A Guide for CAMPUS COUNSELING SERVICES

Enabling Campus Mental Health Professionals to Support Students with Type 1 TABLE OF CONTENTS 2 Introduction 3 CDN’s REACH Initiative 4 What is Diabetes? 6 6 Type 2 Diabetes 7 Other Forms of Diabetes 7 Medications in Diabetes Management

8 Differentiating Between T1D and T2D 10 Glossary of Terms 14 Living with Diabetes 18 Diabetes and Mental Health 19 Depression 25 Anxiety 27 ADHD 29 Disordered Eating 32 Additional Resources 34 Highlighting Our Contributors 36 More from CDN SPONSORS A Guide for Counseling Services

A Special Thanks to Contributors to our Booklets

PARTNERS

SPONSERS CDN’S CONTENT COLLABORATORS

The following members of CDN’s Campus Advisory Committee have each played an integral role in the creation and review of these booklets. CDN creates its resources in partnership with experts in each space, ensuring the information we provide is relevant to you, is student-centered, and impactful for everyone. Dr. Jennifer Saylor, PhD, APRN, ANCS-BC: Assistant Professor in the School of Nursing at the University of Delaware Kittie Wyne, MD PhD: Director of the Ohio State University Adult Type 1 Diabetes Program Margaret Camp, Med: Director of Student Accessibility Services at Clemson University Rachel Selinger: Pharmacist and DCES at the University of North Carolina at Chapel Hill Campus Health Pharmacy Sara Lee, MD: Associate Professor of Pediatrics, Case Western Reserve University School of Medicine; Director of Health Services, Case Western Reserve University Sarah Fech-Baughman: Director of Litigation at the American Diabetes Association Tiki Ayiku: Senior Director of Educational Programs at NASPA Tom Thompson: Interim Director of California State University– Fullerton William M. “Bill” McDonald: Dean of Students at the University of Georgia David M. Arnold, MSW: Assistant Vice President for Health, Safety, and Wellbeing Initiatives NASPA- Student Affairs Administrators in Higher Education INTRODUCTION A Guide for Counseling Services

Introduction

The College Diabetes Network (CDN) works for the day when all young adults with diabetes are motivated and equipped to live a healthy life so they can pursue their dreams without compromise.

The College Diabetes Network (CDN) is a 501 (c) (3) non-profit organization whose mission is singularly focused on providing young adults with type 1 diabetes (T1D) the peer connections they value and expert resources they need to successfully manage the challenging transition to independence at college and beyond.

For 10 years, College Diabetes Network (CDN) has provided peer support and expert resources to help young adults with T1D thrive on campuses across the country. Our grassroots experience has made it clear that significant and unnecessary barriers exist for students with T1D at many schools. 3

Navigating the transition to independence at college is challenging for any student, but for young adults with diabetes—or other invisible diseases— managing physical and mental health on top of academics, extracurriculars, and a social life is a daunting responsibility.

That’s why CDN is partnering with leading higher education and diabetes organizations to launch REACHtm, a multi-faceted framework designed to augment campus resources and help administrations support the wellbeing of students with diabetes and deliver upon their mission for all students enrolled.

CDN REACHtm is designed to provide administrators with the information and tools they need to reduce physical and mental health risks for their students with T1D and liability for their schools.

CDN’s Guide for Counseling Services is part of a series of resource guides for administrators on campuses. The goal of this guide is to help make campuses more clearly aware of the mental health impacts young adults and chronic illness can have while living on campus.

The other guides in this series include CDN’S Guide for Health Services and CDN’s Guide for Disability, Auxiliary, & Accessibility Services.

HEALTH DISABILITY COUNSELING SERVICES SERVICES CENTER

For information and resources, visit: collegediabetesnetwork.org/cdnreach WHAT IS DIABETES? A Guide for Counseling Services

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What is Diabetes? WHAT IS DIABETES? A Guide for Counseling Services 5

Diabetes can refer to a number of specific chronic conditions where insufficient results in sustained high blood sugar.

Although different types of diabetes have different causes and treatment regimens, they all share this common thread.

Diabetes is controlled by keeping blood glucose within a specified range, which can vary by individual.

This range can be achieved through a combination of different approaches including: A Balance of Exercise, Medication, and Food Intake

Generally, fasting blood sugar levels between 70 and 130 mg/dL are ideal.

Blood glucose levels are affected by a variety of factors – most importantly by food, insulin, and exercise. Other factors, including sleep, stress, temperature, and hormones also play a role. Even the most fastidious individual with diabetes cannot maintain perfect blood sugar numbers 100% of the time. Individuals with blood sugar levels that fall outside of the recommended range are not negligent with their care. It is often these many factors impacting their blood sugar numbers. WHAT IS DIABETES? A Guide for Counseling Services

Type 1 Diabetes (T1D) T1D is an autoimmune disease in which the pancreas produces little or no insulin. T1D is not preventable, and has no cure. The causes of T1D are not fully understood, but are related to both genetics and environmental factors. T1D typically develops during childhood or adolescence, although its onset is also seen in teens and adults. People with T1D are insulin dependent. Because they produce no insulin in their body, they must take exogenous insulin regularly to maintain blood sugar control. This can be achieved through multiple daily injections or through continuous infusion via an insulin pump. Frequent blood glucose monitoring (via finger-prick test or a continuous glucose monitor) and carbohydrate counting are also essential for people with T1D to dose their insulin properly.

