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Guest Post: Diabetes and Eating Disorders.

Today's guest post is from fellow T1 PWD, Megan Roy.  Megan has gone though some difficult times with her health, and she's bravely sharing her story with us.  Thanks, Megan, for being so honest.

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Megan RoyThe first couple of years with diabetes, it honestly didn’t even affect my life much at all. I took shots in my belly and pricked my fingers and that was about it. I still was very active in sports, running and playing tennis whenever I wanted to. It wasn’t until I got into college that diabetes really started to affect me in a way that I wasn’t expecting.

As my A1C began to creep up, my weight also crept up (it happens when you exchange long runs for nights out with friends). Emotionally, this began to weigh heavily on me (literally!). I did what all of my friends seemed to do at the time; I started trying to manipulate my food intake and exercise routine. I thought to myself about when I was first diagnosed, and figured out the weight/insulin connection as well. I minimized my insulin dose to that of a small child. My doctors were confused, but my sugars were improving, so they were happy.

I have always been a perfectionist. I have always been a Type A personality. Give me a challenge, and I will overcome it. So now we have the challenges of being a little different in college with the diabetes + the challenges of every college-aged girl (weight maintenance and awareness) + a perfectionist mind set + body image issues + spending hours researching and figuring out numbers = disaster.

My seemingly harmless diets spiraled over my college years into a full-fledged eating disorder. As hard as it is to talk about, I suffered from anorexia. Sparing the dark details as to how and why, let’s just say it was the worst time in my life. I didn’t feel like myself and I was fully isolated from everyone I loved and cared about. The eating disorder hospital was the hardest struggle I have ever had to take on. This paired with diabetes usually doesn’t turn out well.

Luckily, now two years later, I am not longer in this battle, but I feel like these sorts of issues need to be talked about. I know I am not the only one that has issues like this, and I feel like a conversation needs to be started about the emphasis put on diabetics and food. The main focus when I was diagnosed was put on food (or at least in my mind). It was the one aspect of this uncontrollable and frustrating disease that I had some control over. However, I now have a more balanced mind-set, and know different coping skills and tools that can help me when I have a tough day, week, or month.

Everyone has different struggles, but always know that there is someone who feels the same way, or has gone though similar issues. There isn’t one way to overcome an eating disorder, and it is something that can be a struggle your entire life, and is for many people, but I would say that having supportive, loving people around you makes it easier. It was the toughest struggle of my life, and at some times, I didn’t even know if I would be free of it. I would say the most important thing I can say is that if you are struggling, tell someone. Eating disorders usually come with a lot of embarrassment and shame, and they are hard to explain to people sometimes, but starting the conversation is the most important part.

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Megan completed her studies at DePaul University in Chicago, majored in communications, and is now working for a vitamins and supplements company. She blogs at Type 1 Diabetes: The Stuff Doctors Don't Tell You!, so skip over and to read her posts and welcome her to the DOC.

Comments

Thank you for sharing your story, Megan. I suffered for many many years with what they now term "diabulemia" (and still kind of cringe when thinking the word. When I started, there was no name for it). I am living proof that you can come out of it and do well. If you want to hear my story it's thisismysos.blogspot.com. Proof that you are not alone, but that you can make it through (AND have a healthy happy sassy little baby!!) Please let me know if you need someone as you continue through your own journey!

Thank you for sharing your story, Megan. I am sure it was hard to share--and healing, too! You're so right about the diabetes and food connection. I remember being in the hospital, feeling really funny (it was my first low) and telling the nurse I wanted a pretzel...I did not get one because it was not on my "diet." What I really needed was sugar. But then again, that same nurse had told me "if I ate sugar I would die!" I think the health care establishment knows better now, but there's still so much misperception. I think that your sharing your story is one way to help things change. Thanks again!

thanks for your post. I was in a similar position, although I was limiting insulin altogether. I wish more doctors/CDEs would bring up this subject as I feel like it's not really mentioned at all in the D medical world. I was Dx'ed at 17 as type 1 and unfortunately never had good diabetes education until years later, after some very bad habits set in. If I knew then what I know now, I would maybe have been 20 lbs heavier, but a whole lot healthier.

Wow, Megan. What a powerful story. I have a friend who did much of the same thing, but no one wanted to listen to me once I figured out what she was doing. I'm happy that you're doing so much better now! Keep up the great work!

