WEGO Health has initiated the Diabetes InfoGaps Program, which includes a survey about “missing” diabetes topics as a way to identify and then generate information and thoughtful discussion about subjects that people feel haven’t had a fair share of the spotlight. I encourage you to go take it – speak up, be heard!

I started to take the survey, and one of the possible responses, body image, got my wheels spinning. Do you ever think about body image and diabetes? I think about it sometimes because I’m intrigued by the relationship between the two, at least partly because I was pathologically plagued with body image issues for most of my teens into my early 30’s. Body image concerns are common in people with physical conditions, but since diabetes is an invisible disease, I think its relationship to body image is more easily discounted than it might be for someone with a more obvious physical ailment.

So what is body image anyway? I went looking for a good definition for my own clarification. After perusing some websites on the matter, I decided I liked the National Eating Disorder Association’s definition most because it conveys depth of meaning beyond stating “how you see your body and its appearance”, and it helped me think more specifically about the relationship between my experience with diabetes and my body image. According to NEDA, body image is:

• How you see yourself when you look in the mirror or when you picture yourself in your mind.
• What you believe about your own appearance (including your memories, assumptions, and generalizations).
• How you feel about your body, including your height, shape, and weight.
• How you sense and control your body as you move. How you feel in your body, not just about your body.

Painting by Norman Rockwell

For most of my life, the visual clues that I have diabetes have been practically negligible. These days, I wear my pump on my hip, clipped to my pants pocket. I think it’s an unsightly lump inside my pocket or elsewhere under my clothes, so wearing it on the outside has become my preference. On the rare occasion I wear a dress, I have contraptions to wear it under my dress on my thigh, but in lieu of seeing my pump, you can see me fishing it out from under my dress, usually in the most unladylike of fashions, so either way, there’s no hiding it. Besides my pump, the other visual reminders of my disease are gnarly, calloused fingertips, and on the rare occasion I wear a swimsuit, an infusion set and cgm sensor, plus dot-to-dot scars on my abdomen, hips, butt and the sides of my legs. None of that adds up to anything glaringly obvious though, so a quick glance in the mirror shows that I look “normal”.

Picturing myself in my mind is another story because I have a vivid, admittedly morbid imagination. I worry about the possibilities of what diabetes could do to rob me of looking “normal”. How would I look if I was sick from nephropathy, having to go to dialysis several times a week? How would I look if I was blind? What if I had a toe, foot, or leg amputated? I hope those things never happen, but when I think about body image and diabetes, my mind inevitably goes there. Body image is an amorphous thing that changes with time and age, and in the case of diabetes, disease status and complications.

Sometimes, in my mind, and certainly in the mirror, I see myself as this “normal” shell, and I imagine everything inside me rotting. I know it’s not the most optimistic perspective, but for me, that’s what diabetes is and that’s what it does. It rots my body slowly from the inside. Maybe complications will change my appearance, and the rotting will become apparent on the outside, but it’s the damage that I can’t see that scares me more. I feel like a tree infested with insects that gnaw on everything inside that allows me to blossom and spread my roots. One day, the diabetes insects won’t have anything more to feed on, and I’ll just topple over, a dead, diseased tree, bark intact, but the pulp rotted to dust.

Like that rotting tree, with diabetes, appearances are deceiving. In my world, that’s as much a truth as gravity and the cold, refreshing delight of a Diet Coke. I knew from a young age that there was something amiss between my outward appearance and what was happening inside my body. I believe that disconnect became a foundation for the food and body image problems I developed as a teen. Was I a normal, healthy kid or was I a diseased, sick kid, was I fat or was I thin, was I hungry or was I full? How could I feel at ease in a body that didn’t make sense? Even today, I grapple to reconcile my ongoing conflicting experience of myself, looking, sometimes feeling perfectly normal and healthy, but knowing the physiological toll my disease is taking, and sometimes feeling its effects.

To my credit, I’m more comfortable with my body now, both the aspects I like and those features I’ve come to accept as is. Diabetes might be an invisible disease, but I refuse to hide it, and that’s bolstered my body image more than anything I might do to enhance my appearance, although I’m not completely immune to superficial cosmetic woes. I dye my mousy brown and increasingly gray hair a saucy shade of red. I make an effort to walk the dogs so I’m not a total blob. I will always be a little bummed about not having a nice rack, if for no other reason than because there are tons of really cute tops and dresses out there that I literally can’t wear because they need boobs to keep them in place. There is a bright side to not having an hourglass figure though, and instead of lamenting what I don’t have, I try to make the best of what I’ve got.

My feelings about my body are more than skin deep though. They have to be since every other thought is about predicting the internal ups and downs of things and constantly asking myself what I would do at this moment if I was a pancreas. As someone with diabetes, my body image is not just what size jeans I wear, how big or not big my boobs or my tummy or the flab on the back of my arms are. My body image is partly reflected in what I do to enhance the curb appeal, but what good is prettying up the outside if the walls, floors and roof are about to collapse?

How exactly does one have a good body image under these circumstances? The always temporary illusion of control, or the weighty reality that the illusion is as good as it gets. There are moments when it’s really hard to love my body because I often feel like I have no control over it, and I actually lose control when my BG is low enough. My body image is never going to be blemish free, whether it’s the scars from the past, or fresh bruises from trying to navigate through life in a malfunctioning body. I do what I can to counter that by fostering the best body image I can. I monitor my automatic thoughts, and try to focus on the positive ones while dismissing the negative ones. I don’t read women’s magazines or watch shows like America’s Next Top Model because I think they’re all garbage designed to make women feel like they’re not good enough, aesthetically or otherwise. I have a husband whose words and actions indicate he kind of digs me. I wear clothes and shoes I like that fit and are comfortable. I manage my diabetes as well as I can, and that’s made a world of difference for me. I try. I really do. The effort is worth it, but it is effort nonetheless to love a diseased body.