. Adolescence is a time of negotiation between connection and autonomy, complicated by relationship fluctuations with parents and friends, and decisions regarding personal and social identity (Rawlins, 1992). Conflicts sometimes arise as young people struggle to be accepted as a group member at the same time experience forces them to seek greater autonomy. In a study of adolescent identity and narrative the authors report that identity development is strengthened in adolescents who utilize the storytelling of important life events as a means of constructing personal insights and they are likely to continue the process as adults (Weeks & Pasupathi, 2010).

For Diana, Sheila and Stephanie, all of whom were diagnosed by age 21, their peers believed that being tan increased one’s attractiveness, a highly valued attribute.

Visiting the tanning salon or lying out in the sun was a positively valued, socially appropriate means to that end. Acknowledging that tanning was the cause of their cancer

198 was tantamount to saying their friends and co-workers were wrong, foolish, or worse.

There are few illnesses that involve such a direct link between a socially supported, behavioral cause and the disease effect. The women I interviewed understood this link and were compelled to reconsider not simply their behavior choices but also the social milieu that supported those choices. Tanning before prom or a wedding, driving with the top down, spending a day swimming at the beach or gardening with a spouse are examples of the kinds of activities that these women had previously participated in and enjoyed. Now, enjoyable or not, such activities represent a danger and must be avoided.

Life had to change.

It is one thing to intentionally make changes as a result of new goals or shifting priorities; it is another thing altogether to have an unwelcome change forced upon you due to the disruption of illness. That is change one must come to terms with. Coming to terms with the diagnosis each woman received from their dermatologist involved accepting the reality of the present, whatever that might entail—examinations, surgery, tests, stiches, scars, pain. And coming to terms also involved a reckoning with the past— facing the consequences of their choices, their desire to be tan, the situations and relationships that encouraged or discouraged tanning, and the future—the potential of recurrence, the need for medical care, the need for behavioral vigilance. Clearly, this coming to terms is a communicative process that happens over time, a process helped or hindered by the structural, social, and relational dynamics present in each person’s life

(Negele & Habermas, 2010; Ott-Anderson & Geist-Martin, 2003; Pals, 2006).

Despite having received a diagnosis of cancer, some of the women felt others dismissed their illness as not worth worrying about. Patients shared stories with me about instances when their families or friends didn’t recognize the seriousness, or the potential

199 seriousness of their diagnosis. To recognize is to legitimize, and for some the legitimizing that might have served an empathy-building function was missing. Whatever the extent of the damage, complexity of treatment, or degree of disruption to daily activities, the cancer diagnosis was life-altering, and when others failed to recognize or acknowledge that fact, it hurt.

What was even more hurtful than people failing to recognize the seriousness of a melanoma diagnosis were the friends and relatives who continued to patronize tanning salons. Despite the evidence of experience, some friends and family members persisted in their belief that tanning was safe or that they were somehow immune from its danger. It was one thing not to be able to dissuade acquaintances, but when close friends and family members made the decision to continue tanning, it was perceived as invalidating. After experiencing the disruption of melanoma caused by their indoor tanning, it felt like a personal affront when those closest to them ignored their hard-won advice. As a result, relationships were negatively impacted and sometimes curtailed altogether.

Writing about women with chronic fatigue syndrome (CFS) and fibromyalgia,

Asbring (2000) referred to the fact that CFS was a low-status illness, as well as a contested illness. While melanoma is neither low-status nor contested by most healthcare providers, there are several areas of correspondence between the CFS patients Asbring wrote about and the women I interviewed. Many of the women I spoke with had the experience of someone minimizing their disease as just skin cancer. Contesting someone’s illness or contesting her experience of that illness is similarly de-legitimizing.

Diana told me about a time when the local paper interviewed her about her cancer. When the article came out her colleagues at work clipped Diana’s picture and hung it on the wall. She was dismayed that although her employers seemed proud that her

200 picture was in the paper, the substance of the article was never discussed. She felt disappointed that neither her employers nor her co-workers seemed interested in the details of her illness. For Cathy, social support was almost completely lacking. Because she was only dealing with skin cancer, Cathy’s family wondered aloud why she didn’t just “get over it.”

Each individual eventually came to the point of acknowledging that indoor tanning was the likely cause of her cancer. Most also recognized that simply acknowledging that fact would likely have social ramifications. In order to avoid hurting her coworkers’ feelings, Diana left her job at the tanning salon without telling anyone but the manager about her cancer. June had to agree to disagree when her former boss assured her that the tanning parlor had nothing to do with her cancers. And it hurt when the coworkers, who were close enough to refer to June as ‘Mom’, just laughed off her warnings about the dangers associated with tanning. Sheila described feeling betrayed by her good friend who continues to tan despite having seen Sheila go through a melanoma diagnosis and treatment. Stephanie’s mom is vocal about what happened to her daughter as a result of tanning but she has been told by her coworkers to stop giving them advice about tanning because they are old enough to decide for themselves.

Asbring pointed out that, at times, the women with CFS were unable to engage in the same activities they had previously participated in. The limitations imposed by their illness resulted in a disruption to the biographical plans or story projections that were present prior to illness. Similarly, the women I spoke with also had to alter their activities and adjust their stories. For Stephanie, the physical limitations necessitated by multiple incisions, coupled with her many absences due to doctor’s appointments, left her unable to carry out the responsibilities of her veterinary technician training. She was forced to

201 drop out of the program and give up her career goal. Diana left her job to avoid temptation. For others, illness meant that school plans, outdoor activities, vacations, and family trips had to be changed or curtailed.

Narrative integration involves coming to terms with a livable, plausible explanation for events and experiences. For June and Diana, admitting their bosses knew about the potential dangers of tanning beds, and still allowed them to be submitted to those dangers, was a difficult task. Navigating that difficulty narratively involved considering multiple storylines. Verbalizing an answer to my questions meant allowing the space for previously unconsidered possibilities. Talking with me about what the boss knew or didn’t know, the possible storylines each woman considered included a range of assumptions. Each started with the stories they hoped were true— that the bosses believed it was safe, and that they just lacked knowledge, and each arrived at the stories they feared were true—that their bosses ignored the danger and did it for the money.

Another occasion for multiple storylines is thinking about one’s life in time: considering the past and the present, imagining what might have been, and what will yet be. Taking steps toward narrative integration and identity-transformation involve facing what has been lost or changed, as well as acknowledging what has been gained (Asbring, 2000).

The impact of time on biographical identity work was evident in the before- cancer/after-cancer perspectives that were part of every story I heard. The stories of the past become significant in relation to the present and future (Cunliffe, Luhman & Boje,

2004; Ochs & Capps, 1996). Serious illness reminds us of the possibility of death; facing our mortality places us firmly in time and space so time always matters in illness narratives. In the case of the women with CFS, many languished with symptoms for years prior to a diagnosis. For the melanoma patients I spoke with, their diagnosis came as a

202 surprise; the disease was present but usually without symptoms or illness. This meant that for some the change from carefree young adult with nothing but possibilities in her future to worried grown-up facing the possibility of recurrence happened virtually overnight.

It is not hard to understand how the process of reconciling these identities might be difficult. Stephanie spoke of being angry for a long time. Cathy, for whom the role of expectant-mother was salient, made treatment decisions based on what would be safest for her unborn child. Everyone commented that over time, the trust each had for her doctor, eventually lead to reduced anxiety and the process of integration became easier.

Like the women with CFS, 80% of whom described gaining new insight from their illness experiences, the women I interviewed spent considerably more time describing positive changes than describing loss.

In the stories I heard about pre-cancer lives marked by childhood innocence and willful ignorance, loss was implied but not often explicitly acknowledged. References were made to learning hard lessons and growing up quickly, and some reminiscing was characterized by a slight wistfulness. These included comments about no longer being able to enjoy time in the sun. Giving up time in the sun, or in the tanning bed, meant a loss of formerly pleasurable activities and attitudes—the sensation of warmth, a carefree attitude, a means of relaxing, the freedom to schedule outdoor activities any time of day, being unencumbered by the need for sun-safety, a body without scars, and the perception of a more attractive appearance.

It is important to note that, although our conversations included the acknowledgement of painful realities related to their illnesses that could be construed as loss, there was also recognition that their illness experiences had produced positive changes (Irvine, Davidson, Hoy & Lowe-Strong, 2009; Watson, 2009). The experience of

203 illness that results in a “biographical disruption” may involve seemingly paradoxical losses and gains (Asbring 2000, p. 318). Identity is a definition of self as multifaceted, different from others, and marked by aspirational elements or goals (Burke, 1980,

Charmaz, 1995). Charmaz uses the term, “preferred identity” in reference to the hopes and goals individuals aspire to in their lives, the kind of person they hope to be, or the futures they hope to realize (Charmaz, 1995, p. 671). Illness may interrupt the planned trajectory of preferred identities, but illness does not eliminate the presence of identity goals.

There are “identity trade-offs” that sometimes become necessary with illness that involve selecting certain roles and letting go of others (Charmaz, 2007, p. 659). Defining the positive value of those new roles facilitates the ability to frame such changes as gains.

This may be as simple and as difficult as choosing to ‘look on the bright side.’ I saw evidence of that choice in positive upbeat demeanors and I heard evidence of such gains, in descriptions of hard-won growth, maturity, and wisdom.

Identity Theory and Storying New Roles

While answering my questions regarding their personal sense of culpability, guilt, or ignorance, some women told me about their teen-aged resistance to the advice from their parents not to tan in favor of the peer-supported position that a tan was desirable and tanning was safe. Some who were diagnosed when they were older suggested that times were different when they were teens, and that unlike teens today they had never heard credible information regarding tanning dangers. Some faulted schools for failing to instruct students regarding the need for general sun safety, noting that although they routinely provide health and safety lessons on a variety of subjects, tanning was never included. Whatever the reasons—peer pressure, family circumstances, or lack of

204 available information, everyone acknowledged their own responsibility. They each made a conscious choice to tan. They each made the choice for one primary reason; every woman and girl who went to the salon believed that having tanned skin would enhance her appearance, and most still believe this to be true. Thinking and talking about those choices and the consequences that ensued, most shared that they had gained valuable personal insights throughout the process. Most now view themselves as gaining strength in the area of personal resolve, of being capable of acting autonomously if necessary, and most are willing to share their story, even when it is uncomfortable, for another’s good.

By sharing their own stories, they hoped to impact the stories of others. In the telling and retelling, they also developed and reinforced the self-stories that supported their evolving self-concepts and strengthened their personal beliefs.

Behaviors are a manifestation of inward beliefs and choices. The storied response to a new and unexpected change, such as a serious diagnosis, will help to shape the new roles and behaviors that are adopted as part of a post-diagnosis identity. Identities are formed in response to particular situations, and plans for actions or behaviors reinforce and confirm those identities (Burke & Reitzes, 1981). Given the fact that there was a direct link between their earlier behavioral choices and their cancers, it is not surprising that new behavioral choices, like using sunscreen, were so important. Encouraging others to use sunscreen was a fitting role behavior for a concerned mother, wife or friend. Being the person to remind others about sunscreen fit their new roles, or evolving roles such as the patient advocate, anti-tanning campaigner, or the concerned grade school teacher.

These are roles that are consistent with changed identities, roles that have become more important or salient in light of the illness experience.

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For the patients I spoke with, initial identity changes took place at a time of identity upheaval, when an unexpected diagnosis, a biographical disruption, a narrative wreck, turned everything upside down. What Asbring (2000) refers to as biographical disruption, and Frank (1995) calls “narrative wreckage” (p. 68) is the collision of a prior life plan with a current diagnosis that has the potential to change everything. Frank writes that in times of wreckage and uncertainty one can lose their very sense of self. Illness can interrupt the continuity of our experience, overwhelm us with outsiders’ perspectives and call into question our previously adequate schemas. Frank refers to Schafer’s concept of

“self-stories” as formative models useful for reclaiming a sense of self (Schafer, 1981, cited by Frank, p. 55).

Shared outwardly, stories of self are actions, the means for asserting personhood to others. Inwardly, self-stories make personal reflection possible and become the basis for self-evaluation and self-concept. It is through the incorporation of story changes that a coherent sense of moving purposefully through life and being meaningfully with others is achieved. Life and change are expressed and explained in stories. These stories, offered in response to the ever-changing panoply of who, what, when, and why questions, provide rationales, justifications, and answers. Stories make sharing wisdom, insights, and personal truths possible (Sharf & Vanderford, 2003), and they are essential to an evolving definition of self. Without them one would remain primarily the product of someone else’s making. The stories we imagine, create, believe, share, tell, and perform provide the interface of life—the place of meeting, communicating, relating, and affecting.

Because of this, stories are essential and storytelling is universal. The structure a story takes, however, varies among cultural groups. Within a culture story types are

206 recognizable; the familiar structures and overarching themes meet the expectations of audience members, and provide a greater chance of resonance (Carter-Black, 2007).

Children learning to compose formal stories are taught that their stories should have a beginning, middle and an end. As their efforts become more sophisticated, they learn to include conflicts, resolutions and a dénouement. Countless unique and individual story variations can and do exist within the broader story frames allowing a comfortable mix of familiarity and suspense. A culturally derived understanding of story forms influences the composition of stories we tell ourselves and others (Bruner, 2002b; Ochs & Capps,

1996). Even in the midst of illness and disruption, stories are organized to be comprehensible.

Quest Stories and Narrative Resourcefulness

Frank (1995) identifies three broad types, or plots for illness narratives: the restitution plot with an emphasis of returning to health, the chaos story that describes acute disruption, and the quest narrative where illness is a metaphorical journey, a seeking for some good that may be gained by the experience. Although each individual story is unique, the overarching story type is familiar. I heard such story types when patients spoke with me. Frank explains that although an illness narrative may combine all of these themes in multiple and changing combinations, recognizing the distinctive character of each story theme remains useful as an aid for listening and learning (Frank,

1995).

Recognizing themes as overlapping and changeable, I find it prudent to take a broad approach to categorizing the story themes I have identified. In an interview additional prudence is required because in contrast to an illness narrative that is delivered unbidden – or at least uninterrupted – stories that are told in response to an interviewer’s

207 questions are not singular story constructions. Responses to questions may be less unified by a single narrative plot line than a spontaneous, intact story. The stories I heard were told in response to my questions, but our exchanges were also conversations, dialogues marked by mutual influence. Nonetheless, I hoped to gain some additional understanding and insight by considering the story forms that Frank described. Examining the transcripts of our conversations, I recognized that the elements of each story type described by Frank—restoration, chaos and quest – were present in the stories I heard.

The restitution plot involves a return to health and wholeness. A restitution story might tell of medicine that cures, a recovery that is complete, or patients working in conjunction with medical professionals to become “good as new” (p. 77). Restitution elements were present in stories I was told about dutifully keeping appointments and applying sunscreen, or of catching the melanoma early enough that no additional treatment would be necessary. On some level all of the women expressed hope that if they were very good patients, their reward would be a future without cancer. Restitution stories look forward to just such happy endings—no more cancer, and picking up where you left off.

A chaos story, unlike a restitution plot, isn’t a story of happy endings. Sometimes, there is not even an end in sight, only an unremittingly painful present. A chaos story captures the sense of undone-ness that precludes possibilities. Being in the midst of such chaos may leave one without the strength for description or reflection. This story must be told retrospectively from a perspective outside the chaos experience. Stephanie shared a chaos story when she described how angry and undone she felt after her diagnosis.

Stephanie and her family were left reeling when she was diagnosed at 17 with the same type of cancer that had recently killed her uncle. The time immediately after her

208 diagnosis was hard because everything Stephanie had imagined for her future seemed to evaporate. In those first few years after her diagnosis, she endured what felt like a complete disruption of her plans. For an extended period of time she experienced unfocused, generalized anger, and her unwillingness to talk with people outside her immediate family left her feeling isolated. She described those earlier hard times to me, but she also made it clear that with the help of her faith and her family, she had moved beyond the chaos. Eventually, as time passed she was able to refocus her goals and her anger dissipated. Her increased comfort talking to outsiders was evidenced by her willingness to be interviewed. Stephanie had weathered the chaos and emerged a changed person.