DEMOGRAPHICS About 1.25 million Americans are living with T1D, including about 200,000 youth (less than 20 years old) and more than 1 million adults (20 years old and older) Type 2 Diabetes (T2D) Type 2 diabetes is a metabolic condition where the body develops resistance to insulin. Unlike type 1 diabetes, insulin is still produced by the body, but is less effective because of the body’s resistance, and not sufficient enough to keep blood sugars in a normal range. Formerly known as “adult-onset” diabetes, type 2 diabetes occurs more often in older adults, but earlier onset in children and young adults is increasing. Typical treatment can vary for people with type 2 diabetes, but may include a combination of diet and exercise regimens and oral medication (such as metformin). In some cases, insulin is prescribed as well.

DEMOGRAPHICS More than 100 million Americans live with T2D or prediabetes, including an estimated 5,000 new cases in youth per year. WHAT IS DIABETES? A Guide for Counseling Services 7

Other Forms of Diabetes Other forms of diabetes exist which cannot be characterized exactly as type 1 or type 2. These forms are more rare, but display similar symptoms to type 1 or type 2 diabetes. Two common examples are MODY (Maturity Onset Diabetes of the Young), a monogenic form of diabetes that occurs most often in adolescents and young adults, and LADA (Latent Autoimmune Diabetes in Adults), which has similar causes to type 1 diabetes but with a delayed and more gradual onset. Treatment of these rarer forms of diabetes can vary by individual, ranging from diet and exercise regimens to full insulin therapy. Importantly, when a patient that is truly insulin-dependant is misdiagnosed or not prescribed insulin, they can be in danger of developing DKA.

Medications in Diabetes Management Insulin

The body needs the hormone insulin to allow sugar (glucose) to enter cells and produce energy. Insulin regulates blood glucose levels before, during, and after meals. With the exception of some new insulin products that can be inhaled, most insulin formulations must be delivered subcutaneously via injection or pump. Insulin is necessary in type 1 diabetes, and can be a beneficial therapy in type 2. Side effects of insulin include low blood sugar and weight gain. SGLT-1 and SGLT-2 Inhibitors

SGLT inhibitors are oral medications that reduce glucose absorption in the kidneys and intestines, causing more glucose to exit the body in urine. Previously they have been used to treat type 2 diabetes, but use among patients with type 1 is increasing. They can be used as an adjunctive therapy alongside insulin, lowering blood sugars overall and helping with . Importantly, the use of SGLT inhibitors can increase the risk of DKA in patients with type 1 diabetes. Other Medications

A variety of oral medications are used to treat type 2 diabetes. These include medications that increase the body’s sensitivity to insulin (e.g. metformin, thiazolidinediones), and stimulate the pancreas to secrete more insulin (e.g. sulfonylureas, meglitinides). DIFFERENTIATING BETWEEN T1D & T2D A Guide for Counseling Services

Differentiating Between T1D and T2D DIFFERENTIATING BETWEEN T1D & T2D A Guide for Counseling Services 9

T1D • Autoimmune disease • Formerly called “juvenile” or “insulin dependent” diabetes • Affects about 5% of all people living with diabetes • Most commonly develops in adolescents, but can develop at any age • Body produces little to no insulin • Insulin therapy is necessaryT1D • Cannot be prevented or cured

Both Type 1 and Type 2 • Significantly increase a person’s long-term risk of blindness, heart disease, foot/leg amputation, failure, and stroke • Increase risk for depression, eating disorders, anxiety, and other mental health issues • Tend to be misunderstood by the public and media, leading people to feel stigmatized, shamed, or isolated

T2D • Metabolic disease • Formerly known as “adult onset” or “non-insulin dependent” diabetes • Affects about 95% of people living with diabetes • Most commonly develops in older adults, but can develop at any age • Body is resistant to insulin • Management can includeT2D oral agents, diet and exercise, and/or insulin therapy • Can sometimes be prevented with lifestyle adjustments DIFFERENTIATING BETWEEN T1D & T2D A Guide for Counseling Services

Glossary of Terms

Basal/Bolus • Refers to two different types of insulin delivery Basal: keeps blood sugars stabilized throughout the day and at baseline • Done either through continuous drip of fast-acting insulin via an insulin pump, or through an injection of long-acting insulin • Will not prevent changes in blood glucose levels in responses to ingesting carbohydrates Bolus: a larger dose of short-acting insulin • Done either through an insulin pump or injection • Used to prevent a blood sugar spike after meals, or to ‘correct’ an already high blood sugar

