My Story

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My dear friend Bailey, who is as well is a type 1 diabetic like me, really has inspired me to write about something that I have held so close and so secretly for so long. I have made little comments about it in the past but I have honestly never have came out and said it so openly. I have never even completely opened up about this to my mother, whom I look at as a best friend and role model… I guess you can say I have been so scared of disappointment and shame. I have held so much guilt over my acts that I rather act as they didn’t happen. But they did…and they have formed me into the person I am today which is a person I am proud to be.

You might be wondering where I am getting at…well at my age of being 24 I really have realized that the only way to make change is to be open and honest. This is why I want to talk about my story…my story of dealing with diabulemia. For Baileys 13th diabetic anniversary she talked about her struggles with what she had gone through with her own diabulemia and all I could think was how strong she was…how strong I am…how strong so many people are. We have the power to use our own experiences and open up about them. Before I dive into this I want to explain what Diabulemia is. Diabulemia is an eating disorder amongst type 1 diabetics. Instead of neglecting food or throwing it up we stop taking our insulin in order to lose weight. Not only do we become malnourished like others with an eating disorder, our blood becomes acidic and our bodies start eating itself. It is one of the most dangerous things a diabetic can suffer from as it is pretty much committing a slow suicide. Someone with diabetes mortality rate is 2.5 % a year. Someone with anorexia is 6.5 % a year. Someone with diabulimia mortality rate is 34.8 a year!!!! That is more than triple….

 

 

In no way am I saying one is worst than the other. All eating disorders are an issue wether it being binge eating or over exercising…they all need to be raised awareness about but as a type 1 diabetic who has suffered with diabulimia for 7 years of my life…I feel it is my place…my doing…my reason to talk about it and to help others deal with it.

 

Honestly, my story starts from the beginning of my diagnoses. I came into the ICU with a blood sugar of 1,350 and about 20 pounds lighter then what I was originally. I was pretty much on my death bed. I spent four days hospitalized and diagnosed with type 1 diabetes. The start of it all. Through having to take insulin, I gained back the 20 pounds I lost…plus a little extra that was more than likely my bodies way of protecting its organs as it was super malnourished. Being a young teenager and being around other young teenagers, you get comments made about how you looked like you gained weight even if it was needed weight gain. Not long until that it started to make me feel like I was “fat”. (not once in my life have I been fat, always have been tiny). It wasn’t long until I started realizing how different I felt than my other friends. They didn’t have to excuse theirselves to go take insulin or pull out devices that make everyone stare at you. I just wanted to experience normal and normal to me was not being diabetic. I started slowly missing insulin doses and neglecting blood sugar checks. Eventually, I noticed that I was losing weight due to high blood sugars. Being a teenage girl in a society that markets weight loss as being the best thing to happen, it felt good. Getting comments that I was “skinny” felt good. I was soon thriving off of that. The next 6 years I spent my time battling with this eating disorder. Through those six years of neglected health, I had to be pulled out of high school, having zero energy, lost a lot of hair, lost a lot friends, went into depression, and was in a constant battle of self hate with what I was doing. I went back and fourth with taking care of myself to not taking care of myself. When I did take care of myself I went to the extremes. I ate super clean, stayed away from carbs (tuna salad and eggs were all I would eat), and worked out everyday until I couldn’t take anymore of that lifestyle or recognized I gained weight and needed to go back to things before. I think my eating disorder was hard to detect because I never let myself get below a certain weight nor would I let myself pass up the 100 pound mark ( crazy…I know…) I also manipulated everything around me from my blood sugars to the people around me. I felt so shameful of who I was…what I had become. I had many battles with myself, with doctors, with my parents. It only maddens me now that my pediatric endocrinologist never recognized my eating disorder and just shunned me away from her practice. I never got the right help until I was 19 and I fell into a hard depression. I started experience nerve pains in my back that were out of control. I thought I had developed diabetic neuropathy and with that thought I felt like my life was over. I spent a whole month crying multiple times a day, wasn’t sleeping at night, and battling with suicidal thoughts. There were multiple times I would go to my little sister and tell her I couldn’t do “it” anymore and by “it” I was meaning life. I knew it was time to start taking care of myself by taking insulin but having to let go of that eating disorder control was something I didn’t feel ready for but was forced if I wanted to get better. I went on an anti-depressant and remained on it for a whole year. Within that year I found life again. I started feeling happy and back to my old self. My food fears disappeared. I wanted to be around people. I wanted to be a healthy type 1 diabetic. Especially the moment when I found out I was going to be an Aunt for the first time. I wanted to be around for that, I wanted to be a role model. Within that year I winged myself off of the anti-depressant, I stopped having nerve pain, and I went from having A1c’s in the 10’s to A1c’s in the 5’s! I truly was happy!

 

    I still experience depressive episodes and anxiety. I am not longer on any medication other than insulin and want to remain that way so I find ways to cope: hiking has been that outlet for me.

 

Now I say that I am recovered but I feel as I wasn’t 95% recovered until recently. I never knew how much of an eating disorder I had until I started researching about eating disorders. I still remained under weight regardless that I ate right and was taking care of myself diabetes wise. I still didn’t have a period. So a year ago I found the Minnie Maud Guide. I decided I needed that. I needed to gain 10 pounds. So I followed it by eating in surplus of 2,500- 2,800 calories a day and stopped exercising as much. Let me tell you how much it helped. Within 8 months of doing so I had lots of new hair growth, got some actual shape to my legs, and my period returned. It was hard to accept ten pounds of weight at first but I have started to appreciate it. It is what has helped me be able to carry myself through the 8 mile hikes that I love to do. It has been the reason why I can now rock climb up 40 feet walls. It was the strength my body craved for. I truly think I will always have these struggles in the back of my mind forever but with being part of a community who understand you is probably one of the greatest things. It is the reason I decided to write this and share it to anyone willing to read it. I am Haley. I am a type 1 diabetic. I have struggles. BUT…I also have happiness. I am in a place where I can embrace this.

 

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