DISSERTATION AM I UGLY OR DO I HAVE BDD?: PERSONAL DISCLOSURE AND SOCIAL SUPPORT ON A BODY DYSMORPHIC DISORDER ONLINE FORUM Submitted by Eva E. Fisher Department of Journalism and Media Communication In partial fulfillment of the requirements For the Degree of Doctor of Philosophy Colorado State University Fort Collins, Colorado Summer 2016 Doctoral Committee: Advisor: Kirk Hallahan Donna Rouner Marilee Long Jennifer Ogle Elizabeth Williams Copyright by Eva E. Fisher 2016 All Rights Reserved ABSTRACT AM I UGLY OR DO I HAVE BDD?: PERSONAL DISCLOSURE AND SOCIAL SUPPORT ON A BODY DYSMORPHIC DISORDER ONLINE FORUM The current study used an emergent research design that employed qualitative content analysis to understand how individuals with body dysmorphic disorder (BDD) communicate with their peers in an online support forum (psychforum.com/body-dysmorphic-disorder). The purpose was to explore (a) the communication activities on the forum, (b) the personal experiences with BDD disclosed by participants, (c) the categories of social support sought and shared, and (d) the social support provided and roles performed by the most frequent posters to the forum. The data sample consisted of 911 messages posted by 225 participants during 2012. The primary communication activities on the forum were asking about other members’ personal experiences and seeking support, disclosing personal experiences and providing support, engaging in conversations, and storytelling. Personal disclosures included appearance concerns (feeling ugly, depressed, guilty, ashamed, angry, and suicidal), compulsive behaviors (plastic surgery, mirror/photograph checking, and social comparison), the impact on one’s personal life, and recovery from BDD (treatment, diagnosis, coping, and overcoming symptoms). Social support sought and shared included informational, emotional, and social network support. Informational support topics included diagnosis, treatment, overcoming symptoms, and recovery. Emotional support took the form of empathy, caring/concern, gratitude, encouragement, sympathy, compliments, and validation. Social network support reinforced that people who understand the disorder were present on the forum and could provide companionship. Although not common, unsupportive comments (disagreement, disapproval, criticism/sarcasm, and flaming) were also present. The five most frequent posters were emergent leaders whose supportive roles supplemented those of the two forum moderators. The most frequent poster was a male who played a lead role in providing ii informational and social network support, along with four frequent female posters whose primary contribution was providing emotional support. The five emergent leaders and moderators also performed functional roles, including greeter, advocate, arbiter, mediator/harmonizer, corroborator/validator, information/opinion giver, evaluator/critic, and encourager/cheerleader, that were critical to the successful functioning of the forum. The study discusses five key conclusions (themes) that offer valuable insight into how members communicated on the forum: (a) personal disclosure facilitated social support in initial posts and responses, (b) group members served primarily as support providers or support seekers whose behaviors were complementary and essential to the successful functioning of the forum, (c) contributions to the forum varied by gender with females providing more personal disclosure and social support than males, (d) the forum served as a coping mechanism where members shared coping strategies and coping assistance, and (e) the forum offered members peer support within an online community that supplemented the support received from other online and in-person sources. The study underscores the growing importance of peer-to-peer communication and contributes to the limited research on online support groups for individuals coping with serious mental illness. As a result of this investigation, health communication scholars will have an increased understanding of why individuals with stigmatized health conditions turn to their peers to find the support they need online. In addition, this study provides BDD researchers and clinicians with an increased awareness about the resources and support needed by those suffering from the disorder. iii ACKNOWLEDGEMENTS I would like to thank my adviser Dr. Kirk Hallahan, and my dissertation committee members, Dr. Marilee Long, Dr. Donna Rouner, Dr. Jennifer Ogle, and Dr. Elizabeth Williams for their guidance, assistance, and encouragement during this research project. I would also like to express my sincere gratitude and appreciation to the faculty members in the Department of Journalism and Technical Communication at Colorado State University. Thank you for your support, for your valuable instruction throughout the graduate program, and for serving as role models for me to follow my dream of receiving my Ph.D. I would also like to thank my fellow Ph.D. students in the department who provided mutual support to one another during graduate school. I would like to acknowledge Stephanie Ashley and Caitlin Evans Wagner who served as coders for the reliability tests for the study. Your patience with the process of training, coding, and providing feedback on the coding guide helped make the project successful. Many thanks are due to Douglas Stansberry for his love and support during the dissertation research and writing process. I would also like to express my gratitude to my family and friends who were always available to provide encouragement when needed. Finally, I wish to thank my parents who passed away in 2000 for providing guidance and support as I pursued each of my previous career goals. I know that by receiving my Ph.D. in Public Communication and Technology, I would have made them both proud. iv TABLE OF CONTENTS ABSTRACT .................................................................................................................................................. ii ACKNOWLEDGEMENTS ......................................................................................................................... iv LIST OF TABLES ....................................................................................................................................... ix LIST OF FIGURES ...................................................................................................................................... x CHAPTER 1: INTRODUCTION ................................................................................................................. 1 Serious Mental Illness and BDD ................................................................................................................... 2 Body Dysmorphic Disorder ............................................................................................................. 4 Communication about BDD ............................................................................................................ 7 Purpose of the Study ..................................................................................................................................... 8 Background: Health Communication with Providers and Peers ................................................................... 9 Patient-Provider Health Communication ....................................................................................... 10 Peer-to-Peer Health Communication ............................................................................................. 11 Motivations for Using Online Health Communication .................................................................. 13 Significance of the Study ............................................................................................................................ 15 Dissertation Overview ................................................................................................................................ 15 CHAPTER 2: LITERATURE REVIEW AND RESEARCH QUESTIONS.............................................. 17 Personal Disclosure ..................................................................................................................................... 17 Social Support ............................................................................................................................................. 19 Social Support by Males and Females ........................................................................................... 21 Categories of Social Support ......................................................................................................... 22 Online versus Offline Support Groups........................................................................................................ 24 Offline Support Groups.................................................................................................................. 24 Online Support Groups .................................................................................................................. 25 Research Questions ..................................................................................................................................... 28 v Communication Activities on the BDD Forum ............................................................................. 28 Personal Disclosure on the BDD Forum ........................................................................................ 29 Social Support on the BDD Forum ...............................................................................................