Although elements of restitution and chaos were present, it is the quest narrative that most typified the stories I heard. We are culturally disposed to think of time as passing in an orderly sequence and to envision life as progressive movement. We expect ideally that the movement of our lives will take us toward planned-for destinations— goals we hope to achieve, and the people we want to one day become. But illness can interrupt our plans and force us to stop or change directions. Each of the women I interviewed thought their lives were moving in a certain direction until a cancer diagnosis intervened. As a result, the planned trajectory had to be adjusted, and although they still moved forward in their lives, they found themselves somewhere other than where they had imagined prior to their diagnosis.

The quest narrative is the story of facing obstacles and being changed by the process. In describing their experiences with cancer, several women spoke metaphorically of roads or obstacles in a manner typical for quest narratives. Cathy spoke of being on a journey with cancer, and I suspect that each would agree that journey was

209 an apt metaphor. For some persons the journey had begun recently; Liz was diagnosed in

2013. The cancer journey for Kristi began many years ago. Some journeys have been lonelier than others: Cathy travelled a long way without support from her family or her physician. For others, their journey has been harder, maybe because their cancer was more advanced, or their treatment more invasive, or a hundred other things that make living with cancer difficult. Despite the variations, each individual’s experience with cancer was consistent in several important ways.

Shared features of these stories could be told through the metaphor of a cancer journey, one that everyone I spoke with would recognize. Each planned to be on this journey for the rest of her life; each found the trip easier with a guide; and each understood that the journey had changed them. Continuing the metaphor, every journey has a beginning, and so does every story. Stories that are created in response to illness often include a beginning that addresses what happened to cause the illness (Frank,

1995). For every woman I interviewed the beginning of her illness story and the start of her cancer journey was marked with one simple choice. That choice stemmed from the desire to be tan. The accountings of their journeys from that first visit to a tanning salon to the present when they sat with me in an examination room at their dermatologists’ offices, were stories of changed identities.

Guides for this journey are important and in offices and clinics, doctors and other medical staff employ stories to educate, inform, and reassure. This teaching and guiding helps to ease the transition of new patients as they learn the signposts of illness—what to expect, what to look out for, and what to avoid. Stories were even a means for patients to rehearse and implement the kind of role changes necessitated by their illnesses. For Liz, who had already stopped tanning and who was working at a dermatology clinic when she

210 was diagnosed, day-to-day activities didn’t change much. For others, like Stephanie who had to drop out of school, and for Diana and June who were still working in tanning parlors, it felt like everything in their world was changing. Polkinghorne (1988) suggests that rewriting the story of self requires more than a change of identity; it involves a changed view of the world. Such changes can be difficult. Conceptualizing the self as an unfolding narrative means that past events are understood as meaningful in the context of an evolving but present-tense story. Sometimes unexpected life events require the reconstruction of one’s personal narrative. When that is the case, it often becomes necessary to incorporate new storylines or imagine new interpretations for past events

(Polkinghorne, 1988). The patients I interviewed used new or changed stories to explain their illnesses, answer questions from the curious, and to convince others not to make the same mistakes. Although these are stories of self, others are involved as both characters and contributors. Significant individuals were prominently featured in the stories of illness and change and significant individuals contributed to story construction, content and tone. For these women, an important component of their illness experience was the relationship each had with her physician. Physicians, in their role as guides for this journey can significantly impact the particulars of an individual’s illness narrative, thereby shaping her outlook on the future.

Stories for the sake of health.

This shaping function of stories is acknowledged in the following categorization.

Sunwolf (2005), describes five functional categories that shared stories serve in medical contexts: (1) to seed learning, (2) as a tool for creating new healing realities, (3) as a scrapbook for memories, (4) as a foreflash to future healing possibilities, and (5) as a bridge for connecting people (p. 2). I am intrigued by this acknowledgement of storying

211 future possibilities. Much that is written about narrative medicine assigns the role of narrator to the patient and emphasizes the benefits patients receive when they are able to tell their stories and be heard by their physicians acting as witnesses (Steiner, 2005;

Sunwolf, 2005). But physicians can contribute their own stories about the impact of illness on life, and in so doing, influence the patient’s vision of the future. Rawlins described narrative medicine like a civic friendship, care givers and care receivers in a relationship of mutual respect and trust (2009). By talking about the future with knowledge informed by their medical expertise, an understanding of the patient’s experience, and compassion regarding individual needs, physician stories can function in ways described by Sunwolf. Many of the doctors I interviewed are practicing narrative medicine even without knowing the term.

All of the patients profiled here are currently under the care of physicians who are skilled practitioners, relationally adept, and sensitive to patient stories. That just might have something to do with the fact that the patients I spoke with were friendly, open, willing to share their stories, and optimistic about the future. In general, patients who feel heard, who are informed, and who perceive their physician as supportive are more likely to feel trust, negotiate treatment and comply with medical advice (Gray, 2009). Of course it is impossible to know how much the relationship with their physicians contributed to their outlook, but it is easy to imagine how devastating such a diagnosis could be without such care. Arguing that too often modern medicine values measurable, scientific skills over soft skills, Greenhalgh and Hurwitz suggest that compared to the technical and scientific aspects of treatment, performing the core clinical skills of, “listening, questioning, explaining and interpreting…likely have as much influence on the outcome of the illness from the patient’s point of view” (1999 p. 50). Thinking of the importance

212 of these soft skills, I am reminded of a conversation with Dr. Brod, where he told me he was saddened that his Meyers-Briggs score indicated he was a thinker because he thought of himself as a feeling person. Clearly, he values and exhibits these core skills in every area of his professional life.

Changed Identities, Changed Stories, and Hope

For obvious reasons, the relationship that each woman had with her physician was one of special significance. Not everyone was lucky enough to start their cancer journeys with physicians whom they perceived as caring and capable. But when that was the case, the transition to cancer patient was somewhat eased by the presence of a guide—a supportive physician. As Dr. Brod pointed out, for patients with a new diagnosis of melanoma, their dermatologists were uniquely qualified to understand their situation, and to offer guidance and reassurance. In some cases, the doctor was the only person who seemed to understand the significance of their new status as melanoma patients.

I am not suggesting that simply by using positive talk or positive thinking, everything will become magically better. But positive framing of the future with melanoma could very well support the development of an optimistic or hopeful view of the future. The optimism I heard from these patients is quite different from the “blind optimism” of denial that sometimes characterized their choices before cancer (Radcliffe

& Klein, 2002). Several patients admitted that their youthful attitudes of invincibility, have now been replaced by adult concerns of mortality. The illusion of invincibility has been shattered and the folly and falsity of that kind of optimism has become painfully apparent. Their current optimism is generative; it is supported with accurate information and reinforced by hope. It is generative because unlike blind optimism that refuses to see alternatives or hear ideas that would lead to change, a generative optimism seeks out

213 possibilities for being and becoming. Fredrickson (2000) writes, “Positive emotions, when tapped effectively, can optimize health, subjective well-being and psychological resilience” (p. 2). Diana looked forward to increasing her advocacy work especially when her kids got a little older. She was excited at the thought of being a spokesperson for melanoma patients. Her conversation with me about the future was full of imagined possibilities of positive outcomes. The expectation that the future would be good, that they would be healthier and able to continue working toward their goals was true for everyone I spoke with. Certainly the specter of recurrence was present but the stories they told me were hopeful. These narratives of future plans were not stories of being carried into the future by fate or chance, instead, these stories contained descriptions of choice and control.

Now unwilling to relinquish control for the sake of what is popular or fashionable, they narrated making decisions based on what is good for their heath. There are not only interpersonal stakes to manage; their health is at stake so conversations that reiterate positive plans reinforce their narrative agency (Charmaz, 1995; Strong & Knight, 2012).

The narrative themes of positive prognosis, wise behavioral choices, and control through vigilance were in many cases introduced by their physician. Dr. Brod explains to patients that he will partner with them to manage their melanoma, and he assures them that his goal is to help them function extremely well in their everyday lives (personal interview,

2013). This story that emerged from their relationship with their physician was then repeated to friends and family, and in the telling the ideas were reinforced and incorporated into personal narratives (Horton-Salway, 2001). And like other self-story themes, agency and positivity exerted a shaping influence on their outlooks for the future.

By making plans, being responsible for their actions, and accepting support from their

214 physician and others, these women took an active role in defining the changes to their identity (Striano, 2012) while employing positive coping styles (Monzoni & Reuber,

2009). “While stories are told for as many different reasons as there are storytellers, the very act of telling and retelling implies the presence of hope” (Herzog, 2006, p. 263).

Sunwolf writes that the power of narrative to heal is widely accepted (2005).

Coulehan echoes this idea that “illness and healing are inextricably bound to narrative”

(2003, p. 94). Both Sunwolf and Coulehan are talking about a dialogical relationship between a patient and physician that is marked by the physician’s willingness to enter into a patient’s reality and to develop an empathic bond through listening and attending.

Within the context of this dialogical relationship, it is interesting to consider the health promoting possibilities that a hope-building story might contribute. Hope is so essential to the act of imagining future possibilities that without it a type of narrative finalization occurs. This involves giving up on the story—no changes, no surprises, no possibilities.

Freeman (2003) suggests that narrative foreclosure, believing a particular outcome is inevitable, results in a loss of hope. I suspect the reverse is also true; without hope it seems our stories are virtually over. Narrative foreclosure can have a detrimental effect on the dual processes of action and feelings (Ochs & Capps, 1996). Depression and other negative emotion states narrow one’s repertoire for thinking and action, as well as reduce receptivity to new ideas. Conversely, positive emotions are associated with broader thinking, flexibility, and the production of future plans (Fredrickson, 2000). Dialogical relationships marked by compassionate listening, convergence (Randall, 2009), generosity (Frank, 2008), care (Fredrickson, 2000), and openness can be an antidote for narrative foreclosure. A physician in a dialogical relationship brings a willingness to become a part of the patient’s story and encourages possibility thinking. Kirby explains,

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“Narrative expression is not mere communication of information, but is a constitutive and synthetic activity” (1991 p. 92). Instead of relinquishing one’s story to fate, a patient with such support can instead re-group, re-envision and revise (Harter, 2009), out of such revision, hope may emerge.

Jerome Groopman is a physician who has produced a remarkable book on the subject of hope. In The Anatomy of Hope, he explains that hope can influence physiology as well as psychology. Feeling hopeful may actually alter neurochemistry in such a way as to make recovery more likely. Examining the process of hope in response to illness,

Wiles, Cott and Gibson write, “It is imperative that healthcare professionals understand the function of hope in the experience of illness (2008, p. 571). Science is just beginning to understand, what many people have always believed, that hope contributes to health.

Groopman writes in the introduction, “During the course of an illness, then, hope can be imagined as a domino effect, a chain reaction in which each link makes improvement more likely. It changes us profoundly in body and spirit” (2005, pp. xvi-xvii).

I am pleased but not surprised by the recent scientific evidence regarding hope.

The idea that positive stories can lead to hope and hope can lead to health is not new.

Reflecting on the wisdom of oral traditions and the role of stories to spur action, Schram writes, “We never know when a breath, a word, a story may be the vehicle that connects us to wisdom, healing, and reconciliation” (Schram, 2004, p. 77). When Schram was herself in the midst of a personally devastating loss, she found that by reading and rehearsing the ancient stories from the Hebrew Scriptures, hope was animated in her and she was reminded to “choose life” (2005, p. 104).

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Intentional Training for Narrative Resourcefulness

Programs that make use of stories have been developed to teach optimism skills to groups as disparate as grade school students and members of the military (Peterson, 2000,

Seligman, 2011). It is easy to understand that members of the military often face traumatic events. What is less clear is why some soldiers struggle with Post Traumatic

Stress Disorder (PTSD), while others experience post-traumatic growth. Believing that resilience made the difference for those who experienced personal growth after trauma, the army worked with experts to create a training module for resilience. The resulting resilience-training program includes an assignment in which trainees construct a narrative of appreciation and personal growth. Using positive stories to develop resilience is a communication skill; according to one of the designers, the applicability of such training goes beyond the military to businesses and organizations. Seligman (2011) writes,

“Optimism is the key” (P. 101). He also points out that the related competencies that result from such training—increased mental toughness, the honing of personal strengths and nurturing positive relationships – are relevant and useful across contexts (Seligman,

2011).

I would suggest that the applicability of such training does indeed go beyond the military and beyond businesses and organizations too. This training belongs anywhere there are people who might face trauma, like communication classrooms and medical schools, and anywhere people have faced trauma, such as cancer clinics and patient support groups. Physicians are not the only people who can contribute to a patient’s well- being; the training mentioned above is one possibility for self-help. Famous for increasing the survival rates of breast cancer sufferers, the support group or patient care group is another format for positive story-building. Many online melanoma support sites,

217 like other online patient support groups, provide an opportunity to share narratives. Such a forum provides patients a unique opportunity to offer support and insight, and, in so doing, to engage both the poster and the reader in a narrative (Keim-Malpass & Steeves,

2012).

As communication teachers we are storytellers, and in that capacity we can help students use story techniques to redefine roles and replace goals that are no longer working or accessible. We can practice constructing more hopeful narratives anytime a story is perceived as problem-saturated (Shapiro & Ross, 2002). We can equip students to use stories in multiple applications. Conducting these interviews and listening to the stories of patients, some of whom are college-aged, has reminded me of the need to help equip students to be prepared for the disruptions they may encounter in their lives and in the lives of others. Our students will eventually work in fields such as business, education, or law, and our students may care for patients or become patients. Assisting them to become competent communicators surely means helping them to gain narrative sensibilities, and become narratively resourceful.

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CHAPTER 8: CONCLUSIONS AND REFLECTIONS

“The purpose of the storyteller is not to tell you how to think, but to give you

questions to think upon.” (Sanderson, cited by Vanadia, 2013)

Elena Dorfman (1993) decided to write The C Word, in part because when she was diagnosed with cancer as a teenager she couldn’t find stories about how other teens were navigating their illnesses. In the introduction, she shares her experience of feeling isolated, her need as a seventeen year-old to understand how other seventeen year-olds might look without hair, to know how they handled the death of a hospital roommate, or how they managed the changes wrought by their illnesses. Later, remembering those feelings of being isolated and of needing to understand what was happening fueled her motivation for writing:

This book is an attempt to make sense of my illness by combining pictures and

personal experiences of young adults facing cancer today. They are working

through the normal difficulties of being teenagers, years made much more

complex by the onset of cancer. As each of these teenagers expressed, when you

are sick, it is hard not to feel the world is spinning by without you. (Dorfman,

1993, pp. 12-13).

For patients, family members or caretakers, stories from people who have experienced something similar can provide much needed light at the end of what can be a very long tunnel. Part of the reason our family agreed to be interviewed for Elena’s book was that we too knew the fear and frustration of not having enough information, of being without the comfort of guiding stories.

Cathy Poole also understands the need for stories. After feeling like she was largely on her own to navigate her illness, Cathy started a melanoma advocacy group.

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She has spent years sharing her story and connecting patients with information, resources, and each other so they can experience the support of shared stories.

This dissertation is a story about stories. Stories influence every area of our public and private lives. Stories are present in our homes, schools, businesses, even in our doctors’ offices, hospitals and legislative and regulatory agencies. Stories help us to shape our individual identities as well as our perceptions of families, peers and public figures. I have told some of those stories here, beginning with the stories of two powerful organizations, and ending with stories from individual women. These organizational and personal stories intersect in ways that none of the patients imagined prior to their diagnosis.

In this dissertation I have explored examples of competing meta-level organizational message-making particularly from the ITA and the AAD regarding tanning, skin cancer and melanoma. I also have examined their opposing assertions about the safety of tanning and claims about health risks and benefits. Additionally, I looked at how those organizations utilized their competing messages and strategies in their attempts to persuade and influence key audiences such as tanners and potential tanners, parents and policymakers.

Not surprisingly, organizations such as the AAD or ITA often influence the individual stories and views that are shared and vocalized by people who are affiliated with those organizations. According to the Indoor Tanning Association and similar entities, indoor tanning is not only safe it enhances health. Many individuals believe this is true, hope this is true, and are willing to convince others it’s true. Salon owners and operators repeat these organizational claims, often including a few claims of their own.

On the other side of the issue is the AAD. The American Academy of Dermatology,

220 along with dozens of other medical associations and agencies, refute the claims of the indoor tanning industry. Using these organizational narratives and combining them with stories from their own patients, physicians have developed meso-level narratives for use in advocacy.

