Living With Scleroderma & Sarcoidosis Makes Me Not Dead.
As a scleroderma patient, there are things I cannot control, but as a strong-willed control freak, I happily manage to control a thing or three.
Recently, Facebook banned a photo of a woman with scleroderma, next to another scleroderma patient who did not look like she had scleroderma. She did it to show just how different scleroderma affects each and every patient. Since Facebook banned the pictures, she has encouraged scleroderma patients to share pictures without make-up. I love this. It’s a bold step into the limelight for many patients who wear make-up and long sleeves to avoid the stares from strangers. After twenty years of hiding changes to my body, I am not ready to step into the patient limelight. Why? Am I chicken-sh*t? Not necessarily. Hear me out…
I admire patients who step out into public with their teal shirts answer questions and enduring the stares. It’s not that I don’t want to talk about it and educate others about scleroderma and what they can do, because I’ve been doing it for twenty years. I just want to do it in controlled settings. For example, I won’t leave my apartment without wearing make-up, and something with sleeves that will minimize the appearance of my hands. No, it is not because I’m ashamed. It is because I don’t want to be stared at, or begin talking to strangers about my very personal medical care. In the 1990’s I would tell people about scleroderma to anyone who would listen. I would show them my hands, explain my care if they asked about it. I guess in a way, I am burned out on the person to person explanation of what I have, what I do and how I cope. Now, I have a blog with years of my personal experiences. Anyone can access it. Of course I want to meet new people, but not to talk about a medical condition that has caused me to spend years of my life dealing with my medical treatment.
Let me put it another way; taking care of my health is my job. It’s my forty-plus hour a week job. For those of you that work forty hours a week, would you like to discuss what you do every time you go to the grocery store? Look, I know scleroderma patients need awareness. I just choose to do it my way with the written words of my blog, and getting out and doing things not related to scleroderma.
At first, I thought I was a coward. Why hide? Why won’t I step into the limelight and show the damage sceroderma has done to my hands and face? Some of you who follow my blog are familiar with my “vanity”. I place vanity in quotations, because what some perceive my actions as vain, is not. Do you want to know why I refuse to be photographed without make-up and un-tag myself or ask to have my picture taken down for reasons only I understand? Because I do not want to be remembered for having scleroderma. I know, it doesn’t sound nice, but it’s my truth. I’m not making excuses, I’m sharing because I can’t be the only scleroderma patient who feels this way. When I die in fifty years of old-age, I do not want to be memorialized on a website that talks about my fight against scleroderma. I want to be remembered for my sense of humor and my amazing son who will grow up to do things to make the world a better place.. When I die, I do not want anyone to say, “we lost another sclero-warrior”; Or that I’m now a “sclero-angel”. I just don’t.
Is this a severe case of denial? Am I oblivious to the possibility that the progressive, degenerative course of sarcoidosis I have in addition to the scleroderma? I’m not oblivious to it. I just don’t care to think about it. Not because I have a choice not to think about it. With every doctor’s visit I think about the fibrosis and granulomas, plotting to kill or disable me. When I don’t need to be focused on it, I just don’t.
And there’s the argument that, “Karen, the pain of scleroderma doesn’t allow many patients not to think about it.”
Yes, that’s true. I have experienced days and weeks at a time where I was in constant pain as my body hardened. I used to ask for it to stop, until there came a point in my progression that in order for scleroderma to stop, I would need to die. I just accepted that scleroderma would stop when I die. Then, I tried to figure out how to live while this was happening.
Right now, I have a stable prognosis. At one time, we thought scleroderma may have run it’s course, but it hasn’t. It’s going, and right now, it’s not going to kill me. So right now, I have to live. And yes, I want to blend and be not all about scleroderma all the time. I realized I needed to control how I share my experiences when a woman with damage to her hands by rheumatoid arthritis cornered me at The Comedy Store and fondled my hands in disbelief and crying while I politely tried to squirm away from her. Just because I share my story does not mean I have to stand there while someone looks at me and cries. I am not there to comfort them and tell them everything is going to be alright. I cannot be expected to do that, unless I am in a setting that gives permission to that. That includes comedy clubs, Starbucks grocery stores and anyplace I happen to be. I cannot tell other people I suffer, because I have the luxury of convincing myself that I do not suffer. Honestly, I don’t believe I’m suffering. There are times I do suffer, but the word suffering implies that I am constantly suffering. I get frustrated often. Sometimes, I’m in pain, but I cannot say to anyone that “I suffer from scleroderma”. When I hear that phrase, I hear, “scleroderma runs your life”. Yeah, in some ways it does, but I refuse to grant scleroderma that power in words and deeds.
Is that denial? No, it is not. I used to think I was in deep denial, but it is acceptance. That’s it. I control what I can. If I want to get up in the morning and go get coffee, it takes me 120 seconds to slap on some make-up before I step out the door. Not because I’m ashamed, but because I don’t want to draw attention to myself. Of course people shouldn’t stare, but they do. Not because they are a***oles, but because they are human. One reason human beings are here today is because of our pattern recognition. When we see something that falls out of the patterns we are used to, we are naturally curious, and curiosity results in stares and questions. Kind of in the way a celebrity will wear sunglasses or a hat. They just want to get a cup of coffee, and relax. So, if you’re a patient who doesn’t wish to be called a sclero-warrior and be referred to as a sclero-angel after death, that’s okay. Not because I say so. It just is. We don’t have to wear teal, or those damned bracelets of any color. We can educate people how we wish to, and not have to be thought of as suffering, or as heroic. Living with a chronic illness does not make us heroes. Living with a chronic illness just makes us not dead. How we choose to cope with it is our business. We don’t have an obligation to walk around like teal billboards, unless we wish to. And it we don’t wish to, that’s okay. Because those who do, are no better or stronger than we are. The just cope and share differently. Of course its admirable, but I refuse to feel badly because I don’t share 24/7. I do what I can. Some do more, some do less, but we all do what we can.