*WARNING: Possible triggers for eating disorders.

I missed out on posting for National Eating Disorder Awareness Week this year as I didn’t start this blog until after it had passed. This is something I think is quite prevalent in the diabetic community though, particularly in those of us with type one. I have experience with this as well and that makes this a very personal topic for me, one I haven’t shared with very many people – out loud at least. When I was about 16, I was a little chubby. Puberty was hard on me on two shots of NPH and two of Regular a day. I’m hoping it’s easier on my daughter with much better tools for control available. At any rate, my body changed and my weight was a bit more than the charts said it “should” be – not extreme by any means, but as we all know, doctors can see us only as numbers on a graph a lot of the time. I was also a teenager who was trying to fit in. Add to that I had type one diabetes since the age of 10. We were still using the old tyrannical exchange diet back then too. Consider yourself lucky if you have never been subjected to this and I’m thankful my daughter has never had to portion out her food like that. You can look it up if you like. The ADA had charts up the wazoo. I can’t even look at them anymore.

Now, with all of this attention on what you eat as a child and as a teenager every day, 24/7, it’s really not surprising that a vast number of diabetics end up with eating disorders. I’m sure I succumbed out of a need for control. You can’t control this disease no matter how hard you try. I also lost weight, which everyone praised, doctors included. I got down to about 105 pounds, which in this age of “there’s no such thing as too skinny,” that doesn’t sound dangerously thin to you I’m sure, but I was very bony and consider I stopped getting my period for about 3 years. Now, that IS too skinny. Not having your period is called amenorrhea and this secondary form of it was self-induced in my case. It can have some serious repercussions such as reproduction and fertility problems and loss of bone density for starters. I’m very lucky I was not affected by them. I subsisted on an apple and a slice of peanut butter toast for breakfast, half a peanut butter sandwich for lunch, and barely ate whatever I was served for dinner. If I ate more than I thought I should, I threw up. It took me many years to be able to eat peanut butter again. (Apples, I’ll always eat.) This continued until I was about 20. Now, I am someone who sets goals and “gets ‘er done” if I really want something and I felt a sense of accomplishment in not eating, even though I was hungry. I finally had some control over my body, which was trying to destroy me anyway. What difference did it make if I beat it to the punch?

I had this sense of control, which is a bit intoxicating for sure. You know what else I had? Panic. If I ate one more cracker than I had allotted myself that day, I would panic until I could get it out of me. I also had depression. If the scale was up even just one pound, that would ruin my day or even week. As a T1, if I did have a low, it was a gift from above! I could actually eat something or drink juice and not feel the guilt from eating! I HAD to eat that to stay alive, right? I think I actually balanced this just enough to stay alive and not get sick. I never went over the line to full-blown anorexia. I wasn’t a binge eater, so not classically bulimic, but I severely restricted my diet and I certainly did purge. I have always exercised and still do to this day, but I’m sure I upped the ante back then. It’s not something I recall having obsessive thoughts tied to though. Exercise has always been fun, so was probably a nice distraction with benefits at the time. Disordered eating behavior is a big topic and I am not qualified to offer solutions, but there is help out there if you or someone you love needs it. A good place to start is the NIH at https://www.nimh.nih.gov/health/topics/eating-disorders/index.shtml

Having talked to many other T1 women in the subsequent years, I heard from those of us who went through puberty with this disease and many of them, if not most, experienced rebellions which involved not taking care of their diabetes, not taking insulin injections, etc. I never did that. There is another eating disorder that is completely only one that diabetics get. It’s called “diabulimia” and the big difference between this and other eating disorders is that the diabetic restricts insulin for calorie purging. One of the symptoms of type one diabetes is unexplained sudden weight loss and that happens because the body is not getting any insulin so it is not able to use glucose as it doesn’t get to the muscles and is gotten rid of through urine. A dear friend of mine, who is an acupuncturist, once told me that the ancient Chinese called type one diabetes the “wasting away disease,” which is about as apt a description as I’ve ever heard. So, T1s will put themselves in this extraordinarily dangerous position of denying their bodies insulin because it will make them lose weight. Diabetic ketoacidosis is very easy to succumb to if you are doing this and that can be fatal very quickly. For more info on diabulimia, read this article from Diabetes Health https://www.diabeteshealth.com/diabulimia-what-it-is-and-how-to-treat-it/