Attempting to reduce the efficacy of their opponents’ arguments by undermining the credibility of physician-activists, indoor tanning industry representatives accuse dermatologists of being self-serving and of colluding with pharmaceutical and cosmetic manufacturers to scare the public for financial gain. Individuals with varying levels of power and influence share their stories about tanning. Stakeholders from all sides bring these stories into the political arena trying to convince policy-makers of the veracity of their arguments. Mediated in the press, reproduced online, and trickling down into individual conversations, the original truth claims have been accepted, rejected, contested, believed and ignored.

Most models of decision making include at least two parts: cognitions and evaluations. People decide what actions to take, or what behaviors to engage in or avoid, based on their thoughts and feelings. Where do the cognitions and evaluations regarding indoor tanning come from? Judging from my participants’ accounts, they come from cultural norms of attractiveness, from the modeled behavior of influential others, from personal experience, and from the meta-level stories provided by experts. I have examined some of those meta-level stories, following the story thread to meso-level stories and finally to the micro-level narratives of patients. For the patients profiled in this paper, the debate about whether tanning is healthy or dangerous has ceased to be theoretical.

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In the introduction I wrote that choosing to believe one story over another is consequential and that is certainly true for the melanoma patients profiled here. This narrative recounting began with the tanning industry claims that tanning was perfectly safe, and finished with the narratives of women dealing with melanoma due to tanning.

Our story’s progression matched the real life experience of women who started tanning with the belief that what they were doing was harmless. Unfortunately, that belief provided no protection. They were harmed. They found their immediate plans disrupted and their long-term plans placed in doubt. For each of these women cancer was the consequence they suffered for believing the wrong story, for believing that tanning was safe. Recounting the stories of their experiences with cancer, patients admitted recognizing the folly of their past choices, talked about coping with present realities that were sometimes painful, and shared the uncertainty they faced in the future. Each woman had to find new ways to break old habits and adopt new behaviors. Some changed the way they thought about themselves, and some changed the way they related with others.

All of them were left to create new stories in order to explain what had happened, and these resulting stories were about truth and consequences.

A Unique Contribution

Both scope and style make this dissertation a unique contribution to the current literature on narrative resourcefulness and the literature on indoor tanning. A story about stories, a qualitative approach that includes meta, meso, and micro-level narratives provides a sense of the broader context within which stories are told and retold, believed, countered, or ignored. This broad approach means that a variety of contexts are included; the narratives here range from the very personal to the very public. The individual stories offer insight into the peer pressure, denial, and dissonance experienced by those who

222 became habitual tanners, and their fight to break the habit. Stories about trust in the relationship between doctor and patient provide a positive example of medical communication. Descriptions by those who worked in salons provides a behind-the- scenes look at the techniques used to encourage customers to increase the amount of time spent tanning, and the false assurances that tanners are given regarding the safety of the tanning beds. Finally, this dissertation contributes to the current understanding of generative narrative by examining narrative resourcefulness as a means for identity change and empowerment.

Perhaps our academic scrutiny is at times too narrow, failing to take into account the fact that persuasive organizational messages are mediated in countless ways.

Information is filtered through layers of prior beliefs and attitudes, mitigating factors that are not always logical influence decisions and behaviors. In the case of tanning, as the debates rage about vitamin D, as legal cases over regulation and enforcement are being mounted, young women are tuning it all out and going to tanning parlors simply because they want to look tan. The fact that the tanners themselves probably have different motives doesn’t mean that these other efforts to reduce tanning are a waste because this is a battle on multiple fronts. But it is a reminder that personal decisions regarding health- related behaviors are complex. A big picture approach like this one can identify ways that stories, on multiple levels, through multiple iterations, can trickle down to be used or ignored by the individual decision maker.

Many scholars seek to better understand the communication dynamics within a medical context with the goal of improving the relationship between patients and providers. In the literature it is not difficult to find examples of unsatisfactory communication episodes that result in problematic relationships between patients and

223 care providers. Such episodes may leave patients feeling unheard and frustrated, and they may adversely affect patient compliance and treatment outcomes. Unfortunately, such was the case for a few of the patients I interviewed. Their early experiences with the physicians who diagnosed or treated their melanomas were neither positive nor trusting. I heard accounts from patients who felt alone and unheard, or who felt they had to fight their physicians in order to have their wishes respected. In each of those cases, there was a lack of trust. They didn’t trust that their doctor was there for them or didn’t trust that their physician would be thorough enough to protect them. Consequently, they didn’t follow their doctors’ treatment recommendations, and ultimately moved on to physicians who listened. These stories could be added to the multitude of stories chronicling problematic relationships that often exist between patients and healthcare providers. Less common in the literature are accounts from patients who are satisfied with their physicians. The stories from the patients and physicians I spoke with can serve as instructive and positive examples of patient and provider interaction.

In my interviews with patients, trusting their physicians was such an important topic that typically they brought it up first without prompting from me. The value of respectful positive relationships was a sentiment expressed to me by both patients and physicians. I heard from physicians who thought of patients as partners, relating to and caring for them as distinct individuals. I heard patients speak about how grateful they were for caring physicians, about their relief at finally feeling safe. Taken together, these provide a powerful testimony about the tangible good a positive, trusting, doctor-patient relationship can produce.

This study contributes to our understanding of the dialogic possibilities in the relationship between caregivers and care receivers. By including stories from both

224 physicians and patients, we gain insight into some of the issues germane to melanoma diagnosis and treatment. Hearing patients talk about their physicians made it clear that even in this context, the concept of truth and consequences is relevant. The patients who believed in the truthfulness of the stories being told by their physicians were more willing to comply by adopting healthy behaviors and adhering to treatment protocols. For these physicians who placed a high value on their role as educators, helping patients to navigate this new experience by explaining melanoma in terms of what has happened, what is happening and what will happen is key.

These physicians recognized that the general public has many misconceptions about melanoma and that patients need to know what to expect, so it falls to them as doctors to provide accurate information. A physician who supplies information, who assures patients of his or her availability, and who speaks to patients with positive regard, is perceived as supportive and trustworthy. When a trusted physician describes the future in positive, optimistic terms, it helps to shape her patients’ understanding of life after diagnosis. Given the increasing evidence that a maintaining a positive outlook is consequential to overall health, this contribution may be as important to patients as any behavioral intervention. Patients who can adopt a realistically optimistic outlook from their physicians and make it their own, can become hopeful. When that happens, hope may permeate their stories and color their vision of the future.

Limitations

A study of this kind has intrinsic limitations due to the methodological design, the time constraints during interviews, the number of participants, and the interpretations that

I have imposed on the subject matter. Whether by telling, re-telling, or co-telling, the stories of a handful of patients and physicians will not result in findings that are

225 reproducible, generalizable, or statistically significant. I make no claims that the experience of one melanoma patient is the same as the experience of another, or that the excerpts of conversations recorded here adequately summarize the experience of my interviewees. Frank (1993) reminds us that illness narratives “claim to speak only for themselves” (p. 49). Even then, because I have selected quotations and framed them in particular ways, the illness narratives presented here are best thought of as co- constructions (Boje, Luhman & Black, 1999).

When Elena was interviewing me, she met with me at home and at the hospital and she recorded my responses to her questions. As I have previously noted, some of my answers and the answers of other members of my family are excerpted in the book rather than reproduced in their entirety. Re-reading those words now, I find that the sentiments that I expressed with absolute certainty in those moments, in those settings, are not the answers I would give to those same questions today. They were true at the time and in that moment but my story and my family’s narrative have evolved since that time. Those stories and sentiments were a snapshot of our perspectives and experiences—caught during a particular moment in time and preserved in print. Conversations with Elena captured our truth at the time—our story told as we were living it. Just as in the case of the interviews captured here, I understand such conversations to be transient thoughts and feelings, expressed in response to what was a current situation, in the context of a particular social interaction. Such conversations, then and now are best understood as that

– simply conversations.

With the exception of Dr. Brod and Dr. Sullivan, each of whom I spoke with on multiple occasions, I visited with interviewees only one time. We usually met for approximately 60 to 90 minutes, and in hindsight I wish I had spent more time with each

226 person. Reading the interview transcripts, I found myself thinking it would be great if I could go back and ask more questions, clarify concepts or explore ideas. If I had it to do over again, I would have scheduled follow-up interviews to be conducted after my first perusal of the material. Having more time to spend with each individual and having the ability to follow up would have provided opportunities for greater clarity and depth. Of course, even if I had spent more time in conversation, or conducted follow-up interviews with each physician and patient, my attempts at identifying themes and rendering interpretations would still be more informed conjecture (Seligman & Kahana, 2009) than calculated certainty, and I present my work here as such.

I have attempted to capture conversational elements that offer readers a glimpse at the sense-making and identity-shaping storytelling I heard. In this process, I present these stories without theoretical artifice or overreaching elaboration. As Denzin and Lincoln remind us, “objective reality can never be captured” (1994, p. 2), and so I endeavor to do the storytellers justice in this paper by explaining my active participation in the framing and co-telling of their stories.

Another limitation is that I didn’t speak to any representatives from the tanning industry, instead relying on material that was available online. All of the online sites I used are available to the public and indeed, much of it is written expressly for the public.

I have been transparent about my personal feelings regarding tanning. Despite my own readily admitted bias against tanning, I have tried to select material that is representative of the pro-tanning position. In elucidating the position of the ITA and other pro-tanning entities, I have taken pains to accurately portray sponsoring organizations and companies.

It would be illuminating and instructive to have actual in-depth conversations with

227 individuals who are affiliated with the tanning industry, and I hope to have an opportunity to do so in the future.

Future Applications

Stories can be a call to action, and I hope that is the case with the stories I have told here. Research involving indoor tanning discourses and decision-making practices, particularly within the field of communication, is relatively new. Throughout the course of this research, several areas and topics arose that deserve further study. There is a tremendous need and an opportunity for communication scholars to contribute in a meaningful way. There also are significant opportunities for collaboration with practitioners and scholars from other disciplines in order to design and implement effective strategies for tanning reduction. A broad range of expertise, cross-disciplinary partnerships and collaboration with practitioners outside academia will be essential in order to change the current norms and narratives that encourage indoor tanning.

One of the most disturbing realizations I had while listening to these patients’ stories was that high school and college-aged girls are potentially being exploited while working in tanning salons all over this country. It should have come as no surprise; of course I knew that young women work in tanning salons. But before hearing Diana’s story, I had never considered the pressure many of these girls are under to maintain a tanned appearance. Curious about the implication, I did some reading on an online forum for salon owners. It wasn’t difficult to find relevant discussions among owners about the best way to ensure their employees have a tanned appearance. One owner, signed in as kpkp, and seeking advice from other salon owners, posted the following question about a recalcitrant employee:

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As part of our employee contract it states that the employee will tan as agreed. I

had an employee that all of the sudden says they do not want to tan and that an

employer can NOT make them do something with their body they do not want to

do. I told the employee that I can't make them however I can require them to tan

to be employed (Tan Today, 2011).

I could list dozens of similar posts from owners who responded, saying that they also require their employees to tan. Some go so far as to mandate the number of times each week employees must use the tanning beds. While some salon owners allow employees to use a spray tan in lieu of the tanning beds, not all salons are equipped with spray units. Another salon owner with the screen name cocobuns wrote, “I require mine to tan for two reasons, they have to know how the beds and tanning process work and they must sport a tan to represent our salon” (Tan Today, 2011).

How many young women are encouraged or required to tan in order to keep their jobs or increase sales? In addition to a tanning requirement, I suspect a fair number are also expected to share inaccurate or misleading information with customers regarding the health risks and benefits of tanning. Another tanning forum contained the following, illustrative “confession” posted by a salon employee who, for obvious reasons, chose to remain anonymous:

A timid new customer walks into my large tanning salon one hot summer

morning. She is looking into opening a membership, but has some serious

questions about how safe tanning actually is. Of course, I could tell her the

truth…That regular tanning increases her chances of skin cancer by 75%, that the

UVB rays in our level four bed equal the damage she would get after spending 10

hours in direct sunlight, and that she will begin to show more hard wrinkles, lines

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and age spots after tanning than she would if she turned around and left the salon

forever.

But of course, if I said any of that I would lose my job. So, I tell her what

I have been trained to say…That tanning is perfectly SAFE! Safer than staying

out in the sun, and that sunburn actually causes skin cancer, and tanning decreases

the risk of burning, therefore decreasing the risk of skin cancer (Sultan, n.d).

Thus, this dissertation exposes a problem that previously may have gone unnoticed—the health dangers tanning salon employees are routinely exposed to. I found no discussion of this issue in the literature. Perhaps strict regulations are needed to protect these workers? Legislators may not have considered the fact that young tanning salon employees need protection from exploitation by employers who pressure them to mislead customers or to participate in an unsafe activity. Imagine the outrage if 16-18 year-old sales clerks were being encouraged (or forced) to smoke in order to increase cigarette sales in the stores where they worked.

Those of us who work at colleges and universities should be aware of marketing aimed at college students. College neighborhoods typically have very high densities of tanning salons, and too often college-affiliated housing offers the inducement of free tanning. Again, imagine college housing that provided students with free cartons of cigarettes. Tanning, like smoking, is ranked by the International Agency for Research on

Cancer (IRAC) as “carcinogenic;” perhaps using analogies to smoking will help people to understand the gravity of the risk.

It is not difficult to imagine ways to increase awareness about tanning dangers on college campuses. Tanning salons target college students in their advertising, so it is fitting to use college students to design anti-tanning messaging. Campaigns against

230 indoor tanning should be included in the campus-wide efforts that are routinely undertaken to encourage students to avoid dangerous practices and promote health- preserving behaviors. Classroom projects and campaigns to reduce tanning could involve students and faculty from multiple academic areas in scholarship and service through such activities as designing messaging, raising awareness or mentoring younger students.

The prom pledge campaign that was successful in Philadelphia could be sponsored by a sorority, and Administrators could insist that no university-affiliated housing offers free tanning (Appendix G).

Certainly, I hope that communication scholars will continue to explore ways to contribute to the effort to reduce indoor tanning by partnering with those who are currently working to effectively reduce the social, emotional, physical, and societal costs and consequences associated with tanning behavior. Even without a specific focus on the problem of indoor tanning, scholars within several communication sub-fields including: interpersonal, organizational, mass media, health, intercultural, and political communication are conducting research that is relevant, and can be applied by others to the issue of indoor tanning. The examination of rhetorical approaches, analysis of message framing and message delivery in political advocacy, assessments of intervention design and outcomes, and considerations of personal characteristics that moderate intervention efforts can inform the work. (Turrisi, Hillhouse, Mallot, Stapelton &

Robinson, 2012).

Those who study media and the transmission and enactment of gender roles can provide insight into the relationship between gendered messages, perceptions of beauty, and high-risk behaviors. Scholarship regarding identity management, family and peer influence on behavior, and perceived social norms help us to understand how one’s

231 decision to tan may be construed as an act of social participation. Health and narrative scholars who examine physician/patient interactions provide insights on the role of coping, social support, health, and empowerment. Intercultural scholars can provide increased understanding of varying cultural perceptions of tanning that inform culture- specific intervention efforts for European and non-European countries where tanning is also a prevalent problem (Hay & Lipsky, 2012). With a theoretical grounding in the art and science of message creation and an ever-growing body of literature related to the rhetoric of health behaviors, communication scholarship can inform such work.

Communication scholars seeking more applied engagement can partner with students, working locally to counteract the marketing messages aimed at their colleges. They also can collaborate with physicians, patients, and other stakeholders to enact legislative solutions, design interventions, reduce tanning behavior, and ultimately, save lives.

Training for Narrative Resourcefulness, Reprise

In so many ways stories have played a critical and defining role in my life. In my roles as a director, mediator, coach, and educator, I have taught others to be mindful of stories, and encouraged them to tailor their stories to fit the needs of their audience. As the mother of a cancer patient I have felt the need for stories in healthcare settings, stories that would help me to get through the bad days and envision good days in the future.

During those times, healthcare providers had leading roles in our family stories, sometimes as heroes, sometimes not, but the need to communicate with them in productive ways had a shaping effect on me.

Answering Elena’s questions sometimes involved emotional labor for our family as we reflected on difficult, frightening and frustrating times. But there also were times when in our reflecting we realized that we had grown closer; we acknowledged our

232 blessings and nurtured our hopes for the future. I have experienced the catharsis of telling my stories and gained empathy by listening to others’ stories. I know that the very act of sharing your story with someone, particularly someone who is validating, can be a positive experience. Having an audience, even an audience of one can be a powerful means of healing and connection.

