A little bit more about WAD...

Initial discussions regarding the overall concept of We Are Diabetes began in the fall of 2011. By January 2012, our official website had been launched and we hit the ground running! Since then, We Are Diabetes has offered a unique type of support that doesn't seem to be found anywhere else; one-on-one mentorship, guidance and resources to any type 1 diabetic who may not only be feeling alone, but who may also be suffering from a co-occurring condition like an eating disorder or depression.

We do not claim to have all of the answers, and sometimes getting support isn't about having the right answer. Sometimes the most helpful and impactful kind of support comes from someone who truly understands what it's like to live with such a demanding and (mostly) invisible chronic illness.

Our staff have all dealt with the emotional turmoil that can come from living with type 1 diabetes. They have fought hard to regain their emotional and physical health, and are passionate about helping others regain their identity beyond their diabetes.

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 Giving Thanks

Asha Brown, Founder & Executive Director

e-mail: asha...@wearediabetes.org

Asha was diagnosed with type 1 diabetes when she was 5 years old. Throughout her childhood, diabetes was simply a way of life because her father had type 1 most of his life as well. She didn't mind being a little different than her friends and never had a problem explaining type 1 diabetes to anyone who had questions. In fact, diabetes never created an obstacle in Asha’s life until she was old enough to understand that her weight and body size were not completely under her own control. As a dancer, actress and a fitness instructor by the time she was 17, Asha lived for movement and her body’s ability to feel good in its own skin. After reading many articles and books that gave a daunting account of weight gain associated with insulin resistance and diabetes, Asha felt the first stirring of resentment towards a disease she felt was dooming her to an inability to have the physical strength and shape that she knew she deserved and could achieve. And so she started to omit insulin occasionally when it was “necessary” to get things done.

The obsession with maintaining a healthy size and weight while coping with multiple autoimmune disorders (hypothyroidism, polycystic ovary syndrome, as well as type 1 diabetes) became a full-time job for Asha during high school and college. The lack of support for type 1 diabetics was also disheartening as most of the information discussed in the media dealt with type 2 diabetes. Asha began to omit insulin for the purpose of weight control. She also started to rely on the numbing effect of ommission to drown out the daily anxieties that people with chronic illness often battle against. She felt it was a cruel joke to have such a passion for dance and performing and to have to constantly “take it easy” due to her low blood sugars, or worry that she would have one when she was on stage. Skipping her insulin shots, or taking less than required to cover a meal, became second nature to her, and for years she struggled with the cycles of omitting insulin, binging, restricting and swearing never to do it again.

Asha wrestled, off and on, with symptoms of diabulimia beginning in her sophomore year of high school, but it began to truly take over her life in her freshman year of college. By then, it dramatically affected every single choice she made in her life, her relationships and her daily routines. The effort to keep her eating disorder a secret became all-encompassing. It wasn't until she met the love of her life and was married that she began to consider the idea of seeking treatment for her eating disorder. For years, Asha continued to tell herself that she would stop her dangerous secretive behaviors once she was at her perfect weight. The problem with that, of course, is that there’s no such thing as a perfect weight or a perfect body -- and, therefore, no end in sight. Asha soon realized she had no idea how to live without her eating disorder. And she knew she could never be the wife and life partner to her wonderful husband or truly follow her dreams of performing until she let go of her destructive behaviors.

Asha took her first step towards living fully in her life again when she had an initial assessment made at the Park Nicollet Melrose Center in 2009. She was strongly encouraged to check into the inpatient treatment program that very day due to the severity and danger of her out-of-control diabetes. And with that, she surrendered. She went through a year of treatment, starting with two weeks of inpatient care and then moving to weekly outpatient appointments, and finally monthly. Along with the wonderful support she received from the staff at the Melrose Center, she realized how supportive her family and friends could be once she finally shared her difficulties with them. Her life began to churn once again with passion, discovery and joy.

Asha’s life today is new and very different after finally coming to terms with her disorder. She is no longer imprisoned by the numbers on the scale or the fear of food. After receiving treatment, she returned to teaching yoga, a passion she had enjoyed years ago before her diabulimia took top priority. She performs often in theaters in the Minneapolis area, and delights in exploring and cooking new recipes and foods. She lives very happily with her beloved husband who has been her grounding source of support and continues to give her the courage to fight the odds associated with her type 1 diabetes, her recovery, and reminds her of so many reasons to never give up.

Asha works with families, patients, and health professionals across the USA. She uses her personal experiences with ED-DMT1 to offer hope and support to those still struggling. She also establishes relationships with eating disorder facilities and diabetes organizations across the county to help connect people to appropriate care. Asha has presented at NEDA, AADE, and JDRF, among others. She writes for Diabetes Health, Diabetes Daily, Glu, Insulin Nation, dlife, DiabetesMine, and other websites. She was a member of the ADA Woman and Diabetes Subcommittee and is a member of Diabetes Advocates and BEDA.

Erin Williams, Co-Founder & Client Care Coordinator

e-mail: erin...@wearediabetes.org

Erin was diagnosed with type 1 diabetes when she was 11 years old. As the first and only member in her family to have diabetes, she had never heard of it and did not understand what it meant. Erin had a very hard time adjusting to the disease and preferred to keep it a secret from all her friends. She tried to continue on with her life, behaving as if diabetes was not a part of it. She took care of herself, but put the diabetes in the background as much as she could.