Blood Sugar (AKA blood glucose, blood, bg) • The concentration of glucose in the blood. The sugar in the bloodstream is carried to all cells in the body to supply energy

Burnout • A state in which a person with diabetes is depressed, tired, or fed-up with managing their diabetes, and may ignore their management for a period of time

CGM (continuous glucose monitor) • A small, wearable device that tracks blood glucose levels (via interstitial fluid) 24/7 • Alerts when blood glucose levels are high or low and indicates trends • Inserted by the individual every 7-10 days with a device that places a small sensor under the skin, with a transmitter attached to the skin surface with tape • Blood glucose readings are transmitted every 5 minutes to a receiver or mobile app DIFFERENTIATING BETWEEN T1D & T2D A Guide for Counseling Services 11

DKA (Diabetic ) • A serious, potentially life-threatening of diabetes in which the body produces high levels of blood acids called ketones • Occurs when the body does not have enough insulin and cells don’t have the sugar they need for energy. This results in the body breaking down fat and muscle for energy, producing ketones (fatty acids) in the bloodstream, causing DKA • DKA is often associated with the presence of , however DKA can also occur while blood sugars are “in range” an occurrence known as euglycemic DKA

Endocrinologist (AKA Endo) • A doctor who specializes in the treatment of disease of the endocrine system including diabetes

Glucagon • Administered in the event of severe hypoglycemia • Glucagon is a hormone produced by the pancreas that stimulates the liver to break down glycogen (storage of glucose) into glucose. This glucose is released into the bloodstream, raising blood glucose levels • When glucagon is used, 911 should be called DIFFERENTIATING BETWEEN T1D & T2D A Guide for Counseling Services

Hypoglycemia (AKA Low Blood Sugar) • A low concentration of glucose in the blood (typically below 70 mg/dL) indicates the body’s overreaction to administered insulin • It can cause immediate symptoms including, but not limited to: • Blurred vision, dizziness, poor concentration, sweating, shaking, headaches, anxiety/irritability, nausea, hunger, difficulty concentrating, sudden changes in behavior • Some symptoms can be more severe, and can include the following: • Seizures/convulsions, loss of consciousness, inability to eat or drink

Hyperglycemia (AKA High Blood Sugar) • A high concentration of glucose (typically above 140 mg/dL) indicates insufficient insulin • All people with T1D have highs (perhaps often) • It can cause immediate symptoms including but not limited to: • Extreme thirst, , blurred vision, frequent urination, stomach pain, nausea, increased hunger, confusion drowsiness, sweating, and difficulty concentrating • Consistent high blood sugars run the risk of complications: • Diabetic retinopathy (eye disease), nerve/kidney damage, loss of limbs,

Insulin • A hormone produced in the pancreas, which regulates the amount of glucose in the blood • Enables sugar, or glucose, to enter cells in order to produce energy Ketones • Byproducts of the breakdown of fat in the body for energy • People with diabetes (type 1 especially) are encouraged to check for ketones via an at-home blood or urine test when sick or if their blood sugar has been high/out of range • While ketones typically occur in conjunction with hyperglycemia, they can also be present and dangerous with a blood sugar that is “in range”, especially when using SGLT inhibitors • The presence of ketones at high levels does not necessarily indicate DKA, but does require immediate intervention DIFFERENTIATING BETWEEN T1D & T2D A Guide for Counseling Services 13

• Ketones can also be present at lower levels in someone adhering to a strict ketogenic (high fat, very low carb) diet

MDI (multiple daily injections) • Insulin regimen consisting of multiple injections per day • Low-tech but convenient alternative to insulin pumps • Individuals may take anywhere from 2-10 injections daily depending on their diabetes management plan

Meter (glucometer) A blood glucose meter is a medical device for which tests the concentration of glucose in a person’s blood

Insulin Pens Alternative to syringe­—a reusable or disposable device containing a cartridge of insulin to be administered manually using a needle

Insulin Pump A wearable device, often visible to others, that administers insulin through a cannula or needle under the skin. To prevent infection the insertion site is changed every 2-3 days. A needle is inserted by the patient leaving a catheter under the skin when removed.

Test Strips Small, disposable plastic strips used with a meter to determine the concentration of glucose in a person’s blood. A person with diabetes will prick their finger, squeeze out a drop of blood, and put it on the test strip in order to determine their blood glucose level.

T1D or T2D Shorthand terms to refer to type 1 or type 2 diabetes LIVING WITH TYPE 1 DIABETES A Guide for Counseling Services

Living with Diabetes LIVING WITH TYPE 1 DIABETES A Guide for Counseling Services 15

Diabetes is a lifelong disease that requires constant vigilance, management, and awareness.