I am hopeful that the growing awareness of the power of narrative and the value of optimism will continue to shape our approach to teaching communication. Researchers in many academic disciplines have joined communication scholars in recognizing the value of stories, especially optimism-producing stories, and cross-disciplinary collaboration will undoubtedly continue to produce valuable insights regarding the crafting and deploying of positive, generative stories.

The idea that physicians can impact a patient’s outlook on the future is a simple but powerful reminder of the consequences of stories. Generative optimism that is a function of hopeful imagination is more than thinking good thoughts; and different from magical thinking or pie-in-the-sky naiveté, it is conscious, appreciative and intentional.

Optimism is related to the explanations and attributions used to account for negative events or disruptions (Seligman, 2011); and optimism also is related to one’s ability to make plans and achieve goals (Snyder, 1994). Combining insights from positive psychology and positive health (Seligman, 2008), as well as appreciative inquiry, narrative medicine and other strength/story perspectives will help to shed light on the phenomena of the creative power of hopeful stories.

Lessons from disruption.

I began this project expecting to hear about lives that were disrupted due to cancer. I understood this kind of disruption. I took my daughter to the pediatrician

233 because she had a fever and swollen glands; it looked like the mumps. By the next evening she and I were in another state, waiting to be admitted to the oncology ward of a children’s hospital. We left town in such a hurry there wasn’t even time to see the younger three children who were still at school. With our experience of disruption coloring my expectations, I was prepared to hear about the medical procedures and hospitalizations that literally take people out of their ‘normal’ lives and thrust them into a strange new world. This world produces the worst kind of culture shock – one where a frightening diagnosis and physical pain are exacerbated by strangers using foreign- sounding terminology, upsetting your schedules, and forcing you to participate in unknown customs.

I have already explained that the stories I heard were not the stories I was expecting, but they were stories of disruption nonetheless. They were stories about the disruption of self. Cathy was pregnant, a health journalist and an advocate for breast- feeding who relieved stress with exercise and who believed that the key to making good choices was being informed. When she was diagnosed, more than two decades ago, she had to face treatment decisions without any information. She was unable to exercise because of her surgery, and she was told to bottle feed her baby once it was born. In addition to a lack of information and support from medical care providers, the lack of empathy and understanding were an added challenge. June was happy with her job at the tanning salon; she enjoyed helping customers and found her role as a kind of surrogate mom to her younger co-workers especially fulfilling. At first she tried not to let her cancer interfere with her job, but it was impossible to keep the fact that tanning was the cause of her cancer from intruding into every part of her life. It was difficult for her to balance her enjoyment of the social aspects of work, as well as her financial need for

234 employment, with her increasing awareness and guilt about the danger she was routinely subjecting customers to.

JoAnn thought of herself as ‘outdoorsy’ and athletic. She was a sun worshipper who went to the tanning parlor for a base tan that she thought would allow her to stay outdoors in the sun even longer. Nothing kept her inside on sunny days, until she got melanoma. Kristi liked to look good, stay in shape, and save money while she was training to become a nurse. So she appreciated the fact that at her apartment complex and at the gym where she and husband worked out, free tanning was available. Later, when she was diagnosed, she had to decide whether to trust her instincts as a nurse or to accept her doctor’s opinion that she was fine. Surprised and embarrassed by the scars caused by additional surgery, Kristi covered up by wrapping an ace bandage around her leg before going in public.

Liz had learned a lot during her first year working at the dermatology clinic. She now understood how dangerous indoor tanning could be and she was glad she had stopped a few years before. Finally after working with dermatologists for a year, she got up the nerve for a skin check. On that day she was diagnosed and became a patient of the clinic where she worked. At first, Diana tried to believe that continuing to tan would be safe, that her diagnosis didn’t require her to make any drastic changes. Eventually, she had to face her tanning addiction and quit her job. Stephanie had so many doctors’ appointments and was so often recovering from medical procedures that involved sutures that she was forced to drop out of her college program and give up her dream of becoming a veterinary technician. Sheila was ready to enjoy her first year away at college, until her diagnosis required her to commute home for treatments. She then put the top up on her convertible and contemplated death.

235

These are stories of disruptions and changed identities. In countless ways life changed for each of these women. Some of the changes happened immediately, others over time. Sometimes changes that were unwelcome seemed very negative like the need to drop out of school; those really felt like a disruption. Sometimes the changes involved letting go of personal goals such as being involved in athletics or becoming a veterinary technician, or ideals—being tanned, being outside in the sun, being carefree. Often, changes were positive—Liz is more understanding and empathetic with patients at the clinic because she has been in their place. Diana believes she is a better mother, and

Sheila believes she is a better teacher, because of the changes brought about through their experiences with illness. As much as one might long for an afternoon sunbathing on the beach, no one is willing to take the risk any more. These are women who intend to control what is controllable, who take steps every day to minimize their risk of recurrence. Such agency is the evidence of shifting self-narratives.

For these melanoma survivors, working to adjust to the disruption of illness and the disruption of self has been an ongoing process, a journey with ups and downs. At this moment each is relatively healthy and reasonably optimistic about staying that way. June, who has had over 100 cancers removed, expects that her doctor will continue to find and remove malignancies. For others it is almost certain that the future holds many ‘just-in- case’ procedures to remove suspicious moles and lesions. They accept their status as permanent patients, grateful to have caring physicians. As a consequence of her illness, each woman has faced disruptions, and permanent patient-hood is simply one more consequence.

After recovering from a traumatic episode of illness, Mark Leeman vowed never to allow himself to become as disconnected from the physician who is responsible for his

236 primary care as he was prior to his illness. He writes, “That is the one place I found where the relational side of medicine is given a place within the larger discourses of science, profits and efficiency” (Leeman, 2013, p. 184). Leeman had a doctor who knew him and cared for him, and that made all the difference. The women I spoke with would understand Leeman’s sentiment. The relational side of medicine has mattered a great deal to them too. How different each of these patient stories might have been had it not been for relational medicine—the skill, care and concern of their physicians. “When the body and self is at stake, patients need attention to both the corporeal nature of their abnormalities and their personhood” (Harter, Quinlan & Ruhl, 2013, p. 33).

According to Frank (1993), one reason for chronicling the self-change brought about by illness is the “pure pleasure of honoring the voices of those narratives” (p. 49).

It has been my pleasure and privilege to listen to and learn from every patient and physician who gifted me their time and their stories. This work would not have been possible without them, and I am immensely grateful to each of them.

In her introduction to The C Word, Elena acknowledges how personally impactful writing the book had been. Likewise, this dissertation is close to my heart; stories, particularly stories of cancer have shaped me and brought me to the place I stand now. It is my hope that I not only can continue to facilitate the sharing of stories, but also to help equip others to use narrative in a way that improves their lives and the lives of others. It has been an honor to first hear and now share these stories. I fervently believe we can make a positive difference by building upon the ideas shared here. But if this project only serves to provide these individual patients and physicians an opportunity to tell their stories, to be heard, affirmed and appreciated; it was well worth the effort.

237

In closing, I share the sentiment voiced by Dorfman:

I do not regret my intimacy with illness. It has brought me far beyond the place I

was before I knew this disease. This piece of work is my gift in return…I’m

certain no other endeavor will be as personal or as close to my heart. (1993 p.13)

238

REFERENCES

Abell, J., Stokoe, E. H., & Billig, M. (2000). Narrative and the discursive (re)construction

of events. In M. Andrews, S. Day Sclater, C. Squire & A. Treacher (Eds.) Lines of

Narrative: Psychosocial Perspectives. New York: Routledge, 180-192.

American Academy of Dermatology Association, (a). AADA Advocacy. Retrieved from

http://www.aad.org/members/aada-advocacy

American Academy of Dermatology, (2010). Federal and state regulations on indoor

tanning support scientific evidence that indoor tanning is not safe. Retrieved from

http://www.aad.org/stories-and-news/news-releases/federal-and-state-regulations-

on-indoor-tanning-support-scientific-evidence-that-indoor-tanning- is-not-safe

American Academy of Dermatology, (2011). Academy issues updated position statement

on vitamin D. Retrieved from http://www.aad.org/stories-and-news/news-

releases/academy-issues-updated-position-statement-on-vitamin-d

American Academy of Dermatology, (2012). Tanning industry exposed: Evidence

demonstrates link between indoor tanning and skin cancer, dermatologists

committed to educating public on risks. Retrieved from

http://www.aad.org/stories-and-news/news-releases/tanning-industry-exposed-

evidence-demonstrates-link-between-indoor-tanning-and-skin-cancer-

dermatologists-committed-to-educating-public-on-risks

American Academy of Dermatology, (2013). What is a Dermatologist? Retrieved from

http://www.aad.org/dermatology-a-to-z/about-dermatology/what-is-a-

dermatologist

239

Asbring, P. (2001). Chronic illness–a disruption in life: identity-transformation among

women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced

Nursing, 34(3), 312–319.

Balk, S. J., Fisher, D. E., & Geller, A. C. (2013). Teens and indoor tanning: A cancer

prevention opportunity for pediatricians. American Academy of Pediatrics.

Retrieved from

http://pediatrics.aappublications.org/content/early/2013/03/12/peds.2012-2404

doi: 10. 1542.

Bamberg, M. (2005). Narrative discourse and identities. Narratology beyond literary

criticism: Mediality Disciplinarity. Berlin: Walter de Gruyter, 213-237.

Banerjee, S. C., Hay, J. L., & Greene, K. (2013). Cognitive rationalizations for tanning-

bed use: A preliminary exploration. American Journal of Health Behavior, 37(5),

577–586. doi:10.5993/AJHB.37.5.1.

Bannerjee, S. C., Campo, S., & Greene, K. (2008). Fact or wishful thinking? Biased

expectations in "I look better when I'm tanned" Journal of Health Behavior, 32,

243-252.

Barge, K. J., & Shockley-Zalabak, P. (2008). Engaged scholarship and the creation of

useful organizational knowledge. Journal of Applied Communication Research

36(3), 251-265.

Beck, C. S. (1994). How can I tell you this?: The interactional nature of narratives.

Journal of the Northwest Communication Association 22, 5-26.

Beckman, S. L., & Barry, M. (2009). Design and innovation through storytelling.

International Journal of Innovation Science, 1(4), 151-160.

240

Bochner, A., P., & Ellis, C., (1999). Which way to turn? Journal of Contemporary

Ethnography 28(5), 485-499.

Bochner, Arthur, P. (2001). Narrative’s virtues. Qualitative Inquiry 7(2), 131-157.

Boehm, E. (2003). PA may ban teens from tanning salons. Hellertown-Lower Saucon

Patch. Retrieved November 9, 2013, retrieved from

http://hellertown.patch.com/groups/politics-and-elections/p/pa-may-ban-teens-

from-tanning-salons

Brooks, P. (2006). Narrative transactions-Does the law need a narratology. Yale Journal

of Law & the Humanities, 18(1), 1-29.

Brown, A. D., Gabriel, Y., & Gherardi, S. (2009). Storytelling and Change: An

Unfolding Story. Organization, 16(3), 323–333. doi:10.1177/1350508409102298.

Brown, A.D., Stacey, P., & Nandhakumar, J. (2008). Making sense of sensemaking

narratives. Human Relations 61(8): 1035-1062.

Bruner, J. (2002a). Making stories: Law, literature, life. Cambridge, MA: Harvard

University Press.

Bruner, J. (2002b) Narratives of human plight: A conversation with Jerome Bruner. In

Charon, R., & Montello, M. (Eds.). Stories matter: The role of narrative in

medical ethics. Routledge, 3-9.

Burke, P. J., & Reitzes, D. C. (1981). The link between role identity and role

performance. Social Psychology Quarterly, 44(2), 83-92.

Burkhart, C. (2011). What’s on the horizon in tanning bed legislation? It depends on you!

Cosmetic Dermatology 24(12), 560-564.

Cafri, G., Thompson, J. K., Roehrig, M., van den Berg, P., Jacobsen, P. B., & Stark, S.

(2006). An investigation of appearance motives for tanning: The development and

241

evaluation of the Physical Appearance Reasons for Tanning Scale (PARTS) and

its relation to sunbathing and indoor tanning intentions. www.science direct.com.

Body Image, 3. Cambridge, UK: Cambridge University Press, 274-305.

Cancer.org (n.d.). Retrieved from www.cancer.org

Cantor, N. (1990). From Thought to Behavior: "Having" and "Doing" in the Study of

Personality and Cognition. American Psychologist, 45(6), 735-750.

Carol, R. (2011). Banning the tan gains momentum. Dermatology World. Retrieved from

http://www.aad.org/dw/monthly/2011/may/banning-the-tan-gains-

momentum#page6

Carter, K. (1993). The place of story in the study of teaching and teacher education.

Educational Researcher, 22(1), 5–18.

Carter-Black, J. (2007). Teaching cultural competence: An innovative strategy grounded

in the universality of storytelling as depicted in African and African American

storytelling traditions. Journal of Social Work Education, 43(1), 31–50.

Charland, M. (1987). Constitutive rhetoric: The case of the Peuple Quebecois. The

Quarterly Journal of Speech 73(2), 133-150.

Charmaz, K. (1994). Discoveries of self in chronic illness. In Doing Everyday Life:

Ethnography as Human Lived Experience, M. L. Dietz, R. Prus & W. Shaffir

(eds.) Mississauga, Ontarion: Copp Clark Longman. 226-242.

Charmaz, K. (1995). The body, identity, and self. The Sociological Quarterly, 36(4),

657–680.

Charmaz, K. (2009). Stories and silences: Disclosures and self in chronic illness. In Dale

E. Brashers & Daena Goldsmith (Eds.) Managing health and illness. New York:

Routledge, 240-270.

242

Charon, R. (2001). What narrative competence is for. The American Journal of Bioethics

1(1) 62-63.

Charon, R. (2002). Time and ethics. In R. Charon, R., & M. Montello (Eds.) Stories

matter: The role of narrative in medical ethics. New York: Routledge, 59-68.

Charon, R. (2009). Narrative medicine: A model for empathy, reflection, profession and

trust. Journal of the American Medical Association 286(15), 1897-1902.

Cheney, G. (2007). Organizational communication comes out. Management Quarterly

Journal 21(1), 80-91.

Cole, C., Chase, S., Couch, O., & Clark, M. (2011) Research methodologies and

professional practice: Considerations and practicalities. The Electronic Journal of

Business Research Methods. 9(2), 141-152.

Connolly, S. (2012). AADA urges policymakers to act on U.S. House and Energy &

Commerce Committee’s investigation of false claims made by indoor tanning

salons, adopt federal legislation to protect young people. Retrieved from

http://www.aad.org/stories-and-news/news-releases/aada-urges-policymakers-to-

act-on-us-house-energy-commerce-committee

Cook, G. (2011). How to improve your life with “story editing”: Timothy Wilson gives a

grand tour of the science of psychological change. Scientific American. Retrieved

from http://www.scientificamerican.com/article/how-to-improve-your-life-with-

story-editing/

Coulehan, J. (2003). Metaphor and medicine: narrative in clinical practice. The Yale

Journal of Biology and Medicine, 76(2), 87-95.

243

Craib, I. (2000). Narratives as bad faith. In M. Andrews, S. Day Sclater, C. Squire & A.

Treacher (Eds.) Lines of Narrative: Psychosocial Perspectives. New York:

Routledge, 64-75.

Creighton, J. (2002). Teens ignoring health risks of obtaining the 'perfect tan'. The

Nation's Health, 32(6), 34.

Crites, S. (1986). Storytime: Recollecting the past and future. In Sarbin, T. (Ed.),

Narrative Psychology: The Storied Nature of Human Conduct. New York:

Praeger.

Cunliffe, A. L., Luhman, J. T., & Boje, D. M. (2004). Narrative temporality: Implications

for organizational research. Organization Studies 25(2) 261-286.

Czarniawska, B. (2011). Narrating organization studies. Narrative Inquiry, 21(2), 337–

344. doi:10.1075/ni.21.2.12cza.

Davison, K. P., Pennebaker, J. W., & Dickerson, S. S. (2000). Who talks? The social

psychology of illness support groups. American Psychologist, 55(2), 205-217.

Delgado, R. (1989). Storytelling for oppositionists and others. Michigan Law Review,

2411. 229-240.

