Don’t Cry for Me, Scleroderma

It was one of those “oops!” moments — the express elevator down to your gut when you realize you hit “Reply All” by mistake. My inbox dinged — a lame substitute for the “You Got Mail” jingle — and I read the message in which the sender referred to me as “a cripple.” A minute later, I received another email from the same sender apologizing profusely for the inadvertent message and their crude description of me. 

Wow. No one had ever called me a cripple to my face before. Sometimes I can see it in their eyes, when they appear sympathetic or curious or even repulsed. The term cripple brought up images of a forlorn Tiny Tim with his sad, wooden crutch. It’s a throwback word like “hobo” or “tramp” from the romanticized pre-shopping carts era when the homeless bundled up worldly goods in a pillowcase, tied it to a stick, and jauntily ended each day with a tin of Bush’s Baked Beans by the campfire. 

Up until five years ago, I didn’t announce my scleroderma. My fingers curled up only slightly, and the only other visible sign was that my face was as taut as a 20-year-old’s. When envious friends asked how I looked so young, hoping to get the name of the plastic surgeon, I would wave it away and joke that it was an ancient Chinese secret.

Well, the secret is the overproduction of collagen caused by an immune system gone wild. But I didn’t tell them that. Scleroderma is too complicated to explain to most people; by the time I get to the gastrointestinal issues, I often see their eyes glaze over. 

But my fingers started to constrict like a bad Jim Carrey movie. They went from being bent to being claws, and now they’re coiled like a Slinky. My condition became in-your-face, and I could no longer hang on to that “normal” label.

At first, I was uncomfortable. I didn’t want scleroderma to be my identity. I’ve heard new acquaintances speak in well-meaning but hushed tones behind my back.

“She’s got some kind of tight skin condition.”

“Oh, so that’s why she looks a lot younger.”

“Yeah, I heard sometimes it takes them early.”

“Well, she definitely should have an open casket. Her face is to die for!”

Rare disease patients often receive three main types of advice. The first comes from medical specialists who are educated, have years of experience, and have participated in research or collaborative projects. They understand the complex conditions that affect a patient’s physical, mental, and emotional state.

Second is the advice from other rare disease patients and caregivers: which treatments worked, what side effects occurred, or who the best specialist is to see for specific issues. 

Finally, there’s the layman with good intentions. Although you only told them about your condition minutes earlier, they become a fountain of uninformed counsel, telling you what to eat or not eat, which medications to take or avoid, and which late-night TV gimmick you need to buy now to heal your condition.

Over the years, in my naiveté and mislaid optimism, I’ve guzzled down quarts of foul, boiling hot traditional Chinese medicine tinctures (now those are ancient Chinese secrets), sought prescriptions for cure-all medications championed in chat rooms, and weathered a very sobering vision of an archangel brought on by a night of meditative numerology chanting. Receiving good advice from a layman is like winning the lottery, and I’m still waiting for my grand-prize Dream House. 

But the tough thing about the layman is that they’re usually someone you know: the elderly aunt who always sends you birthday cards with $5 tucked inside, the thrice-divorced sorority sister with a 21-year-old fiancé, the mail carrier who doesn’t let rain, snow, or the gloom of the night stop them from telling you about the latest miracle treatment. How I wish we could stick to discussing politics instead. The road to hell is paved with good intentions.

I don’t want scleroderma to be my “identifier” because I’m more than my illness. Sure, I’ve got some broken bits, but who doesn’t? 

(Sung to “Don’t Cry for Me Argentina,” with apologies to Andrew Lloyd Webber and Tim Rice.)

Don’t cry for me scleroderma
The truth is I never liked you
Even in my mild days
My bad existence
I’ll keep my hands warm
Won’t you keep your distance?

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.