Diabetes regimens require near constant attention, frequent modifications, and can often result in a fluctuating feeling of overall well-being. A person living with diabetes can spend approximately 1-2 hours per day actively managing their diabetes. LIVING WITH TYPE 1 DIABETES A Guide for Counseling Services

People living with diabetes must be aware of the interaction of diabetes with nearly every aspect of their life including:

Sleeping, Eating, Exercising, Work, Relationships, School, and Traveling

Diabetes management can also be physically challenging, frustrating, and uncomfortable. Due to the pervasiveness of diabetes management in day-to-day life, it can quickly complicate work, social, and romantic relationships. Every day is different. The fear of diabetes interrupting an individual’s schedule is often the most difficult.

Young adults living with diabetes can often feel overwhelmed and like they are a burden on others, which can lead to: Anxiousness, Depression, Hopelessness,

Loneliness, Isolation

Peer support makes a difference! Encourage young adults to get involved in a peer support group, in person or online. 74% of young adults said that being involved in a CDN Chapter has helped them feel more empowered to manage diabetes on their own. (Source: CDN 2020 Young Adult Survey) LIVING WITH TYPE 1 DIABETES A Guide for Counseling Services 17

FEAR DOESN’T WORK!

Research shows that focusing on long-term complications as a scare tactic to ensure compliance is counterproductive. The very real possibilities of short- term complications including DKA, severely low blood sugar, or seizure can cause additional anxiety.

Self Advocacy

Limited understanding about diabetes from the general public/media can lead to advocacy fatigue from hearing offensive comments and constantly educating others about their disease. As a healthcare provider, being educated about diabetes helps young adults feel supported.

Empowering Patients

Unfortunately, people with diabetes often hear about how diabetes can limit their lives. Empowerment-focused language from healthcare providers can make a big difference. • Engage the student as being their own best advocate, as they are the expert in their own care! • Partner with their care team as an additional source of support for their diabetes on campus. • Refer out to clinicians in your area for specialist care. • Use CDN as a resource to build on your knowledge of diabetes care, management, and support. DIABETES AND MENTAL HEALTH A Guide for Counseling Services

Diabetes and Mental Health The Hidden Struggle of Diabetes Management DIABETES AND MENTAL HEALTH A Guide for Counseling Services 19

Type 1 diabetes (T1D) is considered one of the most psychologically and behaviorally demanding chronic conditions, in part because almost all of the management is the daily responsibility of the patient.

When a student with T1D presents for evaluation, it is important to consider both how well managed their diabetes is and their mental health. Like all students transitioning to college, students with T1D are navigating newly found independence. However, they have the additional burden of handling an often stressful and challenging chronic illness. Adolescents and young adults with T1D are the age group at highest risk for poor management of diabetes and its complications. Behavioral health support is often key to preventing serious health events, even in students without a psychiatric diagnosis.

Key Takeaways: Individuals with diabetes are at a higher risk for depression, which can contribute to decreased adherence to diabetes management. Mental health care providers can play a critical role in a person with diabetes care team.

Depression For some students with T1D, struggling to maintain blood sugars can lead to feelings of hopelessness and helplessness. The transition to college is a stressor that often precipitates depression, and may put college students with T1D at particular risk. There is evidence that individuals with diabetes are in fact at higher risk for depression. The extent to which a college student has access to resources and mental health professionals who are knowledgeable about T1D may mitigate that risk. Symptoms of depression often contribute to decreased diabetes self-management behaviors. As a result, high blood sugar levels may occur more often in a student with T1D and depression. DIABETES AND MENTAL HEALTH A Guide for Counseling Services

Any treatment for depression needs to include: • Regular assessment of blood sugar ranges, self management behaviors (checking blood sugar levels) • Behavioral activation • Sleep hygiene • General self-care Cognitive restructuring can be used to address negative beliefs about the impact of diabetes on both immediate well-being, long-term health, and one’s ability to meet life goals. This can be difficult for the mental health clinician because of the very real risks and challenges of living with diabetes. It is a good idea to consult with the student’s medical team, if possible, for an outside perspective on that particular individual’s diabetes management and risk for immediate and long-term complications. Mindfulness and acceptance techniques may be useful approaches in addressing the helplessness surrounding living with T1D.

20–33% Estimated prevalence of depression in youth with T1D compared to 7% in those without diabetes. For major depressive disorder, having T1D was associated with more protracted depressive episodes and a higher recurrence rate in the long term.

A useful cognitive reframe is one of managing diabetes as opposed to controlling it. Diabetes is like a toddler. Just when you think you have it managed and under control, things change unexpectedly and you have to adapt your approach. When a student with T1D states they believe they are doing all of the ‘right’ things and their blood sugar is still out of range, it is important that they see their healthcare team as supportive rather than punitive. The mental health care provider can play an important role in encouraging and facilitating collaboration with campus healthcare staff, diabetes nurse educators, and endocrinologists. Challenging expectations of perfection is critical for the mental health of anyone living with T1D.

