Once I hit puberty, I was a fat girl. I wasn’t morbidly obese, but I was overweight and it was obvious on my short frame. This was not something I hated about myself, and it wasn’t until college that I felt uncomfortable with my body, but it informed my later years. The experience of being overweight (and therefore mocked/ridiculed/generally viewed as “unfortunate” or “unseemly” or “lazy”) has affected my ongoing relationship with myself.
In 2007, I lost 40 lbs by training for the Breast Cancer 3-Day. I also lived alone and worked a lot, on my feet. I was committed to training, but also still had the privilege of a largely functioning body. I was tired and had some joint issues, but it was more occasionally annoying than anything else. Most importantly, I had time and stamina. I could walk 10 miles a day, in the sun, in the heat, without any fallout.
My weight fluctuated a little bit for the next few years, until in 2009, when I lost my hearing. My neurotologist wrote out a long, high dose steroid taper and within a month, I had gained over 20 lbs. In 2012, after a serious effort (working out 6-8 hours a week for several months), I lost 10 of those pounds.
This was the point at which I realized that there was some fuckery afoot with my weight. Like no matter what I ate, or how much I exercised, my body would not lose any more weight, and especially not around my swollen midsection. A few months later, I had my ostomy surgery and in the weeks after that, I lost 10 more pounds. The swelling and squishiness was gone. The proof was in the pudding. My mast cell disease and its subsequent inflammation were keeping me swollen, and squishy, and fat.
Fast forward several months and a prescription for high dose steroids was being slid across the desk to me. “I don’t want to do this again,” I started, but I knew I basically had no other play. So I took them. And two months later, I had gained thirty pounds.
I am still on steroids; very low dose, but still on them. As I have stepped down the steroids, I have lost some weight, but I am still 20 lbs over where I was. I walk a lot (10-15 miles a week), and do yoga as I’m able, but my body has taken a serious beating this year. I got a PICC line placed in March, which meant no weight bearing with that arm, and that eliminated most strenuous forms of exercise I can safely do. I can’t do cardio. I couldn’t swim with the PICC. Now I have a port, and I can’t do any exercise for at least five days. I’m forever being told not to exert myself while also being reminded that being overweight causes me a lot of problems.
I have almost no control over the way my body looks. I don’t mind having a colostomy and a port, I really don’t. But I do mind that being overweight means that people judge me for being “lazy” or “unhealthy” or “making bad choices.” I don’t know why anyone would ever comment on a person’s diet or general fitness, but it happens to me, so I’m sure it happens to you. People are always like, “Oh, anyone can do [insert name of cliché fitness trend],” or “Your problem is that you drink soda,” or whatever.
Are you kidding me, people?
Are you fucking kidding me?
I think my problem is that I have a rare, severe, life threatening disease that is destroying my body. I think that’s my problem.
I cannot eat your stupid diet food because it’s full of artificial sweeteners and garbage.
I cannot do cardio because it will cause me anaphylax.
I cannot do most other types of exercise because my body fucking sucks and has failed me repeatedly. And the fact that it is fat is the least of the ways it has failed me.
I throw up a lot of what I eat.
I drink one can of Coke a day. I will probably do this every day until I die. And you know what? That’s 140 calories my body needs, because while you’re thinking about how much less I should be eating, I am not getting the amount of calories or vitamins or minerals that my body needs. And frankly, for all the shit I have to put up with on a daily basis, a can of Coke is the least of what I deserve.
I don’t like being inactive. I don’t like lying in bed and needing to sit frequently. I don’t like feeling weak.
There are some days when I look in the mirror and think that can’t be me. I am so tired of living in this shell that doesn’t even look like me.