Dellaville, R. P., Parker, E. R., Cersonsky, N., Hester, E. J., Hemme, B., Burkhardt, D.

L., Chen, A. K., & Shilling, L. M., (2003). Youth Access Laws. Archives of

Dermatology 1(39), 443-448.

Denzin, N. (2000). Forward: Narrative’s Moment. In M. Andrews, S. Day Sclater, C.

Squire & A. Treacher (Eds.) Lines of Narrative: Psychosocial Perspectives. New

York: Routledge, x-xiii.

244

Denzin, N. K., & Lincoln, Y. S. (1994). Introduction: Entering the field of qualitative

research. In N. K. Denzin and Y. S. Lincoln (Eds.), Handbook of qualitative

research, Thousand Oaks, CA: Sage, 1-17.

DeSantis, A. D. (2003). A couple of white guys sitting around talking: The collective

rationalization of cigar smokers. Journal of Contemporary Ethnography, 32(4),

432–466.

Doheny, K. (n.d.). Tanning myths: What’s true, what’s hype? Retrieved from

http://www.webmd.com/beauty/sun/tanning-myths-whats-true-whats-hype

Dorfman, E. (1993). The C Word: Teenagers and their families living with cancer.

Portland, OR: NewSage Press.

Driver, M. (2001). Fostering creativity in business education: Developing creative

classroom environments to provide students with critical workplace

competencies. The Journal of Education for Business, 77(1), 28–33.

Duke Health (n.d.) Retrieved from

http://www.dukehealth.org/health_library/health_articles/goingdeepsurvivingmela

noma

Eisenberger, R., Fasolo, P., & Davis-LaMastro, V. (1990). Perceived organizational

support and employee diligence, commitment, and innovation. Journal of Applied

Psychology, 75(1), 51.

El Ghissassi, F., Baan, R., Straif, K., Grosse, Y., Secretan, B., Bouvard, V., & Cogliano,

V. (2009). Special report: policy. A review of human carcinogens—part D:

radiation. The Lancet, 10(8):751-752.

245

Ellingson, Laura, L. (2011). Analysis and representation across the continuum. The Sage

Handbook of Qualitative Research (4th ed.). Denzin, N. K., & Lincoln, Y. S.

(Eds.) Thousand Oaks: Sage 595-610.

Ellis, C., & Bochner, A. P. (2000). Autoethnography, personal narrative, reflexivity:

Researcher as subject. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of

Qualitative Research, 2nd ed. Thousand Oaks, CA: Sage. 733-768.

Ewick, P., & Silbey, S. S. (1995). Subversive stories and hegemonic tales: Toward a

sociology of narrative. Law & Society Review, 29(2), 197-226.

Fernandez, E. (2012). Tanning beds linked to non-melanoma skin cancer. University of

California, San Francisco. Retrieved from

http://www.ucsf.edu/news/2012/10/12846/tanning-beds-linked-non-melanoma-

skin-cancer

Fisher, W. R. (1984). Narration as a human communication paradigm: The case of public

moral argument. Communication Monographs, 51(1), 1-22.

Fisher, W. R. (1984). Narration as a human communication paradigm: the case of public

moral argument. Communication Monographs, 51, 1-22.

Fisher, W. R. (1987). Human communication as narration: Toward a philosophy of

reason, value, and action. Columbia, S. C.: University of South Carolina Press.

Frank, A. W. (1993). The rhetoric of self-change: Illness experience as Narrative. The

Sociological Quarterly 34(1). 39-52.

Frank, A. W. (1995). The wounded storyteller: Body, illness and ethics. Chicago:

University of Chicago Press.

Frank, A. W. (2005). What is dialogical research, and why should we do it? Qualitative

Health Research 15(7) 964-974.

246

Frank, A. W. (2008). Why study people’s stories? The dialogical ethics of narrative

analysis. International Journal of Qualitative Methods, 1(1), 109-117.

Frank, A. W. (2009). Why I wrote The Wounded Storyteller: A recollection of life and

ethics. Clinical Ethics 4, 106-108.

Frank, A. W. (2010). In defense of narrative exceptionalism. Foundation for the

Sociology of Health & Illness, 665-667.

Fredrickson, B. L. (2000). Cultivating positive emotions to optimize health and well-

being. Prevention & Treatment, 3, 1-25.

Freeman, M. (2001). From substance to story: Narrative, identity, and the reconstruction

of the self. In J. Brockmeier & D. Carbaugh (Eds.), Narrative and identity:

Studies in autobiography, self and culture, Amsterdam: John Benjamins, 283-298.

Freeman, M. (2010). Hindsight: The Promise and Peril of Looking Backward. New York:

Oxford University Press.

French, R. R. (1996). Narrative, authority, and law. Law & Society Review, 30(2), 417-

435.

Frey, L. R. (2009). What difference more difference-making communication scholarship

might make: Making a difference from and through communication research.

Journal of Applied Communication Research, 37(2), 205-214.

Gergen, M. M., & Gergen, K. J. (2006). Narratives in action. Narrative Inquiry, 16(1),

112–121.

Goli, F., Scheidt C.E., Gholamrezaei, A., & Farzanegan, M. (2014). The role of locus of

control and attributional style in coping strategies and quality of life among

Iranian breast cancer and colorectal cancer patients: A pilot study. International

Journal of Body Mind and Culture, 1(1): 65-72.

247

Grant, W. (2009). A critical review of Vitamin D and cancer: A report of the IARC

Working Group on vitamin D. Dermato-Endocrinology; 1(1), 25 - 33; PMID:

20046585; http://dx.doi.org/10.4161/derm.1.1.7729

Gray, J. B. (2009). The power of storytelling: Using narrative in the healthcare context.

Journal of Communication in Healthcare 2(3), 258-273.

Green, M. C. (2006). Narratives and cancer communication. Journal of Communication

56, S163-S183.

Green, M. C., & Brock, T. C. (2000). The role of transportation in the persuasiveness of

public narratives. Journal of personality and social psychology, 79(5), 701.

Greene, K., & Brinn, L. S. (2003). Messages influencing college women’s tanning bed

use: Statistical versus narrative evidence format and a self-assessment to increase

perceived susceptibility. Journal of health communication, 8(5), 443–461.

Greene, K., Campo, S., & Bannerjee, S. C. (2010). Comparing normative, anecdotal and

statistical risk evidence to discourage indoor tanning bed use. Communication

Quarterly 58(2), pp. 111-132.

Greenhalgh, T., & Hurwitz, B. (1999). Why study narrative? BMJ: British Medical

Journal, 318(7175), 48.

Groopman, J. (2004). The anatomy of hope: How people prevail in the face of illness.

New York: Random House.

Gubrium, J. E., & Holstein, J. A. (1997). The new language of qualitative method. New

York: Oxford University Press.

Harmon-Jones, E. (2002). A cognitive dissonance theory perspective on persuasion. The

Persuasion Handbook: Developments in Theory and Practice. Dillard, J. P., &

Pfau, M. W. (Eds.) Thousand Oaks, CA: Sage 99-116.

248

Harter, L. M. (2009). Narratives as Dialogic, Contested, and Aesthetic Performances.

Journal Of Applied Communication Research, 37(2), 140-150.

Harter, L. M. (2013). The poetics and politics of storytelling in health contexts. In Harter,

L. M., & Associates, Imagining New Normals: A Narrative Framework for

Health Communication. Dubuque, IA: Kendall Hunt, 3-27.

Harter, L. M., & Bochner, A. P. (2009). Healing Through Stories: A Special Issue on

Narrative Medicine. Journal of Applied Communication Research, 37(2), 113–

117. doi:10.1080/00909880902792271.

Harter, L., & Rawlins, W. (2011). The worlding of possibilities in a collaborative art

studio: Organizing embodied differences with aesthetic and dialogic sensibilities.

In Reframing difference in organizational communication studies: Research,

pedagogy, practice. 267-291. Thousand Oaks, CA: SAGE Publications.

Hawaleshka, D., & Righton, B. (2005). Cancer be damned, kids wanna tan. Maclean's,

118(26), 38-43.

Heckman, C., Egleston, B., Wilson, D., & Ingersoll, K. (2008). A preliminary

investigation of the predictors of tanning dependence. American Journal of

Health Behavior, 32(5), 451-464.

Helmer, S. M., Kramer, A., & Mikolajczyk, R. T. (2012). Health-related locus of control

and health behavior among university students in North Rhine Westphalia,

Germany. BioMed Central research notes, 5(703), 1-8.

Hillhouse, J., & Turissi, R. (2012). Motivations for indoor tanning: Theoretical models.

In C. J. Heckman & S. L. Manne (Eds.) Shedding light on indoor tanning. New

York: Springer, 69-86.

249

Hinze, S. W. (1999). Gender and the body of medicine or at least some body parts:

(Re)constructing the prestige hierarchy of medical specialties. The Sociological

Quarterly 40(2). 271-239.

Hirsch, G., & Robertson, B. (2005). Stories that inspire action. On Your Feet white paper,

1-7.

Hodges, K., & Winstanley, S. (2012). Effects of Optimism, Social Support, Fighting

Spirit, Cancer Worry and Internal Health Locus of Control on Positive Affect in

Cancer Survivors: A Path Analysis. Stress and Health, 28(5), 408–415.

doi:10.1002/smi.2471.

Hoerster, K. D., Mayer, J. A., Woodruff, S. I., Malcarne, V., Roesch, S. C., & Clapp, E.

(2007). The influence of parents and peers on tanning Behavior: Findings from a

multi-city sample. Journal of the American Academy of Dermatology, 57(6), 990-

997.

Hoffman, J. (2008). Bernard Ackerman, 72, dies; Expert at skin diagnosis. Retrieved

from http://www.nytimes.com/2008/12/11/health/11ackerman.html

Holick, M., & Tangpricha, V. (2005). Reply to M.A. Weinstock and D. Lasovitch.

American Journal of Clinical Nutrition 82(3), 707-708. Retrieved from

http://ajcn.nutrition.org/content/82/3/707.2.short

Horton-Salway, M. (2001). Narrative identities and the management of personal

accountability in talk about ME: A discursive psychology approach to illness

narrative. Journal of Health Psychology, 6(2), 247-259.

doi:10.1177/135910530100600210.

Horton-Salway, M. (2001). Narrative identities and the management of personal

accountability in talk about ME: A discursive psychology approach to illness

250

narrative. Journal of Health Psychology, 6(2), 247-259.

doi:10.1177/135910530100600210.

Huber, B. (2012). Burned by health warnings, defiant tanning industry assails doctors,

“sun scare” conspiracy. FairWarning. Retrieved November 10, 2013, from

http://www.fairwarning.org/2012/08/burned-by-health-warnings-defiant-tanning-

industry-assails-doctors-sun-scare-conspiracy/

Indoor Tanning Association, (2011). Indoor Tanning Association’s comments on the

American Academy of Pediatrics policy statement. Retrieved from

http://c.ymcdn.com/sites/www.theita.com/resource/resmgr/press_releases/aap_stat

ement.pdf?hhSearchTerms=AAP

Indoor Tanning Association, (a) FAQs Retrieved from

http://www.theita.com/?page=FAQs#roots

Indoor Tanning Association, (b). Promoting responsible sun care and sun burn

prevention. Retrieved from http://www.theita.com/

Indoor Tanning Association, (c). FAQs. What is the tanning industry’s position on UV

light? Retrieved from http://www.theita.com/?page=FAQs#UVlight

Indoor Tanning Association, (d). FAQs. What is the best way to help the body produce

the activated form of vitamin D? Retrieved from

http://www.theita.com/?page=FAQs#vitaminD

Indoor Tanning Association, (e). Government Affairs. Retrieved from

http://www.theita.com/?Government_Affairs

Indoor Tanning Association, (f). Political Action Committee. Retrieved from

http://www.theita.com/?PAC

251

Indoor Tanning Association, (g). State Legislation 2013. Retrieved from

http://www.theita.com/?State_Legislation

Indoor Tanning Association, (h). News and Press, Quick Links. Retrieved from

http://www.theita.com/news/

Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2009). Psychosocial adjustment to

multiple sclerosis: Exploration of identity redefinition. Disability and

Rehabilitation, 31(8), 599-606.

Island Sun Tanning, (n.d.) Retrieved from http://www.islandsun.org/tanning-info.php

Kadaba, (2005). Retrieved from http://articles.philly.com/2005-03-

24/news/25421402_1_tanning-salon-tanning-industry-tanning-bed

Kamradt, M., Myrick, J., & Schmidt, A., (2012). Protecting minors from the dangers of

tanning beds: A communication plan to persuade legislators to support the Youth

Cancer Prevention Act. NCA conference presentation, Orlando Florida, 2012.

Karmasek, J. M. (2013). Texas AG resolves health claims, marketing issues with tanning

salon. Legal News Line Journal. Retrieved from

http://legalnewsline.com/news/240135-texas-ag-resolves-health-claims-

marketing-issues-with-tanning-salon

Kirby, A. P., (1991). Narrative and the self. Bloomington, IN: Indiana University Press.

Knight, J. M., Kirincich, A. N., Farmer, E. R., & Hood, A. F. (2002). Awareness of the

risks of tanning lamps does not influence behavior among college students.

Archives of Dermatology, 138(10), 1311-1315.

Lamont, M., & Molnar, V. (2002). The study of boundaries in the social sciences. Annual

Review of Sociology, 28, 167–195.

Labov, W. (2006). Narrative pre-construction. Narrative Inquiry, 16(1), 37–45.

252

Langellier, K. M. (2009). Performing narrative medicine. Journal of Applied

Communication Research, 37(2), 151–158. doi:10.1080/00909880902792263.

Larkin, M. (2002). US university students ignore tanning lamp risks. The Lancet,

360(9341), 1226.

Lazovich, D., & Forster J. (2005). Indoor tanning by adolescents: prevalence, practices

and policies. European Journal of Cancer, 41, 20-27.

Leeman, M. (2013). Subjugated stories of pain and illness. In Harter, L. M., &

Associates, Imagining New Normals: A Narrative Framework for Health

Communication. Dubuque, IA: Kendall Hunt, 173-187.

Leigh, J. P., Kravitz, R. L., Schembri, M., Samuels, S. J., & Mobley, S. (2002). Physician

career satisfaction across specialties. Archives of Internal Medicine 162, 1577-

184.

Levine, J. A., Sorace, M., Spencer, J., & Siegel, D. M., (2005). The indoor tanning

industry: A review of skin cancer risk, health benefit claims and regulation.

Journal of the American Academy of Dermatology, 53, 1038-1044.

Lim, H. W., James, W. D., Rigel, D. S., Maloney, M. E., Spencer, J. M., & Bhushan, R.,

(2010). Adverse effects of ultraviolet radiation from the use of indoor tanning

equipment: Time to ban the tan. Journal of the American Academy of

Dermatology, 64, 51-60.

Lin, K. (2012). Public experts need to lead by storytelling. Blog posting, retrieved from

http://www.kevinmd.com/blog/2012/09/policy-experts-lead-storytelling.html

Lindlof, T. R., & Taylor, B. C. (2002). Qualitative communication research methods (2nd

ed.). Thousand Oaks, CA: Sage.

253

Loh, A. Y. (2008). Are artificial tans the new cigarette? How plaintiffs can use the

lessons of tobacco litigation in bringing claims against the indoor tanning

industry. Michigan Law Review, 107, 365-390.

Lorig, K. R., Ritter, P. Stewart, A. L., Soebel, D., Brown, B., Bandura, A., Gonzalez, V.,

Laurant, D., & Holman, R. (2001). Chronic disease self-management program: 2-

year health status and care utilization outcomes. Medical Care, 39(11), 1217-

1223.

Lostritto, K., Ferrucci, L. M., Cartmel, B., Leffell, D. J., Molinaro, A. M., Bale, A. E., &

Mayne, S. T. (2012). Lifetime history of indoor tanning in young people: A

retrospective assessment of initiation, persistence, and correlates. BMC Public

Health 12(118), 1-9.

Magee, K. H. Poorsattar, S., Seidel, K. D., & Horning, R. L. (2007). Tanning device

usage: What are parents thinking? Journal of Pediatric Dermatology, 24(3), 216-

221.

McDonough, J. E., (2008). Using and misusing anecdote in policymaking. In Mullan, F.,

Ficklen, E., & Rubin, K. (Eds.), Narrative Matters: The power of the personal

essay in health policy. MD: Johns Hopkins University Press, 8-14.

