Erin Akers suffered for several years through the condition, even bringing herself to the brink of death. Her fight back to better health gave her the inspiration to begin a diabulimia helpline. She also wants to raise awareness to providers so they will understand the grip this real condition can have on patients.

By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net

Erin Akers had enough. She was tired of her daily diabetes routine and being reprimanded by her doctors about her weight. 

Akers was 14 and had been type 1 for four years when she decided to start omitting her required insulin injections. Although this led to her losing weight rapidly, and gave her a mental break from diabetes, what she didn’t realize was that she was becoming diabulimic in the process.

The term diabulimia is a combination of the words diabetes and bulimia, and it’s defined as a condition where people with type 1 diabetes withhold their insulin requirements for longer periods of time so they can lose weight. Of course in doing so, these people run the risk of going into diabetic ketoacidosis (DKA).

Diabulimia is a condition that affects mostly women. And, as with other well-known eating disorders, it may take several years for diabulimia sufferers to recognize their problem and get proper treatment.

Akers’ road to recovery was an evolutionary process and one filled with multiple acute health episodes including: numerous trips to the ER; a spinal infection; and a near-death experience where she actually died before being resuscitated. It was that last episode which led her to accept how severe her condition was and begin the work to get back to better health.

The term diabulimia has not been fully accepted into the medical lexicon, and it leaves providers with no true clinical guidance in how to treat it. Akers faced a lack of understanding when she saw an eating disorder specialist who did not provide further treatment, even after Akers told the specialist she was withholding insulin.   

And while there has been a lack of treatment guidance by the overall medical establishment, the American Association of Clinical Endocrinologists (AACE) gave the condition credence by publishing information and offering resources  on it last year.

After getting well and finally entering recovery from her eating disorder, Akers decided she wanted to let other people affected by the condition know that there were others out there and support was available. 

This is why she started a diabulimia helpine. Simply named the Diabulimia Helpline, the hotline is (425) 985-3635, and it`s open 24 hours a day and 7 days a week for people to call. It’s staffed by volunteers who have suffered from the condition.

DiabetesCare.net recently talked with Akers about her long-time battle with diabulimia, how she created the helpline, and the hope of helping others in need.  

DiabetesCare.net: Talk about your daily regimen when you began skipping/reducing your insulin requirements? How many injections were you taking a day?

Akers: There wasn’t really any set number or system. I started pushing my body as far as it would go, to the point of DKA, past the point of nausea, past the point of sleeping for 16 hours a day till I couldn’t take it anymore and then I’d take my shot. Sometimes I wasn’t so good at gauging how far my body could go. That’s why by the time I graduated high school I had almost two-dozen hospital visits; and a whole host of physical complications.

DiabetesCare.net: What was your relationship and routine with food during this period? 
 
Akers: I certainly didn’t have a routine with food; a normal meal schedule was out the window. Sometimes, because my body had been in starvation mode I’d be ravenous and I’d  eat large amounts of bad food at one time. For example, I once ate a full size bag of potato chips and one of those extra large giant bags of Skittles you put out in like a party bowl. Sometimes, I would skip several meals in a row because I was so nauseous the idea of holding down anything more than ice chips was impossible.

DiabetesCare.net: During this period how were you able to keep your condition from your parents?

Akers: I was never a great diabetic so missing a few blood glucose checks or the occasional shot wasn’t surprising.  Then I developed several techniques for faking blood sugars on my meter.  When my mother noticed that I wasn’t refilling my insulin prescription fast enough I just started dumping it.  My sophomore year I had several seizures and everyone’s focus shifted to neurology and no one seemed to notice how many “flu” episodes I was having. 

When my A1c tests started coming back significantly higher than my meter logs indicated they should be, the endocrinologist accused me of being non-compliant and dropped me as a patient. He never mentioned to my parents the connection between my high A1c and major weight loss. 

Eventually my mother, who had struggled with her own eating disorder in college, became suspicious and took me to an eating disorder therapist.  I was completely honest with him about what I was doing and why. When he met with my mother he told her that I did not have an eating disorder, that I was simply a rebellious child.  Finally, when I returned from my first semester of college so sick that I landed in the hospital with a staph infection in my spine, my mother decided that regardless of what the “experts” said, I had a problem and I was going into treatment.

DiabetesCare.net: Can you talk about a particularly scary episode where you endangered your health and had to go to the hospital?                              
                                                                            
Diabulimia Helpline CEO Erin Akers

 
Akers: The summer before my 16th birthday, I was celebrating being free from school by really pushing my body hard and going as long as possible between each dose of insulin. I figured I could sleep my days away without school and get the most bang for my buck. But one night it got bad, fast.

I had been nauseous for almost 36 hours, a feeling that became a near constant for me, but I had stopped being able to keep down even water so I knew it was time to dose. So, I took a full shot of Humalog, but my sugar didn’t budge. I took another full shot and nothing. It didn’t matter what I did, the meter kept reading ‘HI.’ It appears my body was starting to fight back and was becoming insulin resistant—not that I had any idea of this at the time!

I didn’t want to go to the hospital because I knew it would just mean another lecture from the doctors about making sure to be extra-vigilant when I was sick—which is always what they thought when I showed up in the ER—that I was just another sick diabetic whose sugar got out of hand. This is also a common experience with people with diabetes who get the flu.