BURNOUT VS DEPRESSION While students with T1D are at higher risk for depression, many more are at risk for diabetes burnout. Burnout is a term for a state in which someone with diabetes has an accumulation of distressed feelings, grows tired of managing their condition, and can be at the point of giving up on diabetes care. This may manifest as ignoring diabetes, and related tasks, for a period of time. DIABETES AND MENTAL HEALTH A Guide for Counseling Services 21 DIABETES AND MENTAL HEALTH A Guide for Counseling Services

Most people with T1D know that to stop taking insulin altogether could have serious health consequences—which could be life threatening. A person with burnout will show a decrease in self-care behaviors such as checking blood sugar, adjusting insulin doses, or changing insulin pump sites. A college student in more severe burnout may cancel medical appointments or run out of supplies. In addition, a person in a state of burnout will likely experience some of the following: • Strong negative feelings about diabetes (e.g. frustration, anger, sadness, hopelessness) • Feeling controlled by their diabetes—feeling it limits/prevents them from doing things or achieving certain goals or is likely to do so in the future • Frequent worry about long-term complications but without motivation to try to prevent them and a sense that complications are inevitable • Isolation, or feeling alone with diabetes • A feeling that no matter how hard they try, they cannot manage their blood sugars Mental health professionals are in a prime position to distinguish between diabetes burnout and depression in a student with T1D. Depression and burnout are not necessarily mutually exclusive. People with T1D can have depressive symptoms and burnout as well. DIABETES AND MENTAL HEALTH A Guide for Counseling Services 23

Many aspects of burnout, such as hopelessness and social isolation, overlap with depression. In addition, physiological symptoms of depression can also be the result of recurrent high blood glucose levels, like feeling lethargic, fatigue, difficulty sleeping, and difficulty concentrating. The key to distinguishing between diabetes burnout and depression is to determine the extent and degree to which symptoms are specific to diabetes. For example, high blood sugar leads to fatigue and weight loss (both possible indicators of depression). Blood sugar related fatigue can lead to low interest in pleasurable activities, which also overlaps with depression. When a student presents with suspected burnout, a careful screening to rule out depression should always be conducted. Since 2009, the U.S. Preventive Services Task Force recommends annual depression screening by primary care providers for all 12–18 year olds. Mental health professionals who specialize in treating diabetes further urge for annual depression screening in this high risk population for all adolescents and young adults. Standardized screening measures for depression can be used and similar measures exist for screening for burnout. Differentiating between burnout and depression can be a bit of a ‘chicken or the egg’ situation. A mental health clinician is ideally situated to make the distinction and assist the student moving forward. When depression precipitates a decline in diabetes care, it is important to focus first on treating the depression—both with therapy and medication as needed. Once the depression has started to remit, therapy can resume a more diabetes- specific focus. Many of the cognitive behavioral tools used for general depression can be translated to diabetes. For example, cognitive restructuring to address hopelessness and a lack of sense of control over diabetes, problem solving to reduce the burden of diabetes management, assertiveness training to better communicate needs related to having diabetes, and SMART goal setting and tracking.

KEY TAKEAWAYS: Most people with diabetes experience burnout at some point(s) in their lives. Depression and diabetes burnout are not necessarily mutually exclusive. The key to distinguishing between them is to determine the extent to which symptoms are specific to diabetes. DIABETES AND MENTAL HEALTH A Guide for Counseling Services DIABETES AND MENTAL HEALTH A Guide for Counseling Services 25

Anxiety Being anxious just enough about the possible immediate and long-term negative consequences of poorly managed diabetes can be a useful motivator to engage in the necessary behaviors to manage blood sugar more effectively. Unfortunately, too much anxiety can interfere with diabetes management and everyday functioning. Anxiety about low blood sugar can lead to the person with diabetes keeping their blood sugars above target range. Symptoms of low blood sugar can include sweating, dizziness, shakiness and trembling, difficulty concentrating, and even passing out. Sitting in a lecture and taking notes can be negatively influenced by a low blood sugar, not to mention exams, presentations, social plans, or playing in a big game. Anxiety about long-term consequences of elevated blood sugar may lead to nearly obsessive management of diabetes, including: • Checking blood sugar far more often than recommended • Avoiding activities such as travel or exercises out of fear of hypoglycemia • Avoiding any change in routine such as eating out or eating at a different time because it will impact their carefully managed blood sugar This kind of pervasive anxiety about diabetes and overly intensive management can lead to exhaustion and burnout. In either case, addressing anxiety in diabetes will involve a good deal of cognitive work around anxious thoughts and beliefs. This might include weighing actual versus perceived risk. For example, what is the evidence that this particular person will develop long term complications or have a severe low blood sugar? This will be different for each individual and highlights the importance of communication with the student’s medical providers to gain an accurate understanding of their diabetes risks. DIABETES AND MENTAL HEALTH A Guide for Counseling Services

Other cognitive behavioral approaches to anxiety are also useful for diabetes related fears and worries. For example, the person who avoids activities for fear of a low blood sugar might be encouraged to build a hierarchy for gradual exposure to activities of increasing anxiety. The focus is on helping them to feel in control of diabetes to a realistic extent without allowing diabetes to control them to an overly restrictive degree.