McEntyre, M. C. (2006). Hope in hard times: Moments of epiphany in illness narratives.

The Gift of Story: Narrating Hope in a Postmodern World. Griesinger, E., &

Eaton, M. (Eds.). Waco, TX: Baylor Press, 229-246.

Melanoma International Foundation (n.d.). Retrieved from

http://melanomainternational.org/who-we-are/#.Up06Y-LBQng

254

Mendese, G., & Gilchrest, B. A. (2012). Selected indoor tanning myths and

controversies. In C.J. Heckman & S.L. Mains (eds.) Shedding Light on Indoor

Tanning. 121-132.

Mishler, E. G. (2004). Historians of the self: Restorying lives, revising identities.

Research in Human Development, 1(1-2), 101-121.

Monzoni, C., & Reuber, M. (2009). Conversational displays of coping resources in

clinical encounters between patients with epilepsy and neurologists: A pilot study.

Epilepsy & Behavior, 16(4), 652–659. doi:10.1016/j.yebeh.2009.08.004.

Morgan, S. E., Harrison, T. R., Chewing, L., Davis, L., & DiCorcia, M. (2007).

Entertainment (mis)education: The framing of organ donation in entertainment

television. Health Communication, 22, 143-151.

Morris, D. B. (2001). Narrative, ethics, and pain: Thinking with stories. Narrative, 9(1),

55–77.

Mosher, C.E., & Danoff-Burg, S. (2010). Addiction to indoor tanning: Relation to

depression, anxiety, and substance abuse. Archives of Dermatology 146(4), 412-

417.

National Conference of State Legislatures, (2013). Indoor tanning restrictions for

minors- a state-by-state comparison. Retrieved from http://www.ncsl.org/issues-

research/health/indoor-tanning-restrictions.aspx

National Dairy Council (2009). Milk’s unique nutrient package: Benefits for bones and

beyond. Retrieved from

http://www.nationaldairycouncil.org/SiteCollectionDocuments/education_materia

ls/wic/MILKsUniqueNutrientPackage.pdf

255

National Tanning Training Institute, (2009). Training for the professional operation of

indoor tanning salons. Training Manual. Retrieved from

http://www.tanningtraining.com/btc/nttiman.pdf

Negele, A., & Habermas, T. (2010). Self-continuity across developmental change in and

of repeated life narratives. In Kate Mclean & Monisha Pasupathi (Eds.) Narrative

development in adolescence: Creating the storied self. Advancing responsible

adolescent development. (pp. 1-21) New York: Springer Science.

New York Times (2008). Retrieved from

http://www.nytimes.com/2008/12/11/health/11ackerman.html

Ochs, E., & Capps, L. (1996). Narrating the self. Annual Review of Anthropology, 25 19-

43.

Oliver, M. (1996). Defining impairment and disability: Issues at stake. In Colin Barnes &

Geof Mercer (Eds.) Exploring the divide, Leeds: The Disability Press. 29-54.

Ostrov, B. F. (2012). Q&A with Bridget Huber: How the indoor tanning industry is

selling a sun scare conspiracy. Retrieved November 25, 2013, from

http://www.reportingonhealth.org/2012/08/27/qa-bridget-huber-how-indoor-

tanning-industry-selling-sun-scare-conspiracy

Ott-Anderson, J., & Geist-Martin, P. (2003). Narratives and healing: Exploring one

family’s stories of cancer survivorship. Journal of Health Communication, 15(2),

133-143.

Pals, J. L. (2006). Narrative identity processing of difficult life experiences: Pathways of

personality development and positive self-esteem. Journal of Personality, 74(4),

1079-1109.

256

Parker-Pope, T. (2010). Is indoor tanning addictive? New York Times. Retrieved from

http://well.blogs.nytimes.com/2010/04/21/is-indoor-tanning-

addictive/?_r=0&apage=2#comments

Paul, C., Tzelepis, F., Parfitt, N., & Girgis, A. (2008). How to improve adolescents’ sun

protection behavior? Age and gender issues. American Journal of Health

Behavior, 32(4), 337-398.

Pennebaker, J. W., & Seagal, J. D. (1999). Forming a story: The health benefits of

narrative. Journal of Clinical Psychology, 55(10), 1243–1254.

Polkinghorne, D. (1988). Narrative Knowing and the Human Sciences. Albany: State

University of New York Press.

Poorsattar, S. P., & Hornung, R. L. (2007). Television turning more teens toward

tanning? Journal of the American Academy of Dermatology, 58, 171-172.

Radcliffe, N. M., & Klein, W. M. (2002). Dispositional, unrealistic, and comparative

optimism: Differential relations with the knowledge and processing of risk

information and beliefs about personal risk. Personality and Social Psychology

Bulletin, 28(6), 836–846.

Randall, W. E. (2009). Transcending our stories: A narrative perspective on spirituality in

later life. Critical Social Work, 10(1), 31-46.

Ratanaprasatporn, L., Neustadter, J., & Weinstock, M. A., (2011). Scientific

developments in indoor tanning and melanoma. Journal of the American Academy

of Dermatology 64(4), 783-785.

Rawlins, W. K. (2009). Narrative Medicine and the Stories of Friends. Journal of Applied

Communication Research, 37(2), 167–173. doi:10.1080/00909880902792230.

257

Rawlins, W.K. (2007). Living scholarship: A field report. Communication Methods and

Researcher as subject. In N. Denzin & Y. Lincoln (Eds.), The Sage handbook of

Qualitative Research (2nd ed.). Thousand Oaks, CA: SAGE. 733-768.

Reynolds, D., (2007). Literature review of theory-based empirical studies examining

adolescent tanning practices. Dermatology Nursing, 19(5), 440-447.

Ricoeur, P. (1981). Hermeneutics and the human sciences. In J.B. Thompson (Ed),

Hermeneutics and the human sciences. Cambridge UK: Cambridge University

Press.

Riessman, C. K. (2002). Illness narratives: Positioned identities. Wales, UK: Invited

Annual Lecture Health Communication Research Centre. Cardiff University.

Retrieved from http://www.labwales.org.uk/encap/resources/HCRC-narratives.pdf

Rimal, R. N., & Real, K. (2003). Understanding the influence of perceived norms on

behaviors. Communication Theory 13(2), 184-203.

Rimmon-Kenan, S. (1999). The story of “I”: Illness and narrative identity. Narrative

10(1), 9-27.

Rodden, J. (2008). How do stories convince us? Notes towards a rhetoric of narrative.

College Literature, 35(1), 148–173.

Rosoff, S. M., & Leone, M. C. (1989). The prestige of dermatologists: Are they last

among equals? International Journal of Dermatology 28(6), 377-380.

Sahin, Z., & McVicker, M. (2009). The Use of Optimism in Narrative Therapy with

Sexual Abuse Survivors. Journal of European Psychology Students, 1(1), Art. 7.

Sanjuan, P., Arranz, H., & Castro, A. (2012). Pessimistic attributions and coping

strategies as predictors of depressive symptoms in people with coronary heart

disease, Journal of Health Psychology, 17(6), 886-895.

258

Schram, P. (2004). Learning wisdom from the Jewish oral tradition. In, Spirituality,

Action, & Pedagogy: Teaching from the Heart, Diana Denton and Will Ashton,

(Eds.) New York: Peter Lang, 73-88.

Schram, P. (2005). Elijah's cup of hope: Healing through the Jewish storytelling tradition.

Storytelling, Self, Society, 1(2), 103-117.

Seeley, C., & Reason, P. (2008). Expressions of energy: An epistemology of

presentational knowing. Knowing differently: Arts-based and collaborative

research methods. Pranee Liamputtong & Jean Rumbold, (Eds.), New York, NY:

Nova Scotia Publishers, 25-46.

Seligman, M. E., & Peterson, C. (1984). Causal explanations as a risk factor for

depression: Theory and evidence, Psychological Review, 91(3), 347-374.

Seligman, M. E. (2004). Can happiness be taught? Daedalus, 133(2), 80–87.

Shah, A., Smith, S., Heckman, C. J., & Feldman, S. R. (2012). Tanning dependence: Is

tanning an addiction? In C. J. Heckman & S. L. Manne (Eds.) Shedding light on

indoor tanning. New York: Springer, 107-121.

Shapiro, J. (2011). Illness narratives: reliability, authenticity and the empathic witness.

Medical Humanities 37, 68-72.

Sharf, B. (2008). Out of the closet and into the legislature, Breast cancer stories: How

narratives about one disease and shaped policy. Narrative matters: The power of

the personal essay in health policy. Mullan, F., Ficklen, E., & Rubin, K. (Eds.).

Baltimore, MD: Johns Hopkins University Press, 14-21.

Sharf, B. F., & Vanderford, M. L. (2003). Illness narratives and the social construction of

health. In A. Dorsey, K.I. Miller, R. Parrot & T. Thompson (Eds.) Handbook of

health communication, Mahwah, NJ: Lawrence Erlbaum Associates, 9-34.

259

Shoveller, J. A., Lovato, C. Y., Young, R. A., & Moffat, B. (2003). Exploring the

development of sun-tanning behavior: A grounded theory study of adolescents'

decision-making experiences with becoming a sun tanner. International Journal

of Behavioral Medicine, 10, 299-314.

Silko, L. M. (1977). Ceremony, New York, NY: Viking.

Simona, L. (2009). Adolescents in different contexts: The exploration of identity through

possible selves. Cognition, Brain and Behavior. 8(3), 221-252.

Sjoberg, L., Holm, L., Ullen, H., & Brandberg, Y. (2004). Tanning and risk perception in

adolescents. Health Risk & Society, 6(1), 81-94.

Skin Care News, (n.d.). Pro-tanning campaign HYPE: Vitamin D and sunshine. Retrieved

from http://www.skincare-news.com/a-2547-Pro-

Tanning_Campaign_HYPE_Vitamin_D_and_Sunscreen.aspx

Smart Tan (a). Retrieved from https://smarttan.com/news/index.php/breast-cancer-

preventionfocus-of-may-promotion/

Smart Tan (b). Retrieved from https://www.facebook.com/SmartTan/info

Smart Tan (c). Retrieved from https://smarttan.com/news/index.php/tannings-

international-leaders-unite/

Smith, B. (2007). The state of the art in narrative inquiry. Narrative Inquiry, 17(2), 391–

398.

Smith, B., Collinson, J. A., Phoenix, C., Brown, D., & Sparkes, A. (2009). Dialogue,

monologue, and boundary crossing within research encounters: A performative

narrative analysis. International Journal of Sport and Exercise Psychology, 7(3),

342–358. doi:10.1080/1612197X.2009.9671914.

260

Southwick (2013). PennLive.com Retrieved from

http://www.pennlive.com/midstate/index.ssf/2013/04/a_new_push_to_prohibit_m

inors.html

Spector-Mersel, G. (2010). Narrative research: Time for a paradigm. Narrative Inquiry,

20(1), 204–224. doi:10.1075/ni.20.1.10spe.

Stapleton, J., Turrisi, R., & Hillhouse, J. (2008). Peer crowd identification and indoor

tanning behavioral tendencies. Journal of Health Psychology 13(7), 940-945.

Stein, R. (2004) Vitamin D deficiency called major health hazard. The Washington Post.

Retrieved from http://www.washingtonpost.com/wp-dyn/articles/A43711-

2004May20_2.html

Steiner, J. F. (2005). Commentary. Retrieved from

http://jama.jamanetwork.com/article.aspx?articleid=201984

Stellefson, M., & Chaney, D. J., (2006). Determinants of indoor tanning behavior among

adolescent females: A systematic review of the literature. The Health Educator

38(1), 15-21.

Striano, M. (2012). Reconstructing narrative: A new paradigm for narrative research and

practice. Narrative Inquiry, 22(1), 147–154. doi:10.1075/ni.22.1.09str.

Stunz, B. (2008). Less than the Least Blog. Retrieved from

https://www.law.upenn.edu/blogs/dskeel/archives/2008/02/welcome.html#more

Suarez, A., Dellavalle, R. P., & Robinson, J. K. (2012). Indoor tanning regulation,

enforcement, taxation and policy. In C. J. Heckman & S. L. Manne (Eds.)

Shedding light on indoor tanning. New York: Springer, 147-165.

Sultan, D. (n. d.). Tanning salons, a shocking look behind the scenes. Hip Mix. Net,

Online forum Retrieved from http://www.hipmix.net/beauty-article.php?pid=26

261

Sunlight Institute. Retrieved from www.sunlightinstitute.org

Sunlight, Nutrition, and Health Research enter (SUNARC), (n.d.). Benefactors

Information. Retrieved from http://www.sunarc.org/benefactors.htm

Sunwolf, Frey, L. R., & Lesko, J. W. (2008). Story as Medicine: Empirical Research on

the Healing Effects of Health Narratives. In K. B. Wright & S. D. Moore (Eds.),

Health communication: An applied sourcebook. Cresskill, NJ: Hampton Press,

35-61.

Sunwolf. (2005). Rx Storysharing, prn: Stories as Medicine Prologue to the Special

Healing Issue. Storytelling, Self, Society, 1(2), 1–10.

Tal-Or, N., Boninger, D. S., Poran, A., & Gleicher, F. (2004). Counterfactual Thinking as

a Mechanism in Narrative Persuasion. Human Communication Research, 30(3),

301–328.

Tan Today Forums (n.d) Retrieved from http://www.tantoday.com

Tan Today Forum Discussion (n.d) Retrieved from

http://www.tantoday.com/forums/salon-discussion/43092-required-tanning-

employees.html

Tangpricha, V., Turner, A., Spina, C., Decastro, S., Chen, T. C., & Holick, M. F. (2004).

Tanning is associated with optimal vitamin D status (serum 25-hydroxyvitamin D

concentration) and higher bone mineral density. American Journal of Clinical

Nutrition 80(6), 1645-1649.

Tanning Guru (n.d.). Retrieved from http://www.thetanningguru.com/tanning-all/hello-

tanners/#axzz2lfS7jbod.

Tanning Truth (n.d.). Retrieved from http://www.tanningtruth.com/.

262

The Joint Canadian Tanning Association (a) (n.d.). Retrieved from

http://www.tanresponsibly.ca/teens/

The Joint Canadian Tanning Association (b) (n.d.). Retrieved from

http://www.tanresponsibly.ca/jcta-response-to-no-tan-is-a-safe-tan/

TMZ (2013). Tanning mom tanning again not with the sun. Retrieved from

http://www.tmz.com/2013/06/30/tanning-mom-patricia-krentcil-tanning-bed-

florida/

Tracy, S. J. (2013). Qualitative Research Methods: Collecting Evidence, Crafting

Analysis, Communicating Impact. West Sussex, U. K.: John Wiley & Sons.

Turrisi, R., Hillhouse, J., Mallett, K., Stapleton, J., & Robinson, J., (2012). A systematic

review of intervention efforts to reduce indoor tanning. In C. J. Heckman & S. L.

Manne (Eds.) Shedding light on indoor tanning. New York: Springer, 135-147.

US Food and Drug Administration, (2009). Medical Devices. Retrieved from

http://www.fda.gov/MedicalDevices/ResourcesforYou/Consumers/ucm142523.ht

USA Today. (n.d.). More states restrict teen access to indoor tanning beds. Retrieved

November 9, 2013, from

http://www.usatoday.com/story/news/nation/2013/07/31/youth-melanoma-indoor-

tanning/2603373/

Vanderford, M. L., & Smith, D. H. (1996). The silicone breast implant story:

Communication and uncertainty. Mahweh, New Jersey: Lawrence Erlbaum

Associates.

Vanadia, D. (2013). CFP Narrative Matters 2014, Story talk blog,

http://www.vanadia.com/storytalk

263

Virginia Mason. Org (n.d.) Retrieved from

https://www.virginiamason.org/MelanomaFrequentlyAskedQuestions

Volpe, N. N., & Levin, R. R. (1998). Attributional style, dreaming and depression.

Personality and Individual Differences, 25(6), 1051-1061. doi:10.1016/S0191-

8869(98)00073-7

Warren, Carol, A. B. (2001). Qualitative interviewing. In J. F. Gubrium & J. A. Holstein

(Eds.) Handbook of Interviewing Research. Thousand Oaks, CA: Sage, 83-101.