Great post! I very much agree that the emphasis on food when diagnosed needs to be addressed. I was diagnosed during my freshman year of college, and one of the worst things that happened to me post-diagnosis was when I went for my first "check-up" 3 months after being diagnosed, and the nutritionist my endo had set me up with scolded me for having gained back the weight I had lost pre-diagnosis (which was about 20 lbs...my BMI at that weight was 20.4, so not underweight or anything, but with the 20 lbs it was also in the healthy range: 24.2). Needless to say, I did not ever go back to that nutritionist, although it did take me a while to figure out that *she* was the delusional one in that situation.

Thank you, thank you, thank you for sharing your story! This is a tough topic. Sometimes I think T1 diabetes automatically comes with some sort of eating disorder. As a kid, I was a "closet eater," regularly sneaking foods I shouldn't have been eating. When I got to middle school, I met another T1 and she was the first person who talked about what is now referred to as diabulemia. I will admit that I tried it once or twice (but felt so miserable I couldn't really stick with it, and then felt like a failure there).

The hardest part about diabetes is the constant sense of failure, especially when you're a teen and those hormones make control so incredibly difficult. T1 is an emotionally draining disease and I think endocrinologists have generally failed miserably at managing the emotional aspects that accompany having a condition that requires so much intensive management.

My hope is that more people like you will honestly share your story and create an awareness among CDEs and endos that this exists and it's real and it's something we sometimes need help with.

Thank you guys for all of your support! You all sound like amazing people! It is time to give doctors the education and awareness that girls from ages ~ 6-20 are going through immense pressure from everywhere, with the added pressure of diabetes, and food choices, one word from a doctor about weight could totally trigger a disaster. I was told my my doctors to be very careful about weight my whole life because of my blood sugars. When you are that age, and a girl, you need to find yourself through any means necessary. If any part of you is too controlled, you usually rebel. Thank God I was given a second chance! :) The shame and guilt cycle with type one and two is consuming! Let's let ourselves live and listen to our own bodies, not external media!

Thank you for sharing your story Megan--it can't have been easy, but I hope it was cathartic. I was diagnosed my junior year of college, and there was no part of the diabetes education I got (from a very good hospital, and the head of our student infirmary was an endocrinologist!) that addressed how to deal with the food/weight/diabetes issues that everyone has to face--no matter how healthy their attitude about their bodies and food. Thanks for doing your part to remove the stigma of needing help with this part of the beast that is diabetes.

Thank you Megan, for sharing so bravely. You are right, it does need to be talked about more. I would also wonder if there aren't a few more males that deal with eating disorders too, I bet that is talked about even less.

When you think about it, as a friend of mine often says, diabetes is one big glorified eating disorder.

You are a brave woman Megan. and I thank you for getting your story out there to other Diabetics.

I too went through a period of self deprivation which I excused as dietary restrictions in order to control my BS. I reduced insulin, portions and especially my size. I dropped down to 105lbs on a 5'4'' frame. It was only after a year or more of questioning from family and friends as to why I "could not" eat certain things I used to that I realized I had gone to an extreme.

I was able to get myself back to a healthy weight but it took time and a lot of internal struggle.

Now I have a healthy son and I find other ways to healthily maintain my diabetes and weight. I wish you health, happiness and strength!

I am always so glad to hear people talk about the trials they had/have with diabetes. I did not know anyone else that had this disease when I was diagnosed at 16, and it was awful to feel like I had no one to talk to that could really understand (my family and most friends were wonderful, but you can't really know unless you KNOW). I was also very skinny and athletic when I got diagnosed, and I gained 20 pounds very quickly. At 16, this was "the worst" thing that could happen, and I figured out in college that if I minimized or stopped taking my insulin, I could eat whatever I wanted to and would still lose weight. I did this for at least a year on and off, even though I knew deep down it was wrong and that I was most likely hurting myself, but the pressure to be thin like I was before was too great at the time. I constantly wonder now what is in store for me in the future because of the time I did this and can only hope that I have made up for it since then. One sign for me that things heal and get better is my happy healthy 7 month old son! Thank goodness for the diabetes online community - I know it would have helped me immensely to have been able to talk about this with people who were the same as me, and not doctors and nurses who sometimes seem to know nothing about the disease they specialize in. Good for you for overcoming and talking about it!

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