I tried so hard to fix it on my own, but my ketones were too large and they were rapidly taking over my body. I was so dehydrated I started having hallucination-like experiences. I wasn’t seeing stars, but I wasn’t all there either, talking nonsense. When my parents got home and found me like that they rushed me to the ER. When they did the intake process they asked me a standard question,  about what the date was, and all I could say was, `I know it’s after the New Year.` It was the end of April.

I started slipping in and out of consciousness, and at that point, I don’t remember much else. When I awoke, I was in ICU with defibrillation pads on my chest. When I asked the doctor why, he said my heart rhythm started to give them a little bit of a scare. It was one of mother’s and my scariest moments, but it would be three more years before I even began toying with real recovery.

DiabetesCare.net: Talk about your treatment for diabulimia, including where you went and were you able to find yourself fully recovered after receiving treatment?

Akers: There were several pivotal things that started my transformation towards recovery. The one that sent me to a treatment center was when I was 18 and in college. I was taking such bad care of my diabetes that I contracted a staph infection in my spine that almost killed me. I had to drop out of college, Mount Holyoke in Boston, and be flown home to Seattle Children’s Hospital where I spent a week in a quarantined intensive care unit. I had torpedoed my educational plans, and the future I had been envisioning for myself since I was six.
          
So I agreed to go to an eating disorder treatment center in Florida. I stayed there for 3 months. It really did put a huge dent in my eating disorder, and I was finally on the road to recovery for the first time. But it didn’t last, I broke my leg the day before I was sent home and I fell off the wagon; within a month I was omitting again. I continued to toy with the idea of recovery—on and off the wagon for a year. But that next summer after breaking my leg again I had to have surgery to have some hardware put in.

After that surgery, due to my decreased potassium levels due to not taking my insulin I flat lined. Plain and simple, I died, for 36 seconds, no breathing, no heart rate, no Erin. When I came back to, my mother was in the hall sobbing, my best friend was standing against the hospital wall white as a ghost and there was a nurse sitting on my chest giving me CPR as they readied the defibrillation pads. It was more than a near-death experience; it was an actual death-experience. And there was something inside of me that just knew—if I didn’t get my act together right then and there, the next time there’d be no bringing me back, I’d just be gone. And I knew I didn’t want that. It became a matter of admitting this eating disorder was killing me, or next time it was going to succeed.

DiabetesCare.net: Why the decision to start the helpline?

Akers: It’s pretty straight forward actually. I had been suffering from diabulimia for six years when I was finally ready to admit I had a problem and ask for help. There was no one out there offering advice, support or help of any kind. And I just knew in the pit of my stomach that there was something intrinsically wrong about that. I was so alone during my recovery process and I had to fight through so many battles with the eating disorder world telling me this was a diabetes problem and the diabetes professionals telling me this was an eating disorder problem and no one just saying, this is a problem. I figured there had to be other people out there like me—diabetics with eating disorders—that were struggling and in need of help, even if that help was just someone going through the same battles to talk to, someone who could say, `I understand.`

I didn’t want anyone to go through the same Hell I had gone through alone, and since no one else was doing anything about it, I thought why not me? I figured I’d start an organization that would do it. We were the first organization in the entire world devoted to helping diabetics with the eating disorder, and are still the only non-profit doing so in the U.S.

DiabetesCare.net: The helpline operates a hotline. How does that work? How do you staff it? How quickly are you able to respond back to someone?
 
Akers: We take calls 24 hours a day, 7 days a week. There is no bad time to call and there’s no wrong thing to talk about. I’ve sat on the phone with a girl for 2 hours as she tried to take a shot of insulin, and by God she did get take that shot of insulin. You can call us about anything that has to do with your diabetes, your eating disorder, your body, or how you’re feeling. Our hotline is staffed 100 percent by volunteers; all of whom have had diabulimia and are now in recovery or who has a loved one who suffered with diabulimia.

Since many of the calls that come in are from parents or spouses we decided it was important that they could talk to someone who is going through their aspect of this fight. This ensures that no matter why you’re calling, we connect you to someone who has been where you are, understands exactly what you’re going through, and can help you get to that place that you want to go. We also offer referrals to the right doctor, therapist, or treatment center that is going to be the best fit for you on your journey. And we also have an insurance specialist who will work with you and your family to get you the best possible coverage. While we do have medical professionals on our board of directors, we don’t offer any medical advice to our clients.

DiabetesCare.net: What are your hopes for the helpline?

Akers: In the future I’d like to see Diabulimia Helpline be the one stop shop for those suffering, their families, and clinicians. I’d like to see our database of resources expanded so that no matter what resource or referral you’re calling for or where you’re calling from, we have on file exactly what you’re going to need. I’d like to see us have a hand in increasing the research on the connection between diabetes and eating disorders and guiding its direction. I’d like to see better education for future healthcare professionals, as well as creation of a CME course on the comorbidity of diabetes and this eating disorder. 

Hopefully, there will soon be a forum to bring together leading experts from the psychology and medical fields who can develop a protocol for the treatment of all diabetics with eating disorders. And mostly, I’d like there not to be a need for the helpline at all.

For anyone who needs immediate help, the number for Diabulimia Helpline is: (425) 985-3635. The website has additional information and resources, and anyone can email them at: info@diabulimiahelpline.org.