It wasn’t until after having children and in particular, after my daughter was diagnosed at age 5 with type one diabetes as well, that I decided I didn’t want to have so much focus on food anymore. For example, most endocrinologists and nutritionists will tell you that T1s should dose insulin about 15 minutes prior to eating a meal. I was adamantly opposed to doing this for my 5-year-old daughter. We would set a plate of food for her and give insulin for everything on that plate. What if she gets full halfway through the meal and isn’t hungry anymore? Guess what? She has insulin in her system now but only half the carbs she was dosed for. She HAS to eat the remaining carbs in some way. What a way to teach a kindergartener how to have an eating disorder: eat even though you’re full! I wanted her growing body to eat what it wanted and how much she felt she was hungry for, not a pre-set amount not picked by her or her appetite. I talked to my daughter’s doctor (one of the wonderful pediatric endocrinologists at Children’s Hospital Los Angeles) and told her I would dose her halfway through the meal or after she had eaten the meal for the reasons I just mentioned. She agreed with me. Other parents of children with T1 may not agree with me and some doctors may not either, but that’s okay. It works for us. I do the same for myself.

As for me, I had stopped my purging many years before that. Of course, that urge never really went away and for a long time after, I would still struggle with the panic if I felt too full. I’m happy to say that doesn’t happen anymore. I’m not sure what flipped the switch for me. Maybe it was wanting to model better body image values to my daughter, or maybe it was using a drug called Symlin that was supposed to help T1s keep their postprandial numbers flat (translation for the non-Ds: after-meal blood sugar levels would not rise). This is a brand of a drug that is a synthetic version of a naturally occurring hormone, amylin, that is also absent in type one diabetics. It slows down the emptying of the stomach, which helps you feel full longer. It was injected subcutaneously and the nice side effect was you lost weight, mainly because it made you so nauseous, but I had two devastating lows that I honestly don’t remember and they scared the hell out of me. The really bad thing about the manufactured form of this drug is it made it really hard to raise your blood sugar and in a type one diabetic who is having a low blood sugar episode, that is life threatening! So I stopped taking it and would never take it again – that brand or any other.

An interesting thing happened at some point though. I realized I wasn’t any happier when I was very thin. It took every waking hour and so much focus on what I ate and when and how much. And that stupid scale! I weighed myself every day. If I went up one pound, I was plunged into depression. You find you’re also never happy even if you do reach that number you pulled out of the air that you “should” be. You’ll always find another one or torture yourself trying to stay at that one. We all want to be thought of as attractive. It’s human nature. I’m not perfect, nobody is, and there are of course times when I am self-conscious about my body and as a diabetic, concerned about the appearance of lumps and bumps that come with injection, insulin pump and CGM sites, but it is what it is and that is all okay.

So, the first step was I stopped weighing myself and guess what? I didn’t gain weight. I did lose the obsession of seeing what that number was though. I step on once in a while these days and at least every three months at my endocrinology appointments, but I know how my clothes feel, so that’s my real measure. I’m not rail thin. My body isn’t designed that way. It’s strong though and I’m happy with where I am. I run. I have muscle and I like the way I look (most days). Without restricting my diet or eliminating any food groups (a big red flag in my humble opinion), I’ve stayed the same size for the last 5 years or so.

I wish I could impart a secret on how to not obsess on your weight or diet. There’s no magic bullet though.  As a diabetic, I still have to look at labels and I’m really good at that after nearly 40 years with this disease. I need to know how many grams of carbohydrates are in what I eat so I can dose insulin appropriately. I can give you a pretty good carb guesstimate of just about any food you put in front of me too. I do like to eat whole wheat and brown rice because they take longer to break down and I avoid a blood sugar spike, but I actually prefer the taste of both of those anyway. I try to avoid diet talk with people as it’s soooo draining and I don’t want to have that much focus on food in my life anymore nor do I want to passively encourage it in others. It’s sad for me to witness the obsession, because I’ve been there, but you can’t talk people out of that mindset. Another bigger topic for another day is that the diet industry is just that – an industry. One that banks on the fact that you will fail and you will come back to them – with your wallet in hand! They know you will praise their system when you do lose weight initially, but you will blame yourself when that system eventually fails and the cycle continues ad nauseam.

That brings me to this post’s title:  “Wasted Years,” is a song by Iron Maiden and I quote, “Don’t waste your time always searching for those wasted years. Face up, make your stand and realize you’re living in the golden years.” I’ll never get back all the time I wasted on dieting and worrying and obsessing about food and weight. Those were truly wasted years. I hope I’ve taught my daughter (and my sons – boys aren’t immune to eating disorders either!) that food is fuel and should be enjoyed and not feared or restricted. I’d rather live in these golden years right now with the body I have and the people I love around me anyway. There are a lot more things to focus on that actually teach, enlighten, enrich, and reward us.

Stacey Rose

Stacey Rose is a type 1 diabetic mom of 3 (one of whom also has type 1). She is writer, runner, and music lover. She lives in Massachusetts and travels to LA frequently.