The Road to Diabulimia Helpline Part 2
By Erin M. Akers
(This is the second of a 2-part article. Part I was featured in our November 2017 ENewsletter and can be accessed here)
With more questions than answers, and more help needed than resources available, I decided to open Diabulimia Helpline in 2010, a 501(c)3 non-profit organization devoted to education, support, and advocacy for diabetics with eating disorders, and their loved ones. Since our one humble Facebook group back in 2008, we now have three separate online support groups (including one just for friends/family members), a 24-hour hotline available via (425) 985-3635, an insurance specialist to walk clients or their loved ones through the complicated world of insurance coverage, a referral service to help people find the right treatment center, doctor, and/or therapist that will be the right fit on their road to recovery, and a client summer workshop series. All services provided to our clients are 100% free of charge; having gone through the recovery process I know first hand that mental health treatment is expensive enough as it is.
In addition to client care coordination and working one on one to find individualized help for each client, our second goal was to set up a Healthcare Professionals Education Program to improve understanding, recognition, and treatment of the disorder to address the incomparable challenges that those with comorbid diabetes and eating disorder have to face. My own recovery fell into relapse because there was no recognition that the eating disorder is intertwined with T1D. Addressing them separately as if they’re not connected is only addressing half the leak flooding your house. I’m proud to say that in January 2013, we did launch that program. Since then we have conducted multiple trainings at five top inpatient eating disorder treatment centers around the country and over a dozen diabetes clinics. If you have a patient that you suspect has diabulimia and are feeling unsure about how to treat them, we also work with programs and providers one-on-one through conference calls and video trainings.
Understanding the basics of diabetes is a good first step, but it is just that, a first step. You also must understand every client’s personal diabetes story. Just like every eating disorder patient who walks through your door has a unique and varied experience with food, so, too, does every diabetic have their own unique story to tell about their disease. Their diagnosis story may be a trauma that they need to work through, for some they have been fighting the ‘diabetes police’ their whole lives (hovering parents who have been practically swatting sugary or high carb foods out of their mouth). Pain is pain, and regardless of the source, these clients are also still just using coping mechanisms as means of harm avoidance. Understanding what part of their disease they may be trying to avoid can be the key for many people with diabetes to turning their relationship and perspective on life with diabetes around.
There are some unique challenges that providers should be ready to treat with this population. Understand that even recovered, people with T1D still face an invisible chronic illness that requires 24/7 attention that will always be there. Diabetes complications incurred during this eating disorder are irreversible; though they may get slightly better in the long term, they’re never going away. We can’t dismiss attention to food values as is done with non-diabetic eating disorder patients. Unlike other forms of purging or starving, the action you’re asking me to re-engage in is asking me to “other” myself from society. An anorexic eating with his family for a meal or a bulimic sitting with her boyfriend after lunch for a movie, is rejoining what it means to be in the normal flow of society, whereas the person with diabetes is once again stepping aside to take a shot or pulling a tubed pump from his or her pants to give insulin for a snack. These are just some of the reasons postulated as to why individuals with T1D show higher dropout rates and poorer treatment outcomes than other patients.1 Plus, keeping these patients in treatment is critical. Patients who restricted their insulin, on average, died 13 years younger than those who didn’t restrict.2 While T1D has a 2% mortality rate and Anorexia Nervosa has a 6.5% mortality rate (not including suicide), AN and T1D together have a 38% mortality rate, 5x greater mortality than AN alone.3
I don’t tell you all of this so you can sit gravely across from your client and fret that their fate is in your hands. Instead I offer you this, at the age of nine – and for many of us much younger – the complications and mortality are drilled into our head from appointment one. By the time our eating disorder has taken hold, it’s just that, a full-fledged mental health disorder, not a choice we’re making to restrict insulin. Yet we face shame from the diabetes and medical community, guilt from our family who has heard all the same lectures, and we find ourselves in a continual spiral that seems to push us further and further into the darkness. Our mortality is placed in front of us at such a young age and told it is ours to take care with as we choose. For those of us who ended up with an eating disorder, there is an overriding feeling of guilt and shame like we deserve to be stuck in these broken bodies; it can make it feel like we somehow don’t deserve that precious gift of life itself. Offer hope. Offer acceptance. Offer understanding. People with diabetes face the same struggles you do, the same struggles your other patients do: they have jobs, lives, families, and mortgages they have to keep in balance and all while also being their own pancreas – a job that pays no money, gives no time off, and offers little to no thanks. It’s easy to develop weird food rules, phobias, or compulsions when your entire life revolves around food. Eat too much – a high blood sugar wakes you, nauseous. Not enough – you can go low and pass out or worse, not wake up at all. Finding people who understood how challenging walking that line can be made all the difference for me. Next year will mark the 10th Anniversary of Diabulimia Helpline opening its very first support group. We have grown from just a cluster of a dozen misfit diabetics struggling to find our place to a global community of thousands where someone is up at all times to support you. Our next big project is November 9th – 11th, 2018; we’re hosting the world’s first diabetes and eating disorder conference. It will be a two-track event, one for patients and one for clinicians; an event that’s literally been a decade in the making. We can’t wait to see where we grow as an organization and mostly how the fields of diabetes and eating disorders continue to grow, individually of course, but hopefully, in collaboration as well.
About the author:
Erin M. Akers is the founder and Executive Director of Diabulimia Helpline , the world’s first non-profit organization dedicated to support, advocacy and awareness for those struggling with diabetes and eating disorders. Erin co-organized the 16 state nationwide March for Health in defense of people’s access to medical care in April, 2016. Erin has written for numerous publications, such as Diabetes Forecast, Diabetes Health, Diabetes Care and the academic journal PLAID. She has also appeared on Huffington Post Live, NBC News, and Discovery Health Channel to discuss diabulimia. Erin is a member of Diabetes Advocates, the American Diabetes Association, Binge Eating Disorder Association, a National Eating Disorder Association partner and an Americans for Access Board member.
- Custal N, Arcelus J, Agüera Z, Bove FI, Wales J, Granero R, Jiménez-Murcia S, Sánchez I, Riesco N, Alonso P, Crespo JM, Virgili N, Menchón JM, Fernandez-Aranda F. Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BMC Psychiatry. 2014 May 16;[14:14]0
- Goebel-Fabbri AE, Fikkan J, Franko DL, Pearson K, Anderson BJ, Weinger K. Insulin restriction and associated morbidity and mortality in women with type 1 diabetes. Diabetes Care. 2008 Mar;31(3):415-9
- Nielsen, S. (2002). Eating disorders in females with type 1 diabetes: An update of a meta-analysis. European Eating Disorders Review, 10, 241–254.