After many hard years of trying to adjust to the disease, Erin slowly began to give up. She gradually started to cut back on her insulin because she preferred running high to dropping low and passing out. Soon she became used to the effects of high blood sugars: constant thirst, fatigue and heavy breathing. This became normal for her. She didn't even notice the "positive" side effect of losing weight until comments from people started coming in. All the encouragement from others, such as, "You look so pretty," "You've lost all that baby weight," and "You're finally looking like a woman," made her feel good, but also made her feel that she had to keep engaging in this destructive behavior. At that time, after only having had diabetes for a few years, none of the terrible consequences were showing up or taking their toll on her body yet, so she didn't realize the real harm in what she was doing. And for Erin, neglecting to take her insulin wasn't about the weight as much as it was about trying to feel "normal." Having diabetes, she felt, kept her from being like everyone else.

By the time she was almost finished with college, she was starting to see the damage the disease was taking on her body. She knew she had to stop but was afraid to tell anyone what she had been doing and didn't know where to get help. She had never met another person with diabetes, let alone someone else who was mismanaging their insulin like she did. After finally telling someone and asking for help, she was admitted to a few eating disorder clinics. None of them helped much; even worse, none of them were even aware of the term diabulimia. They all knew about diabetes and what it was, but they had no idea that Erin needed help managing her insulin intake and testing her blood sugar.

After many fruitless years of seeking help, she realized the hard truth and faced the fact that she may have to do this alone. After college, she really buckled down and created her own recovery program. She worked really hard and had many struggles, but she was able to overcome diabulimia and work through her denial issues of living with type 1 diabetes. Erin credits her strong family ties as the true reason she was able to recover. "People cannot do this alone and I don't want to give that illusion. I was blessed with great parents who not only supported me, but they believed in me and gave me the courage to try to overcome this without much medical help. My dad, at the time, also had incredible insurance. Many people are not fortunate enough to have this," she says.

After struggling on her own for a long time, she came to realize that if she was doing this, then there were probably others who were alone and without help. This is when Erin turned to her friend Jenna. She worked with Jenna to help write one of the first articles ever written about diabulimia. This article came out in SELF Magazine in 2007, and after it was published she got many replies from other type 1 diabetics who were also struggling with diabulimia. Erin realized how hidden this issue is within the diabetic community and that nobody in the medical community seemed to be aware of it. And for the first time, she knew she was not alone.

Erin has now been free of diabulimia for the last 5 years and has an A1C that she never dreamed she would have. She currently lives in Chicago, Illinois, and graduated from Illinois State University. After working in advertising and marketing for several years, she decided to follow her real passion and dream and is now back to school working to become a diabetes educator. Erin believes that recovery is possible and that it can be done if you want it. She truly believes that if you want to recover, it has to come from you; you have to embrace your life as it starts to change. "You can't be afraid of it," she says.

Amy Gabbert-Montag, Executive Assistant

e-mail: amy...@wearediabetes.org

Amy was diagnosed with type 1 diabetes at age seven. Her parents describe her reaction to the diagnosis as positive and mature. Amy and her family adopted a healthy approach to dealing with diabetes. She wasn't afraid to tell others about diabetes and had plenty of support managing her chronic illness. At the age of ten, Amy's three-year-old sister was diagnosed with type 1 diabetes. Because her sister was so young, Amy's parents had to monitor her sister quite closely. Thus, a lot of the responsibility regarding Amy's diabetes management was shifted to herself. The upbeat attitude she had about diabetes quickly began to wane as she grew frustrated with her less-than-perfect blood sugars and her inability to keep them in range. Even at the age of ten, Amy exhibited a lot of perfectionist traits. She was also hyper-sensitive, extremely hard on herself, and always felt guilty about every single thing she did wrong.

Though she had difficulty regulating her blood sugars during this time, it wasn't until the summer before her junior year of high school that Amy started to skip insulin injections in order to lose weight. "I was upset that I didn't make the A honor roll," she recalls. "I thought I could fix myself by losing weight." She soon found that high blood sugars also numbed the relentless anxiety and pressure Amy felt to be perfect. Her last two years in high school were miserable. Her grades dropped, her mood deteriorated and she isolated herself from her family and friends.

Amy attended college close to her home town where her mental and physical health continued to decline. She was often too sick to attend classes, her financial aid was dropped because of her failing grades, and she started to experience blurry vision and burning pain in her feet. After her disastrous first year in college, Amy finally decided to admit to her endocrinologist why her blood sugars were so high. Her doctor immediately referred her to Park Nicollet's Melrose Center, a clinic that specializes in treating diabetics with eating disorders. Amy's path to recovery was not a linear, upward progression; there were many relapses and slip-ups. "My idea of what treatment was supposed to be was very different from reality. I wanted to figure out what was wrong with me and then change my behaviors. I found that the opposite was more effective."

Amy believes there were many contributing factors to her development of an eating disorder. After her blood sugars had stabilized she began to learn how to deal with anxiety and her perfectionist tendencies. She also found she had a hard time naming emotions and managing them. It was through therapy that she learned effective coping skills that lead her away from self-destructive behaviors.

Amy is passionate about debunking the common myths and misconceptions about eating disorders and treatment. Amy has a bachelor's degree in Women's Studies and is currently a volunteer for the National Eating Disorders Association. Her ambitions are to attend graduate school to attain a master's degree in Social Work and to pursue a career in the eating disorder field.


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The material on this website is for informational purposes only and is not intended to constitute or be a substitute for medical advice from a qualified medical or mental health professional. The individuals associated with We Are Diabetes are not medical or mental health professionals. We Are Diabetes does not endorse any specific treatment centers, physicians, healthcare providers, mental health professionals, tests, products, services, procedures, opinions, or other information that are mentioned on the web site.

Always consult your physician or other qualified healthcare or mental health provider for advice, diagnosis and treatment of any health-related matter, including relating to diabetes and/or eating disorders. If you think you may have a medical emergency, call your doctor or 911 immediately.