Guest Contributor: Dawn Lee-Akers
Retinopathy, neuropathy, gastroparesis, kidney disease…People with diabetes are already at risk for developing these complications. Why would anyone intentionally increase that risk by not taking their insulin? This is the question that kept running through my mind as my daughter’s A1c kept going up and up. Everyone told us that she was simply a rebellious teenager. Yet, no carrot, no stick, no parenting technique seemed to make any difference. And it never was going to because discipline wasn’t the problem. Erin had an eating disorder commonly known as diabulimia, a mental health disorder where a person with type one diabetes omits or restricts their insulin in order to lose weight.
Life in our house was tumultuous – Erin was loving then hateful, joyous then lethargic and sullen. And she was missing a lot of school from being sick. Dealing with a 24/7 chronic illness is arduous, especially when combined with the stress of adolescence (or the stress of anything – new mom, new job, etc). Was this diabetes or being a teenager? Was our experience normal or was this something else? When the trips to the hospital with DKA started, I knew we had to do something. Erin talked openly with me about a lot of things in her life so I thought I could get a handle on what was going on. What I didn’t know was that eating disorders are very secretive, and there was an entire part of Erin’s life which I knew nothing about. She had become quite proficient at faking good blood sugars on her meter and making it look like she was dosing when she wasn’t. In the doctor’s office she would just shrug when her A1c test didn’t match her meter history. When I noticed that we weren’t refilling her insulin often enough, she started stashing bottles.
By the time Erin graduated high school she had been dropped by two endocrinologists as non-compliant, and somewhat admitted that she was intentionally restricting insulin. I felt like a failure as a mother, and especially as the mother of a child with diabetes. I still had no idea this was an eating disorder; after all even her endocrinologist and a therapist told us it was just rebellion. Nevertheless, we all felt like college would be a healthy fresh start. Unfortunately, she came home from her first semester so sick that she practically went from the airport to the hospital. This time I started doing my own research and came across the term diabulimia which filled me with both relief and dread. The monster that my daughter had been battling for years had a name, but the statistics on prevalence and morbidity were terrifying. People with type one diabetes are 2.4 times more likely to develop an eating disorder than the general population. In fact, multiple studies show that 30%-35% of women with T1D omit or restrict insulin in order to lose weight.
Our search for help proved quite challenging. Doctors had either never heard of it or dismissed it as not real. There were no treatment programs specifically for the co-morbidity of diabetes and eating disorders, and a lot of centers would not even take Erin due to her diabetes. Piecing together information through journals and the internet was equally frustrating. Fortunately, with the help of some wonderful providers Erin found recovery. During her first year of treatment, she started an online support group and heard the same story again and again – frustration finding information, trouble finding help.
So we founded Diabulimia Helpline, a non-profit organization dedicated to support, education and awareness for people struggling with the co-morbidity of diabetes and eating disorders, and their family and friends. In addition to the online support group and one-on-one mentoring for people with diabulimia, we have an online support group for Family and Friends. We have worked with several treatment centers to ensure they have solid protocols for treating this co-morbidity, and we can help you find local providers with this special experience. We have an insurance specialist who can help you obtain treatment authorization and optimize your benefits. We offer pamphlets you can share with a loved one to help start a conversation, and we have academic papers for healthcare professionals. Diabetes and eating disorders can feel so isolating, but we are not meant to take this journey alone. If you are looking for help or information for yourself, a friend or a family member please call us at 425-985-3635 or send an email to firstname.lastname@example.org.
Dawn, along with her daughter, Erin, founded Diabulimia Helpline in order to support and educate those living with diabetes and eating disorders, and their family and friends. The mother of two children living with diabetes, she resides in Seattle, Washington, with her husband.