Watson, N. (2002). Well I know this is going to sound very strange to you, but I don’t see

myself as a disabled person: Identity and disability. Disability and Society, 17(5),

509-527.

Weeks, T. L., & Pasupathi, M. (2010). Autonomy, Identity, and Narrative Construction

with Parents and Friends. In K. C. McLean & M. Pasupathi (Eds.), Narrative

Development in Adolescence (pp. 65–91). Boston, MA: Springer US. Retrieved

from http://www.springerlink.com/index/10.1007/978-0-387-89825-4_4

Wehner, M.R., Shive, M.L., Chren, M., Han, J., Qureshi, A.A., & Linos, E. (2012).

Indoor tanning and non-melanoma skin cancer: Systematic review and meta-

analysis. BMJ 345(e5909). Retrieved from

http://www.bmj.com/content/345/bmj.e5909

Weinstock, M. A., & Lasovich, D. (2005). Tanning and vitamin D status. American

Journal of Clinical Nutrition 82(3), 707. Retrieved from

http://ajcn.nutrition.org/content/82/3/707.1.full#ref-1

White, K. M., Robinson, N. G., Young, R. D., Anderson, P. J., Hyde, M. K., Greenbank,

S., Rolfe, T., Keane, J., Vardon, P., & Baskerville, D. (2008). Testing an extended

theory of planned behaviour to predict young people's sun safety in a high risk

264

area. British Journal of Health Psychology, 13: 435–448.

doi: 10.1348/135910707X210004.

Wiles, R., Cott, C., & Gibson, B. E. (2008). Hope, expectations and recovery from

illness: A narrative synthesis of qualitative research. Journal of Advanced Nursing

64(5), 564-567.

Woo, D. K., & Eide, M. J. (2010). Tanning beds, skin cancer and vitamin D: An

examination of the scientific evidence and public health implications.

Dermatologic Therapy 23, pp. 61-71.

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APPENDIX A: TANNING FACTS SHEETS

Melanoma Fact Sheet

Source: www.skincancer.org

 From 1970 to 2009, the incidence of melanoma increased by 800 percent among

young women and 400 percent among young men.

 One person dies of melanoma every hour (every 57 minutes).

 Of the seven most common cancers in the US, melanoma is the only one whose

incidence is increasing. Between 2000 and 2009, incidence climbed 1.9 percent

annually.

 The vast majority of mutations found in melanoma are caused by ultraviolet

radiation.

 Melanoma is the most common form of cancer for young adults 25-29 years old

and the second most common form of cancer for young people 15-29 years old.

 The number of women under age 40 diagnosed with basal cell carcinoma has

more than doubled in the last 30 years; the incidence of squamous cell carcinoma

among women under age 40 has increased almost 700 percent.

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Tanning Fact Sheet

Source: wwwskincancer.org

 The vast majority of mutations found in melanoma are caused by ultraviolet

radiation.

 Melanoma is the most common form of cancer for young adults 25-29 years old

and the second most common form of cancer for young people 15-29 years old.

 Ultraviolet radiation (UVR) is a proven human carcinogen.

 The International Agency for Research on Cancer, an affiliate of the World

Health Organization, includes ultraviolet (UV) tanning devices in its Group 1, a

list of the most dangerous cancer-causing substances. Group 1 also includes

agents such as plutonium, cigarettes, and solar UV radiation.

 Currently tanning beds are regulated by the FDA as Class I medical devices18, the

same designation given elastic bandages and tongue depressors.

 Frequent tanners using new high-pressure sunlamps may receive as much as 12

times the annual UVA dose compared to the dose they receive from sun exposure.

 Just one indoor tanning session increases users’ chances of developing melanoma

by 20 percent, and each additional session during the same year boosts the risk

almost another two percent.

 Among people ages 18 to 29 who have ever used a tanning bed and were

diagnosed with melanoma, 76 percent of those melanoma cases were attributable

to tanning bed use.

 People who tan indoors just four times per year increase their risk of basal cell

carcinoma and squamous cell carcinoma by 15 percent.

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 Just one indoor tanning session per year in high school or college boosts the risk

of basal cell carcinoma by 10 percent. That risk is increased to 73 percent if one

tans six times per year.

 Indoor tanners have a 69 percent increased risk of early-onset basal cell

carcinoma.

 Approximately 25 percent of early-onset basal cell carcinomas could be avoided

if an individual never tanned indoors.

 People who first use a tanning bed before age 35 increase their risk for melanoma

by 75 percent.

 Ten minutes in a sunbed matches the cancer-causing effects of 10 minutes in the

Mediterranean summer sun.

 Nearly 30 million people tan indoors in the U.S. every year. Two to three million

of them are teens.

 The indoor tanning industry has annual estimated revenue of $5 billion.

 People who use tanning beds are 2.5 times more likely to develop squamous cell

carcinoma and 1.5 times more likely to develop basal cell carcinoma.

 Seventy-one percent of tanning salon patrons are females.

On an average day, more than one million Americans use tanning salons.

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APPENDIX B: IRB APPROVED FORMS

Patient Recruiting Form Greetings: The physician who gave you this letter is assisting me as I seek individuals and families who might become participants in my research study of indoor tanning and illness. You were selected to receive this letter because you have been personally affected by illness that was a result of indoor tanning. After reading this letter, I hope that you will consider joining the project. I am a researcher from Ohio University, and I will be conducting interviews as part of a doctoral dissertation. The focus of this dissertation will be the personal stories of patients, families and physicians. I will be traveling to your area and conducting interviews during the week of ______.  Interviews will be conducted at times and places that are convenient and comfortable for participants  Interviews will last approximately one hour  Interviews will be tape recorded  Interviews may be stopped at any time Please note that every care will be taken to make the interview process comfortable. Interviewees may choose to remain anonymous in the final paper. I am happy to answer any questions you might have about the research project or the interview process. My advisor, Dr. Bill Rawlins will be supervising this project and he can also be contacted by email at [email protected]. If you would be willing to take part in this project by being interviewed, please contact me by email or telephone at the address below by ______. My contact information is included below. I would be grateful for the opportunity to speak with you. Thanks for your consideration, Vicki Crooks Ohio University School of Communication Studies Lasher Hall, 43 West Union Athens, Ohio 45701 (541) 331-3638, [email protected]

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Physician Permission Letter To Whom it May Concern: Please accept this letter as confirmation that Vicki Crooks has my permission to conduct in-depth interviews and observations in my office. Additionally, I have agreed to identify relevant patients, family members, and others that have a relevant connection to her research project and will act as a liaison between these individuals and Ms. Crooks. After identifying potential research subjects, I will provide them with a letter from Ms. Crooks that explains the nature of her research and describes how to contact Ms. Crooks if they would like to participate. No identifiable patient information, including but not limited to, names and contact information will be shared directly with the researcher. If you have questions or would like any additional information, please feel free to contact me at 601-355-8555 or [email protected]. I look forward to seeing this important project carried out. Sincerely,

Sabra Sullivan, MD, PhD, FAAD Professor of Medicine (Dermatology) University of Mississippi CEO, Dermatology Associates

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Consent Form-Patients Ohio University Consent Form Title of Research: Tanning Stories

Researcher: Vicki Crooks IRB # 13X118

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Explanation of Study

The primary focus of this study will be the individual stories of patients and physicians. This project is a narrative account of the consequences of indoor tanning. “Narrative account” means I will be using individual stories to tell a larger story about tanning and skin cancer. I will be speaking with patients and/or the families of patients, who have been diagnosed with skin cancer after tanning. I also intend to speak with physicians and other care providers regarding their personal experiences treating patients and their efforts either with patients or at the legislative level, to reduce tanning. In addition to the stories of individual patients and physicians, I will include stories from organizations such as the American Academy of Dermatology (AAD) and the pro- tanning, Indoor Tanning Association (ITA). I will examine how organizational stories about tanning and health are being used to convince policymakers and the public. My goal in this is to demonstrate that a larger national conversation about tanning is taking place, and to point out that believing one story over another may have serious consequences. If you agree to participate You will be asked several open-ended questions about your experiences related to the study topic of tanning. Interviews will be tape-recorded and last about an hour. You may stop the interview at any time. Risks and Discomforts

No serious risks or discomforts are anticipated however, it is sometimes emotionally difficult to discuss one’s own illness or the illness of another. The interview may be paused or stopped should you become uncomfortable. Benefits

The benefits of participating in this interview involve the opportunity to be heard, to be listened to by someone who is supportive and appreciative. The knowledge that one’s personal stories could be used to gain insight or to help others is another potential benefit. A story can raise awareness, and personalize statistical evidence. I hope this study will contribute compelling personal stories to the larger conversation on tanning and health. Confidentiality and Records

These interviews are being conducted as part of the research for a doctoral dissertation. You will be given the option of having your name used in the final paper or having identifying information altered or removed in order to protect your anonymity. If you prefer to remain anonymous, study information will be kept confidential by the researcher and recordings and identifying codes will be kept in a locked cabinet and later destroyed. Please indicate your preference by checking one of the boxes below. I wish to remain anonymous

I do not wish to remain anonymous.

Additionally, while every effort will be made to keep your study-related information confidential, there may be circumstances where this information must be shared with:

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* Federal agencies, for example the Office of Human Research Protections, whose responsibility is to protect human subjects in research; * Representatives of Ohio University (OU), including the Institutional Review Board, a committee that oversees the research at OU; OU faculty serving as research supervisors. Contact Information If you have any questions regarding this study, please contact:

Researcher:

Vicki Crooks Ohio University School of Communication Studies Lasher Hall, 43 West Union Athens, Ohio [email protected]

Cell Phone (541) 331-3638

Advisor:

William K. Rawlins Ohio University School of Communication Studies Lasher Hall, 43 West Union Athens, Ohio [email protected]

If you have any questions regarding your rights as a research participant, please contact Jo Ellen Sherow, Director of Research Compliance, Ohio University, (740)593-0664.

By signing below, you are agreeing that:  you have read this consent form (or it has been read to you) and have been given the opportunity to ask questions and have them answered  you have been informed of potential risks and they have been explained to your satisfaction.  you understand Ohio University has no funds set aside for any injuries you might receive as a result of participating in this study  you are 18 years of age or older  your participation in this research is completely voluntary  you may leave the study at any time. If you decide to stop participating in the study, there will be no penalty to you and you will not lose any benefits to which you are otherwise entitled.  Signature Date

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Printed Name Version Date: 4/25/13

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Consent Form-Physicians Ohio University Consent Form

Title of Research: Tanning Stories

Researcher: Vicki Crooks IRB # 13X119

You are being asked to participate in research. For you to be able to decide whether you want to participate in this project, you should understand what the project is about, as well as the possible risks and benefits in order to make an informed decision. This process is known as informed consent. This form describes the purpose, procedures, possible benefits, and risks. It also explains how your personal information will be used and protected. Once you have read this form and your questions about the study are answered, you will be asked to sign it. This will allow your participation in this study. You should receive a copy of this document to take with you. Explanation of the Study The primary focus of this study will be the individual stories of patients and physicians. This project is a narrative account of the consequences of indoor tanning. “Narrative account” means I will be using individual stories to tell a larger story about tanning and skin cancer. I will be speaking with patients and/or the families of patients, who have been diagnosed with skin cancer after tanning. I also intend to speak with physicians and other care providers regarding their personal experiences treating patients and their efforts either with patients or at the legislative level, to reduce tanning. In addition to the stories of individual patients and physicians, I will include stories from organizations such as the American Academy of Dermatology (AAD) and the pro- tanning, Indoor Tanning Association (ITA). I will examine how organizational stories about tanning and health are being used to convince policymakers and the public. My goal in this is to demonstrate that a larger national conversation about tanning is taking place, and to point out that believing one story over another may have serious consequences.

If you agree to participate You will be asked several open-ended questions about your experiences related to the study topic of tanning. Interviews will be tape-recorded and last about an hour. You may stop the interview at any time. Risks and Discomforts

275 evidence. I hope this study will contribute compelling personal stories to the larger conversation on tanning and health. Confidentiality and Records

I do not wish to remain anonymous.

Additionally, while every effort will be made to keep your study-related information confidential, there may be circumstances where this information must be shared with: * Federal agencies, for example the Office of Human Research Protections, whose responsibility is to protect human subjects in research; * Representatives of Ohio University (OU), including the Institutional Review Board, a committee that oversees the research at OU; OU faculty serving as research supervisors Contact Information If you have any questions regarding this study, please contact:

Researcher:

Vicki Crooks Ohio University School of Communication Studies Lasher Hall, 43 West Union Athens, Ohio [email protected]

Cell Phone (541) 331-3638

Advisor:

William K. Rawlins Ohio University School of Communication Studies Lasher Hall, 43 West Union Athens, Ohio [email protected]

If you have any questions regarding your rights as a research participant, please contact Jo Ellen Sherow, Director of Research Compliance, Ohio University, (740)593-0664.

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Signature Date

Printed Name Version Date: 4/25/13

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APPENDIX C: INTERVIEW PROTOCOLS

Interview Guide for Patients

With patients, I am interested in what tanning stories they told/believed prior to illness, during their illness and after. I will be listening for indications of the intersections and impact of stories. Interview sessions will open with a discussion of the consent forms and checking to see if there are any questions or concerns. I will explain my purpose in seeking stories about the experiences of illness and tanning, making it clear that the interviewee’s comfort is my first concern. Because owning one’s story is an important consideration, based on the interviewee’s wishes, I will either use their real name or a pseudonym.

After a brief time of rapport-building conversation, I will ask about the illness experience. Below is a hypothetical list of question prompts that could be used in a patient interview. Of course I expect to “improvise” as needed during actual interviews. I include these in order to provide a sense of the tone and direction of my queries.

Sample Interview Questions

 How old were you when you began tanning? Why did you start, was there a

special occasion?

 How often did you tan?

 What did you know about tanning when you first started? Did anything change

after you had been tanning longer? Did you tan with others? Was your experience

similar to theirs?

 How did you speak about tanning before your diagnosis? Who did you speak

with?

 How did the people you were close to feel about tanning?

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 What brought you to the doctor initially?

 How old were you when you were diagnosed?

 How are you now?

 Tell me about the experience of being diagnosed.

 How did you react? How did your family react? How did your doctor react?

 How has the diagnosis and illness impacted/changed your plans? Has it changed

your relationships? What have been the best and worst parts of this experience?

 Has your illness experience changed over the course of time between your

diagnosis and today? What, if any, changes do you anticipate in the future?

 Before you were diagnosed, did you worry that tanning might be dangerous? How

do you feel about it now?

 Once you were diagnosed, did you think that indoor tanning might have been a

contributing factor, and if so, when did you have those thoughts? Could you tell

me about them? Did anyone else suggest to you that there might be a connection

between tanning and your illness? Tell me about those conversations. Do you

think there is a connection between tanning and your cancer?

 Has your thinking about tanning changed over time and if so, how? What about

people you are close to such as family and friends? Do you still tan? Why or why

not?

 Do you speak about your illness? Do you speak about tanning? Has the way you

talk about these things changed over time? How have they changed? What is the

response from others?

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 Why were you willing to speak to me? What did you expect me to ask you? Are

there any questions I should have asked but didn’t? Is there anything else I should

know?

 What would you like people to know about you? Would you like me to use your

real name or would you prefer a pseudonym?

 Thank you so much for answering my questions, do you have any questions for

me?

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Interview Guide for Physicians

My interview time with physicians with vary based on location and availability. I will have an extended period of time to spend with the physicians who are partnering with me by providing patient contacts. I expect to have shorter interviews during the

AAD Summer Meeting. These shorter interviews will consist primarily of conversations about how stories are used in the context of advocacy. In addition to these advocacy questions, the longer interviews will give me time to ask questions about patient interactions and personal experiences as well.

Brief Interview Sample Questions

 What are the laws in your state regarding tanning? Have you participated in any

legislative or lobbying efforts? Do you use stories in these efforts? Will you share

an example of the kind of story you might use?

 Are you involved in other programs or partnerships aimed at reducing tanning?

What works, what doesn’t?

 What are misconceptions you have heard about tanning? What do you feel people

need to know about tanning? What’s the best way to get the message across?

 How do you talk to people about tanning? Do you have a different approach for

different people? What are those approaches?

 Can you tell me about times you gave someone advice or attempted to persuade

them about tanning? In these situations, did you feel your efforts were or were

not successful? To what do you attribute the success or lack of success?