Much of the work for the individual with anxiety and diabetes revolves around helping them to be careful without being overly cautious. Problem solving is an excellent skill to teach—encouraging students to generate options to address stressful situations in ways that produce less anxiety for them.

KEY TAKEAWAYS: While a little bit of anxiety can be beneficial to a person with diabetes, too much can interfere with diabetes management and everyday functioning. Anxiety about low blood sugar can cause a person with diabetes to keep their blood sugar above target range to prevent lows. Anxiety about long-term consequences of elevated blood sugar can lead to obsessive management and inhibit a person’s day-to-day life. DIABETES AND MENTAL HEALTH A Guide for Counseling Services 27

ADHD Attention Deficit Hyperactivity Disorder (ADHD) with its accompanying executive function deficits can pose a unique challenge to students with T1D. The person with diabetes is responsible for the myriad daily tasks aimed at keeping blood sugars within a desired range. For children and younger adolescents, these responsibilities are shared with parents and other caregivers. The extent to which a high school student takes responsibility for his or her own diabetes may vary depending on their ability to do so and ADHD may play a role. Some studies suggest a 1.5 fold increased risk for ADHD in T1D. The stress of transition to college and having to take on increased responsibility, not only for diabetes management but also for managing academic work and other daily tasks can easily overwhelm a student with T1D and ADHD. A college student with T1D and ADHD may present to the college counseling center because he or she is struggling in one or all of these areas. Grades, blood sugar management, or general self-care may suffer. A mental health professional is uniquely able to do an assessment of how ADHD impacts self-care, including diabetes management. While screening for depression is routine in some diabetes clinics, far fewer ask about ADHD or learning disabilities to address their impact on diabetes management. This may be the first time the student has made the connection between their ADHD and their ability to manage their diabetes, or possibly even the first time they have ever been screened for ADHD. DIABETES AND MENTAL HEALTH A Guide for Counseling Services

A solid working knowledge of diabetes management tasks will allow mental health professionals to help the student with T1D and ADHD to identify and address barriers to self-care. For example, students with ADHD and diabetes may become easily habituated to the alarms of an insulin pump such that they ignore important alerts. They may have difficulty planning ahead or keeping track of time to know when they are due to change an insulin pump site and then find they haven’t left themselves enough time in the morning to change a set and get to class on time. Helping to identify the ways in which ADHD impacts their care, teaching them to utilize tools useful for ADHD in general, and adapting those tools for diabetes management will be incredibly valuable to them. At the same time, ensuring they have needed academic supports for ADHD is an important part of relieving stress and allowing them the mental space and energy they need to manage diabetes. A referral for medication evaluation and consultation may also be needed.

KEY TAKEAWAYS: ADHD can make it difficult for a person with diabetes to effectively manage their diabetes, and balance it with other aspects of their life. A person with both diabetes and ADHD may need help identifying the ways in which ADHD impacts their care and adapting tools specific to them to work for diabetes management. Academic support and accommodations for ADHD can help free up the mental space and energy to better manage their diabetes. DIABETES AND MENTAL HEALTH A Guide for Counseling Services 29

Disordered Eating Studies suggest that disordered eating behaviors are more likely to occur in those with T1D. T1D management requires behaviors which could lead to disordered eating such as attention to food portions (especially carbohydrates) and weight. The most commonly reported disordered eating behavior is one in which insulin is intentionally restricted to induce calorie purging. This is often referred to as ‘diabulimia’. It is important to note that not all of those with T1D restrict insulin and may meet classic criteria for or . ‘Diabulimia’ is not a formal diagnosis but a term coined by laypeople and the media. When people with T1D refer to eating disorders, it is likely that they will use this term. Insulin is required to maintain the health of people with T1D. Those who restrict it are at high risk for acute and long-term medical complications. For example, (DKA) occurs when blood glucose levels remain elevated for a prolonged period with relative absence of insulin in the bloodstream. DKA is a medical crisis that often requires intensive care treatment and can be fatal if left untreated. People with T1D who restrict insulin are also at greater risk for developing diabetes-related eye disease, , and nerve damage. Lastly, insulin restriction has been shown to convey a three-fold greater risk of early mortality. For all of these reasons, disordered eating behaviors in T1D present as a serious health risk and should be identified as early as possible. Eating disorders in T1D become more prevalent in the late teens and early 20’s, making college counseling centers a prime resource for helping to identify and treat this complex problem. WARNING SIGNS OF DISORDERED EATING BEHAVIORS IN T1D • Unexplained elevations in blood glucose and A1C values* • Concerns about weight and body shape** • Change in eating patterns, which may include finding evidence of dietary restriction during the day and binge eating in the evening • Intense exercise (sometimes associated with frequent low blood sugars) • Repeated problems with DKA* • (skipping menstrual periods) * Specific to disordered eating coupled with insulin restriction ** Note that there is not one particular body size that should trigger concern. A person can have an appearing healthy body weight but still be experiencing medically significant eating disorder symptoms. DIABETES AND MENTAL HEALTH A Guide for Counseling Services

