It’s funny. I’ve always worried a lot about fitting in, even before I was diagnosed with lupus and rheumatoid arthritis. About what other people are going to think of me. More recently, about the visual cues that signal illness.
Ironically, though, one of the things I really haven’t bothered to hide are the bruises I get from having blood drawn. Whether it’s two vials or 20 doesn’t seem to matter. I’m fair-skinned and my prolonged adventure with steroids has increased my bruising ability.
Similarly, It’s pretty hard to hide a cannula that’s in your arm for three days while you’re getting solu-medrol infusions for two hours each day. Yes, this scheduled in between the final exams and papers of my first year of graduate school. Just one of the many ironies that comes with being diagnosed with an invisible, chronic illness at the age of 22.
I know that for some people, my friends included, this is just too much “medical stuff” invading their perfect world of health and harmony. I know these things don’t make the “typical” graduate student.
Certainly, though, there are things I have made an effort to hide. The cystic zits that invaded my formerly acne free face while I was on prednisone was one thing. I finally decided to invest in some good cover-up, not so much for other people, but for myself. It’s hard enough to do deal with a changing body, both physically and mentally, let alone a changing face.
On the other hand, if we can’t show our scars and our wounds, then people are only willing to accept the healthy versions of ourselves. And being honest with ourselves, this is not always the way things are going to be. It may be the image we want to project, but it’s hard to project a false image built on lies when we don’t have much control over the situation.
There seems to be a constant conflict between fitting in and sticking out like a sore thumb. On the one hand, no one wants to wear their limitations on their forehead, displayed for all to see. On the other hand, fitting in perfectly and not “looking” ill has its own set of complications.
Sometimes people don’t believe that I’m sick or they don’t understand the severity of the situation. People don’t understand why I can’t just take a Tylenol and get over what is ailing me.
I think it’s especially hard for people my age to imagine something lasting forever. I try to explain that I’ll vacillate between better and worse, but I won’t ever be “perfectly healthy” again. This is something, that, especially when I appear so seemingly healthy, people find impossible to understand.
I think what I’m starting to realize is that just as I don’t owe anyone an explanation for why I became a vegetarian over six years ago, I don’t owe anyone an explanation for any of this. Or why I may look fine, but feel awful. Do you know how many people have told me that they have friends who have Lupus and “are just fine”? I used to feel like that was a personal dig. Like, if other people have this disease and “are just fine,” I should be, too. But I started thinking that “just fine” is an assumption in the eye of the beholder.
These people may look “just fine,” and it’s not to say that their disease could be in remission, however, it seems to me that the more likely story here is that people think they look fine, and, therefore, assume that they are.
For those who don’t know that I’m sick, I don’t just go blurting it out for fun. I don’t usually say anything unless it becomes necessary. But the truth is, pretend or not, lay it all on the line or keep it all inside, I’m not your everyday graduate student attempting to get a Ph.D. It’s not an easy thing for anyone; it’s certainly not going to be an easy thing for me.
Certainly, I hope that I can finish my program “on time,” which is just a euphemism for “before my funding runs out.” But the thing is, I don’t have the answers for when I am going to be “ill” or “not.” And with the unpredictability of Michigan weather, it means I’m kind of out of luck as far as “climate control” is concerned.
Sometimes I wonder, though, if our lives would be easier if we didn’t want so badly to be noticed. There are times when the ache to be normal is so deep, I would do almost anything for one day of not being ill. I often feel like I am caught between two worlds.
On the good days, I feel like I don’t quite fit in to the world of the chronically ill, even though I know that for most of us, the severity of our diseases ebb and flow. On the bad days, I definitely don’t feel like I belong in the world of the healthy. I don’t feel understood at all. And it’s on these days that I realize that our need to be noticed and acknowledged is of the utmost importance. Our silence can have deadly consequences.
National Invisible Chronic Illness Awareness Week is worth celebrating because it brings awareness and much needed attention to issues that profoundly affect the lives of many people.
Leslie Rott is 23 years old. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in sociology at the U of M. She currently authors the blog Getting Closer To Myself (gettingclosertomyself.blogspot.com), which chronicles her journey with rheumatoid arthritis and systemic lupus.
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