 How do you discuss tanning and skin cancer with patients? Do you use stories

with patients?

 Is there anything else you would like me to know?

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Additional Questions for In-depth Interviews with Physicians

 Where do you see the battle over indoor tanning in the future?

 Talk about your personal experience attempting to warn, persuade, and educate

others about indoor tanning. What has been frustrating and what has been

rewarding about these efforts?

 According to tanning industry representatives, the “sun scare” industry is all about

profits for physicians and sun screen manufacturers. Can you talk about

partnering with industry? Are dermatologists making money by campaigning

against tanning?

 The ITA has made several disparaging remarks about dermatologists; has this

impacted you personally?

 Have you had to deliver a melanoma diagnosis to a young person who tanned?

What was that like for you?

 Have you had experience with patients you considered addicted to tanning?

 What can scholars outside of dermatology do to help?

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APPENDIX D: PENNSYLVANIA TANNING BILL HISTORY

Page 1

PENNSYLVANIA INDOOR TANNING BILL HISTORY CURRENT 2013-2014 SESSION HB 1259 Provisions: An Act providing for the regulation of indoor tanning facilities; establishing the Indoor Tanning Regulation Fund; and providing for penalties. No person who is under 17 years of age shall be permitted to use a tanning facility. No person over 17 years of age, but under 18 years of age, shall be permitted to use a tanning facility without the written authorization of the person's parent or legal guardian which indicates that the parent or legal guardian consents to the use of a tanning facility by the person. Prime sponsor: Rep. Frank Farry Introduced: May 8, 2013 Referred to Health Committee, May 8, 2013 Reported as amended, May 13, 2013 First consideration, May 13, 2013 Laid on the table, May 13, 2013 Removed from table, June 18, 2013 Second consideration, June 19, 2013 Re-committed to APPROPRIATIONS, June 19, 2013 Re-reported as committed, June 20, 2013 Third consideration and final passage, June 20, 2013 Referred to the Senate Public Health and Welfare Committee, June 21, 2013 Current status: The legislature returned from summer recess on September 23, 2013. Awaiting Committee meeting and action.

2011-2012 SESSION SB 349 Provisions: An Act providing for the regulation of indoor tanning facilities and for penalties. Requires a minor to be accompanied by a parent/guardian the first time. Persons under 14 years of age may not use a tanning device unless they present written permission by a properly licensed doctor of medicine or doctor of osteopathic medicine. Prime sponsor: Sen. Patrick Browne Introduced: January 31, 2011 Referred to Public Health and Welfare Committee January 31, 2011 Reported as committed, June 8, 2011 First consideration, June 8, 2011 Re-referred to Appropriations Committee, June 14, 2011 Re-reported as amended, October 24, 2011 Second consideration, October 26, 2011 Third consideration and final passage, October 31, 2011

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Referred to the House Health Committee, November 1, 2011 Reported as amended, December 5, 2011 First consideration, December 5, 2011 Laid on the table, December 5, 2011 Removed from table, January 25, 2012 Laid on the table, January 25, 2012 Removed from table, March 13, 2012 Laid on the table, May 10, 2012 Removed from table, May 10, 2012 Laid on the table, May 23, 2012 Removed from table, September 24, 2012 Laid on the table, October 16, 2012 Removed from table, October 16, 2012 Bill tabled, October 16, 2012 Final status: Died on the House floor Page 2

HB 369 Provisions: An Act amending Title 18 (Crimes and Offenses) of the Pennsylvania Consolidated Statutes, further providing for indoor tanning. A person commits an offense if the person permits anyone under 18 years of age to utilize an indoor tanning device. Prime sponsor: Rep. RoseMarie Swanger Introduced: February 1, 2011 Referred to Judiciary Committee February 1, 2011 Final status: Died in committee

2009-2010 SESSION SB 460 Provisions: An Act providing for the regulation of indoor tanning facilities and for penalties. Requires a minor to be accompanied by a parent/guardian the first time. Persons under 14 years of age may not use a tanning device unless they present written permission by a properly licensed doctor of medicine or doctor of osteopathic medicine. Prime sponsor: Sen. Patrick Browne Introduced: March 2, 2009 Passed in Senate June 29, 2010 First consideration in House September 27, 2010 Re-referred to House Appropriations Committee September 27, 2010 Final status: Died in committee

SB 461 Provisions: An Act amending Title 18 (Crimes and Offenses) of the Pennsylvania Consolidated Statutes, further providing for indoor tanning.

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A person commits an offense if the person permits anyone under 18 years of age to utilize an indoor tanning device without the parent or guardian of the individual giving consent for the indoor tanning and being present at the time of the indoor tanning of the individual. Prime sponsor: Sen. Patrick Browne Introduced: March 2, 2009 Referred to Judiciary Committee March 2, 2009 Final status: Died in committee

HB 1992 Provisions: An Act providing for the regulation of tanning facilities and for powers and duties of the Department of Health; and prescribing penalties. A tanning facility shall not permit a minor between 14 and 18 years of age to use any tanning equipment unless the minor provides a consent form signed by the minor's parent or legal guardian at the time of first exposure and the signature of the consent form is witnessed by an operator. A minor under 14 years of age may not use tanning equipment unless deemed medically necessary as evidenced by a prescription from a health care professional authorized and licensed by law to prescribe drugs. Prime sponsor: Rep. Michael McGeehan Introduced: September 21, 2009 Referred to Health and Human Services Committee September 21, 2009 Final status: Died in committee Page 3 HB 2048 Provisions: An Act providing for the regulation of indoor tanning facilities and for powers and duties of the Department of Health; and prescribing penalties. A tanning facility shall not permit a minor between 14 and 18 years of age to use any tanning equipment unless the minor provides a consent form signed by the minor's parent or legal guardian at the time of first exposure and the signature of the consent form is witnessed by an operator. A minor under 14 years of age may not use tanning equipment unless deemed medically necessary as evidenced by a prescription from a health care professional authorized and licensed by law to prescribe drugs. Prime sponsor: Rep. Michael McGeehan Introduced: October 14, 2009 Referred to Health & Human Services Committee October 14, 2009 Final status: Died in committee

SB 1319 Provisions: An Act providing for the regulation of tanning facilities and for powers and duties of the Department of Health; and prescribing penalties. A tanning facility shall not permit a minor between 14 and 18 years of age to use any tanning equipment unless the minor provides a consent form signed by the minor's parent

285 or legal guardian at the time of first exposure and the signature of the consent form is witnessed by an operator. A minor under 14 years of age may not use tanning equipment unless deemed medically necessary as evidenced by a prescription from a health care professional authorized and licensed by law to prescribe drugs. Prime sponsor: Sen. Lawrence Farnese Introduced: April 14, 2010 Referred to Public Health and Welfare Committee April 14, 2010 Final status: Died in committee

HB 2642 Provisions: An Act amending Title 18 (Crimes and Offenses) of the Pennsylvania Consolidated Statutes, further providing for indoor tanning. A person commits an offense if the person permits anyone under 18 years of age to utilize an indoor tanning device. Prime sponsor: Rep. RoseMarie Swanger Introduced: July 6, 2010 Referred to Judiciary Committee July 6, 2010 Final status: Died in committee

2007-2008 SESSION SB 406 Provisions: An Act providing for the regulation of indoor tanning facilities and for penalties. All minors 14 to 18 years of age shall be accompanied by their parent or legal guardian in order to use a tanning device. Persons under 14 years of age may not use a tanning device unless they present written permission by a properly licensed doctor of medicine or doctor of osteopathic medicine. Prime sponsor: Sen. Patrick Browne Introduced: March 13, 2007 Referred to Public Health and Welfare Committee March 13, 2007 Final status: Died in committee Page 4 SB 407 Provisions: An Act amending Title 18 (Crimes and Offenses) of the Pennsylvania Consolidated Statutes, further providing for indoor tanning. A person commits an offense if the person permits anyone under the age of 18 years to utilize an indoor tanning device without the parent or guardian of the individual giving consent for the indoor tanning and being present at the time of the indoor tanning of the individual. Prime sponsor: Sen. Patrick Browne Introduced: March 13, 2007 Referred to Judiciary Committee March 13, 2007 Final status: Died in committee

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2005-2006 SESSION SB 1211 Provisions: An Act amending Title 18 (Crimes and Offenses) of the Pennsylvania Consolidated Statutes, further providing for indoor tanning. A person commits an offense if the person permits anyone under the age of 18 years to utilize an indoor tanning device without the parent or guardian of the individual giving consent for the indoor tanning and being present at the time of the indoor tanning of the individual. Prime sponsor: Sen. Patrick Browne Introduced: June 16, 2006 Referred to Judiciary Committee June 16, 2006 Final status: Died in committee

SB 1210 Provisions: An Act providing for the regulation of indoor tanning facilities and for penalties. All minors 14 to 18 years of age shall be accompanied by their parent or legal guardian in order to use a tanning device. Persons under 14 years of age may not use a tanning device unless they present written permission by a properly licensed Doctor of Medicine or Doctor of Osteopathic Medicine. Prime sponsor: Sen. Patrick Browne Introduced: June 21, 2006 Referred to Public Health and Welfare Committee June 21, 2006 Final status: Died in committee

HB 815 Provisions: Proposed State Budget Included provision of $100,000 for start up costs for inspecting and licensing of tanning facilities. The bill was amended and the provision struck out before the bill passed. Prime sponsor: Rep. Brett Feese Introduced: March 14, 2005 Final status: Approved by the Governor July 7, 2005 Page 5 HB 548 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; imposing penalties; and making a repeal. Regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; imposing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the

287 minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Elinor Taylor Introduced: July 13, 2006 Referred to Public Health and Welfare Committee July 13, 2006 Final status: Died in committee

2003-2004 SESSION HB 109 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; imposing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Elinor Taylor Introduced: February 4, 2003 Passed in the House June 29, 2004 Referred to Senate Consumer Protection and Professional Licensure Committee July 4, 2004 Reported as amended November 9, 2004 First consideration November 9, 2004 Re-referred to Appropriations Committee November 16, 2004 Final status: Died in committee

2001-2002 SESSION SB 783 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities and providing tanning equipment services; requiring that certain warnings be given and safeguards be taken; providing for powers and duties of the Department of Health; imposing a penalty; and making a repeal. The registrant shall not allow individuals under 18 years of age to use tanning equipment unless the individual provides a consent form and a statement, described in subsection (a), signed by that individual's parent or legal guardian. Prime sponsor: Sen. J. Barry Stout Introduced: April 5, 2001 Referred to Consumer Protection and Professional Licensure Committee April 5, 2001 Final status: Died in committee Page 6

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HB 795 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; imposing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Elinor Taylor Introduced: February 20, 2001 Referred to Health and Human Services February 20, 2001 Final status: Died in committee 1999-2000 SESSION SB 551 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities and providing tanning equipment services; requiring that certain warnings be given and safeguards be taken; providing for powers and duties of the Department of Health; providing a penalty; and making a repeal. The registrant shall not allow individuals under 18 years of age to use tanning equipment unless the individual provides a consent form and a statement, described in subsection (a), signed by that individual's parent or legal guardian. Prime sponsor: Sen. J. Barry Stout Introduced: March 10, 1999 Referred to Consumer Protection and Professional Licensure Committee March 10, 1999 Final status: Died in committee

HB 595 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; imposing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Elinor Taylor Introduced: May 11, 1999 Referred to Consumer Protection and Professional Licensure Committee May 11, 1999

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Final status: Died in committee Page 7 1997-1998 SESSION SB 1225 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities and providing tanning equipment services; requiring that certain warnings be given and safeguards be taken; providing for powers and duties of the Department of Health; providing a penalty; and making a repeal. The registrant shall not allow individuals under 18 years of age to use tanning equipment unless the individual provides a consent form and a statement, described in subsection (a), signed by that individual's parent or legal guardian. Prime sponsor: Sen. J. Barry Stout Introduced: December 10, 1997 Referred to Consumer Protection and Professional Licensure Committee December 10, 1997 Final status: Died in committee

HB 507 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; providing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Elinor Taylor Introduced: February 12, 1997 Passed in House May 13, 1997 Referred to Senate Consumer Protection and Professional Licensure Committee May 15, 1997 Reported as committed October 28, 1997 First consideration October 28, 1997 Re-referred to Appropriations Committee November 17, 1997 Re-reported as amended, November 9, 1998 Laid on the Table November 24, 1998 Final status: Died in committee

1995-1996 SESSION HB 1998 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; providing penalties; and making a repeal.

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Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Elinor Taylor Introduced: September 19, 1995 Passed in House June 25, 1996 Referred to Consumer Protection and Professional Licensure Committee June 25, 1996 Reported as committed November 13, 1996 First consideration November 13, 1996 Re-referred to Senate Appropriate Committee November 18, 1996 Final status: Died in committee Page 8 1993-1994 SESSION HB 648 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; providing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person 14 years of age or younger shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. Timothy Pesci Introduced: March 22, 1993 Referred to Health and Welfare Committee March 22, 1993 Final status: Died in committee

1991-1992 SESSION HB 1704 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; providing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person under 14 years of age shall be accompanied by a parent or legal guardian when using a tanning device.

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Prime sponsor: Rep. John Broujos Introduced: June 18, 1991 Passed in the House February 4, 1992 Referred to Senate Consumer Protection and Professional Licensure Committee February 10, 1992 Final status: Died in committee

1989-1990 SESSION HB 1786 Provisions: An Act regulating tanning facilities; providing for the registration of persons operating tanning facilities; requiring that certain warnings be given and safeguards be taken; providing penalties; and making a repeal. Before any person between 14 and 18 years of age uses a tanning device, he or she shall give the tanning facility a statement, signed by his or her parent or legal guardian, stating that the parent or legal guardian has read and understood the warnings given by the tanning facility, consents to the minor's use of a tanning device and agrees that the minor will use the protective eyewear that the tanning facility provides. A person under 14 years of age shall be accompanied by a parent or legal guardian when using a tanning device. Prime sponsor: Rep. John Broujos Introduced: June 28, 1989 Referred to Consumer Affairs Committee June 28, 1989 Final status: Died in committee Page 9

HB 1848 Provisions: An Act amending the "Beauty Culture Law," reestablishing the State Board of Cosmetology; providing for its composition, powers and duties; making editorial changes; and making a repeal. The board may not prescribe or enforce any regulation prohibiting the use of any type of tanning unit in cosmetology shops unless the United States Food and Drug Administration, or another Federal or Commonwealth agency of comparable expertise on matters of public health, determines that the use of that type of tanning unit in accordance with the manufacturer's instructions presents a serious risk to the public. Prime sponsor: Rep. Gerald McMonagle Introduced: January 24, 1984 Final status: Approved by the Governor June 30, 1984

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APPENDIX E, EVIDENCE FROM THE FTC HEARING

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APPENDIX F, AN EXAMPLE OF LEGISLATIVE EFFORT BY THE ITA

Dear Ohio Indoor Tanning Professional,

The Indoor Tanning Association are working with Ohio businesses to defeat a bill pending in Columbus that would have a very negative impact on your business and take away a very basic right of parents -- the right to decide whether or not a teen can suntan indoors. H 119 – would require a teen under the age of 18 to have doctor's prescription to tan indoors! No matter what the parents say! This is a teen tan ban by another name!

Based on our experiences in other states, we know that when business owners and citizens, who would be affected by such an unnecessary intrusion of government in their daily lives, let the legislature know they are adamantly opposed to a bill, we can stop it.

Please take a minute to click this link:

Business Owners and Employees Against the Ohio Teen Tan Ban

This will send an email to your state Representative and Senator opposing this outrageous legislation.

It's EASY. Once you are on the site, you can either personalize the letter already present in the message field or send it as is. Don't forget to enter your name, email address, phone number and organization (business name). The program directs the email to the proper offices.

If you can get your friends and family to do this as well, please use this link we set up for customers:

Customers Against the Ohio Teen Tan Ban

This is a very serious threat, so please contact other salons in your area and spread the word about this legislation. Forward this email to anyone who is willing to support our campaign and encourage your employees, friends and customers to take part as well.

If you have any questions or want to get more involved, please call or email the ITA at (202) 367-1142 or [email protected]

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APPENDIX G, COUPON FOR FREE TANNING, AVAILABLE ON THE OHIO

UNIVERSITY CAMPUS

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