My RA Costume
In keeping with the Halloween theme, I thought I’d make my own attempt at the RA-Halloween connection. It’s probably my favorite holiday (or maybe a tie with Christmas) and it has been since I was a little kid. I love the decorations, the crisp October weather, the beautiful colors of the changing leaves, and the chance to dress up in a fun costume and be someone you’re not for a night. Living with RA, there are a lot of times I wish I could escape and be a new person–more attractive, more confident, active, energetic, worry-free, and of course pain-free.
I try to live most days as though I don’t have the disease; I don’t want it to take away from who I am or what I want my life to be. But it has, of course, over the years. One of those ways is that it’s altered my outward, physical self. I know it’s maybe shallow to worry about your looks, but really, everyone does it. I do try hard to accept and adjust to what RA has done and continues to do to my body, but it’s difficult.
The first thing that happened to change my appearance was only about a year after I was diagnosed with RA, at age 20. My right wrist flared up badly and then the flare never went away. I had arthroscopic surgery on it (a synovectomy) which helped somewhat, but by the time I had the surgery the cartilage in my wrist was already eaten away, with the bone beginning to erode. Permanently damaged. The pain, even after surgery, was borderline excruciating, which made doing everyday things like writing and fixing my hair and getting dressed difficult (I’m right-handed).
In addition to the pain and disability, I had the emotional pain of being stuck with this deformed body part, with its surgery scars and weird, puffy lump of damaged tissue. Because the pain was so bad, I had to wear an ugly wrist brace all the time so that I could try to function and get through my classes in college. When you’re 20 years old and you want to look like your peers and like a normal cute college girl, a big hideous beige thing strapped on your wrist is not the preferred accessory.
Strangely, about five years after I had the surgery, my wrist pain got mysteriously better and I didn’t need the brace anymore. Thankfully I haven’t had to wear that odious thing ever since! And by now I’m quite used to the scars and my misshapen joint that probably only I notice anyway.
A second example of RA ruining my physical appearance and self-esteem was not long after my wrist surgery. I awoke one morning and could no longer wear my contact lenses because my eyes were suddenly too dry. A very near-sighted contact lens wearer since seventh grade, I hated wearing glasses. I remember feeling silly about how upset I was that I couldn’t wear my contacts anymore, but it wasn’t fair! Hey RA, you have all of the joints in my body to beat up, so why can’t you leave my eyes alone?
I wasn’t officially diagnosed with Sjogren’s Syndrome yet (that came a few years later when I had a year-long bout with intense eye inflammation), but my rheumatologist and ophthamologist both suspected my dry eyes were from RA. I tried eye drops, tear duct plugs, and special contacts but nothing worked. Ugly nerdy glasses for life, great. This all sounds very vain, but at the time I was so angry and devastated. Today I quite like wearing glasses, although if I had the chance I’d go back to contacts in a heartbeat.
The next body issue is probably the main one I’ve been dealing with since having RA–WEIGHT GAIN. Being on and off prednisone constantly does some terrible things to your body: fast and significant weight gain, bloating, fat face, fat belly, weird fatty lump on the back of your neck (Buffalo Hump), inability to lose weight, and metabolism changes. Attractive stuff. Why don’t my pants fit all of a sudden? Why do I look six months pregnant?
Even after I’m finished with a prednisone treatment, it seems impossible to lose the weight I’ve gained, no matter what I do. Exercise? Starvation? Both? Nope, I haven’t lost a single pound so I might as well just sit here and stuff my face and forget about it, right? The side effects from prednisone can be so infuriating and they really mess with your body, body image, self-esteem, and mental health in general.
Taking steroids also makes me feel like there’s this evil magic RA wand being waved over my head: You will now be fatter and less attractive and will look less and less like your real self, and there’s nothing you can do about it, BAM! That might be a bit dramatic, but it’s how I felt and still feel. What’s the alternative? Not take my RA medications and soon have my life quickly deteriorate? I don’t think that’s a good option.
Let’s get back to Halloween. My friends are having a Halloween wedding on Friday on All Saints’ Day, and guests are encouraged to dress up in costumes. I’m really looking forward to it! I love wearing a costume and feeling uninhibited, like I can have fun being someone else for a day. But what I would really like, for just a day even, is to take off this heavy RA costume I’ve been wearing for 16 years.
I want to cast off the extra stubborn pounds that won’t go away, and throw away the dowdy sensible shoes I’m forced to wear on my inflamed, swollen feet. I want my right ankle to shrink back down to its normal size. Is my ankle bone still there? I used to have such nice little ankles!
I also want my eyes to return to normal, so I can toss out my glasses and enjoy wearing eye makeup again without resembling a librarian (I actually think librarians are pretty cool, but you know what I mean). I want my right wrist to heal and look like a healthy wrist, instead of a lumpy, twisted disfigured one. But what I desperately want, most of all, is to just look and feel like my old self again. The “trick” is still on me, however, until a cure for this destructive disease is found.
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