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This is a continuation of my interview with Erin and Asha from We Are Diabetes.

Recovery from Diabulimia

The recovery process from diabulimia is extremely difficult. A person who has avoided feeling fat and who has gone to the extremes of killing themselves through insulin omission has to suddenly deal with bloat, temporary weight gain, fatigue, and numerous complications from poor blood sugar control such as Peripheral neuropathy, Retinopathy, Gastroparesis, Renal failure, and the list just keeps going. This usually comes as a shock to the person in initial stages of recovery because they didn’t experience any of these symptoms when they were in the vicious cycle of bingeing and omitting insulin. Their body was numb, and its only once the blood sugars come down that the physical symptoms and consequences of diabulimia really begin to show.

Erin, what has your recovery been like? What advice would you offer someone currently struggling with diabulimia?

My recovery was a rough and rocky one. As anyone in recovery knows, there are many ups and downs, and there are days where you want to give up and not try anymore. I was never a person who adjusted well to change, and I had been living my life with diabulimia for so long that it was all I knew. I was afraid to see my life without it, and I was afraid to get to know the real person that was living beneath this awful disease. Getting past the denial was the hardest part for me and giving up all the coping methods I had become accustomed to was not easy. When I was on the road to recovery, there was no place to go to get help and the term diabulimia did not even exist. I thought there was nobody out there like me to whom I could relate to, and I thought I was the only person struggling with this issue, which is what Asha and I hope to change. Now there are places to get help like We Are Diabetes, and there are people to turn to.

I was lucky enough to find a doctor who cared enough about me to research this issue and help me. We worked together to figure out a plan and she helped me by gathering bits and pieces of information from counselors and eating disorder clinics and she formulated that information to fit specifically for diabulimia. Due to the fact that there were no programs available for people like me, we had to design our own treatment plan. I was so frustrated with entering “treatment programs” where they didn’t even watch to see if I was testing or taking my insulin. I was set up for failure. My doctor was the only one who I could be honest without her judging me. Instead I was too afraid to admit what was going on so I kept hiding it and pretending I could figure it out on my own. If some of the doctors I went to caught it earlier maybe I would not be suffering from some of the consequences I am dealing with now. Instead my doctors told my parents and me that I needed to grow up. They said it was a maturity thing when really it was a young girl who was in so over her head and so out of control that I was going to kill myself.

My recovery road was long, and I had times where I tried my hardest and failed. I had to get back on the wagon many times before I finally stayed on for good! I’ve been in recovery now for six years and it’s amazing how much my life has changed for the better. For any young girls struggling now, I would tell them to find someone that they can trust and confide in them. Don’t be afraid to admit that you need help.

From the time we are diagnosed we are taught that managing diabetes is like managing a bank account. We are taught that if you follow the rules everything will run smoothly, but it is nothing like that, and the same people that are telling us how easy it is to manage are the same people who are criticizing us for not having perfect A1C. Diabetes is incredibly hard to manage. For any young women that are out there reading this, I am telling you to find one person, tell one person, trust one person. Don’t hide it any longer because not being able to manage your diabetes is nothing to be ashamed of. There are thousands of young girls out there like you who are going through the same thing. You are not and never will be alone.

There is no way to avoid the numerous and sometimes deadly consequence that diabulimia can cause unless you seek a way out of the vicious cycle. I thought living with diabetes was hard, but living with the consequences of diabulimia and diabetes is much harder. Your life is happening right now! Make the most of it and don’t wait!

Asha, what is the future of WAD? What can we expect to see from this organization? Also, where can women find help?

We Are Diabetes is just getting started! There are so many plans and projects in the works for the website and the online community, but you’ll just have to keep following our progress both on the website as well as on facebook to see! We Are Diabetes will be spending the rest of the year continuing to reach out to the eating disorder awareness community to offer our unique services to the specialized group of type 1 diabetics with an eating disorder. We are currently in the process of applying for our non profit status so that in the future WAD can offer scholarships to individuals seeking treatment and other types of financial support. We Are Diabetes has plans for community action events, fundraisers and educational seminars that are already in development. For more information regarding We Are Diabetes or for information on diabulimia please visit http://www.wearediabetes.org

Online Support

◦                Diabetics with Eating Disorders (DWED)

◦                Diabulimia Helpline

◦                Juvenation

◦                dLife – Diabetes Community

◦                TuDiabetes

◦                Eating for Life Alliance

◦                Eating Disorder Hope

◦                Alliance for Eating Disorders Awareness

Books and Media

◦                Diabulimia: Diabetes + Eating Disorders

◦                Eating to Lose: Healing from a Life of Diabulimia

◦                Eating Disorders and Diabetes: Diabulimia and Beyond

◦                Geneen Roth – geneenroth.com

◦                I Wish I Had Known

◦                The Smart Women’s Guide to Diabetes

Treatment Centers:

Treatment for Hope of the Sierras centerforhopeofthesierras.com

Park Nicollet Melrose Institute, parknicollet.com

Eating Disorder Center of Denver, edcdenver.com

The Cumberland Hospital for Children and Adolescents, cumberlandhospital.com