The few studies that have examined treatment effectiveness for eating disorders in T1D report that, compared with patients without T1D, those with eating disorders and T1D had higher treatment dropout rates and lower rates of recovery. It may be that patients with T1D require longer and more intensive treatments compared with those without T1D. It is also likely that diabetes- specific adaptations need to be made to research-supported treatments originally designed for patients without T1D. • There is a higher prevalence of disordered eating behavior among adolescent/young adult women with T1D with rates up to 49%. They are 2.4 times more likely to have eating disorders than women without T1D • One study found that 11.5% of those with T1D had diagnosable eating disorders, and another 13.5% had sub-threshold disordered eating behaviors • Boys with T1D are twice as likely to report concerns about body development than peers without a chronic illness • Insulin restriction is the leading method of purging among teenage girls with diabetes, occurring up to 15–40% Treatment teams, loved ones and those who are struggling themselves need to know that people can and do recover but may need treatments tailored for their diabetes. Clinical consensus guidelines for the treatment of eating disorders in T1D are based on the agreement of expert clinicians rather DIABETES AND MENTAL HEALTH A Guide for Counseling Services 31

than empirical support. A multidisciplinary team approach to treatment is essential for both eating disorders and diabetes treatment and should include an endocrinologist, a nurse educator, a dietician with eating disorder and/ or diabetes training, and a psychologist or social worker to provide intensive individual therapy. A may also need to be added to the team for psychopharmacologic treatment. Campus health centers should develop referral and collegial relationships with providers representing these disciplines even if they practice outside of their system. Helping patients to anticipate treatment challenges may build trust and decrease treatment dropout. At the very start of treatment, most patients experience rapid weight gain associated with improved blood sugars. Patients should be reassured repeatedly that this is from fluid retention or ‘insulin ’ and will resolve. Because patients with eating disorders are extremely sensitive to body shape and weight changes, this rapid weight gain can be frightening. In fact, they may reveal that this triggered relapse in their past. Once fluid levels have stabilized, patients’ ongoing concerns about weight must be taken seriously. Insulin acts as a growth hormone, so some weight gain is to be expected in those with T1D. When patients attempt to lower their blood sugars and experience unwanted weight gain unrelated to fluid, their frustrated attempts to lose the weight may be another risk for relapse. A more dangerous challenge can be tempering the patient’s perfectionism. Once motivated to recover, some patients try to achieve as close to target blood sugars as quickly as possible. Such a rapid drop, however, can be quite dangerous­­—placing people at risk for diabetes complications such as eye, kidney, and nerve damage (referred to as ‘treatment-induced complications’). In order to mitigate this risk, both patients and treaters must work toward gradual blood sugar improvements over time. Moving more slowly in this way may also result in decreased severity of insulin edema. Having a team of supportive and nonjudgmental professionals who are willing to collaborate both amongst themselves and with the individual patient in navigating these challenges is critical.

KEY TAKEAWAYS: People with T1D are more likely to struggle with disordered eating. ‘Diabulimia’ is when a person with diabetes intentionally restricts insulin to induce calorie purging. Eating disorders in people with T1D often occur in the late teens and early twenties. ‘Diabulimia’ and disordered eating in people with T1D can cause serious health consequences or death. ADDITIONAL RESOURCES A Guide for Counseling Services

Additional Resources ADDITIONAL RESOURCES A Guide for Counseling Services 33

For More Information on Diabetes and Mental Health…

The American Diabetes Association (ADA) and the American Psychological Association (APA) have partnered to provide trainings for licensed mental health professionals interested in providing mental health care to people with diabetes. To learn more, visit: apa.org/health/emphasis/diabetes.aspx

The ADA released the first psychosocial recommendations for medical providers in November 2016. To learn more, visit: • Diabetes.org • beyondtype1.org/mental-health • behavioraldiabetes.org

Looking for Further Training?

Relias Academy offers a continuing education course for behavioral health professionals looking to better understand diabetes impact on clients. Search for “Relias Academy: Overview of Diabetes for Behavioral Health Professionals”. ADDITIONAL RESOURCES A Guide for Counseling Services

Highlighting Our Contributors: Thank You to Those Who Made This Possible!

Dr. Daphna Shiffeldrim, MD, MPH, is a Child, Adolescent, and Adult Psychiatrist in private practice in Manhattan NY. She is a Clinical Instructor in at Weill Cornell Medical College and an Assistant Attending Psychiatrist at New York Presbyterian Hospital. She is herself a type 1 diabetic since the age of 6 years and has personal, clinical, and research experience in the field of mental health and T1D. In her practice, she specializes in working with this unique population.

Dr. Ann Goebel-Fabbri worked for 16 years as a clinical psychologist at Joslin Diabetes Center and an Assistant Professor in Psychiatry at Harvard Medical School. Her work involved teaching, research, and treatment focused on eating disorders in type 1 and type 2 diabetes. She has published numerous research papers and a recent book on recovery from eating disorders in type 1 diabetes. She currently runs her own practice in which she treats individual patients and consults to healthcare teams. Her work has been featured in the popular media, including BBC Radio, Good Morning America, CNN, and the New York Times.

Dr. Ellen O’Donnell is a Staff Psychologist in the Learning and Emotional Assessment Program (LEAP) and the Outpatient Child Psychiatry Dept. at Mass. General Hospital for Children. Dr. O’Donnell specializes in neuropsychological assessment of children and adolescents with learning, emotional, and behavioral concerns. She has a particular interest in working with children and adolescents affected by both medical illness and developmental or learning disabilities. In addition to assessment, she provides outpatient therapy to patients with chronic medical illness using a cognitive behavioral/behavioral medicine approach.

And a Thank You to Our Reviewers

Dr. Mark Heyman, PhD, CDCES

Dr. Diana Naranjo, PhD ADDITIONAL RESOURCES A Guide for Counseling Services 35 MORE FROM THE COLLEGE DIABETES NETWORK A Guide for Counseling Services

More from us at CDN Building a more supportive community on campus

Help CDN further support college campuses by creating an educated environment with respect to knowledge about T1D and the implications this has on college life and beyond. MORE FROM THE COLLEGE DIABETES NETWORK A Guide for Counseling Services 37

collegediabetesnetwork.org/resource-hub

Have the information students need • Join our newsletter via our website: collegediabetesnetwork.org • Download digital copies of our Off to Work, Off to College, and Newly Diagnosed guides on our website to have available for students who need them • Get to know your local resources for young adults with diabetes to collaborate and educate

Support a CDN Chapter at your school • Encourage students with diabetes to start a Chapter on campus • Serve as a Staff Administrator Advisor for the campus Chapter on your campus • Connect with an existing Chapter to support their meetings

CONNECT WITH OTHER ADMINISTRATIVE DEPARTMENTS • Check to see if your campus Disability Services office has CDN’s Disability Services booklet • Check to see if your campus Counseling Services office has CDN’s Counseling Services booklet • Connect with other departments such as the office of enrollment to see if Off to College Booklets are being offered

SPREAD THE WORD ABOUT CDN • Refer a colleague to CDN’s programs and download CDN materials MORE FROM THE COLLEGE DIABETES NETWORK More Resources from CDN

OFF TO YOU'VE GOT THIS! WORK NEWLY DIAGNOSED WITH WITH DIABETES TYPE 1 DIABETES

GUIDE FOR YOUNG PROFESSIONALS GUIDE FOR YOUNG ADULTS

OFF TO COLLEGE OFF TO WORK NEWLY DIAGNOSED

The Off to College The Off to Work guide After noticing a large program aims to provide is a comprehensive gap in education for quality information resource aimed at the increasing number about transitioning helping young adults of young adults from high school to with diabetes transition diagnosed with type campus life for young into professional life. 1 diabetes between adults and their families. It covers topics like 17-25, CDN developed Our Off to College navigating insurance, a comprehensive guide guides for students and disclosing your condition specifically for this caregivers touch on a to your employer, and population. This resource variety of topics such as requesting professional addresses everything finding a new provider, accommodations. you need to know about talking to friends about navigating T1D as a diabetes, registering for Guide Contents: young adult! accommodations, and so • Disclosure to much more. employers Guide Contents: • Building a resume • Insulin dosing Guide Contents: • Interviewing • Carb counting and • “Looking at Schools” • Accommodations at exercise guide work • Finding your • Family • Traveling healthcare team communication plan • Approaching stigma • Mental health • Registering for and self-stigma • Health insurance & accommodations • Navigating insurance your rights • Talking with • Pumps, meters, roommates and CGMs peers • Dating and diabetes • Drinking and • Drinking, drugs, and diabetes diabetes • Sexual Health SOURCES https://www.mayoclinic.org/diseases-conditions/type-1-diabetes/ symptoms-causes/syc-20353011?p=1 https://medlineplus.gov/ency/article/000305.htm https://www.mayoclinic.org/diseases-conditions/diabetes/in-depth/ diabetes-treatment/art-200440844 https://www.webmd.com/diabetes/how-sugar-affects-diabetes#2 https://www.cdc.gov/diabetes/managing/manage-blood-sugar.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4380133/ https://www.cdc.gov/diabetes/managing/problems.html https://JDRF.org https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes- statistics-report.pdf 50 Milk Street, 16th Floor, Boston, MA 02109 [email protected] | collegediabetesnetwork.org