I’m Getting Real About Scleroderma

I’m Getting Real About Scleroderma

Scleroderma and the Ordinary Girl

I’m horrified to discover that I’ve been keeping a secret from myself, locked away in my subconscious. It has to do with my scleroderma and what I appear to have been secretly believing about it.

I’m not sure why I haven’t stumbled across this bizarre, hidden thought process before now, or how it came to be in the first place. However, it seems that it has been tucked away out of sight, lurking in the underbelly of my belief system, festering away on its own.

The problem is I had thought that my systemic scleroderma would somehow shrink and go away. I realize this is a blatant disregard of all I know to be true about the disease, and the most perfect example of denial.

I’m unsure what has finally brought this faulty belief to my attention, but I suspect it is because I’ve been so sick lately. My immune system is struggling with the various viruses and bugs that accompany the change of seasons, and complications have come from this. My existence has become quite limited, particularly when it comes to managing social outings.

Scleroderma arrived and made itself at home within my body at some point in my life. I’m not sure how long it has been a part of me, as it may have moved in years before it started to make its presence felt. It may have been during primary school, perhaps before that. I did notice some signs that could have been scleroderma around adolescence.

Ah, yes, adolescence — the time in my life when I was self-centered and eager for new experiences and when life was filled with drama.

As a teenager, my dramas were relatively minor affairs and usually associated with attention-seeking behavior. These events were usually harmless and benign and typically petered out before the next one began.

Scleroderma is not harmless and benign and it doesn’t peter out and go away; if anything, it gets increasingly worse. The disease has worn out its welcome with other people, and they become uncomfortable when they realize that their words of concern won’t change anything.

I believe that just as the topic has worn out its welcome with others, it has also worn out its welcome with me. I wonder if subconsciously I had thought the course of my disease was going to be like my teenage dramas. The other day when I was dealing with yet another urinary tract infection, I caught myself thinking: “I hate the way scleroderma is real.”

In that moment of realization, I knew it was time to grow out of my old adolescent beliefs about temporary dramas and the notion that I was immune to misfortune.

So, here scleroderma sits, an unwelcome resident in my body. Do I make friends with the disease, offer it a comfy seat, and get to know it, or should I drape a fancy tablecloth over it and pretend it’s not there? Perhaps I could try to turn it into something useful, like a stand to hold a vase of flowers?

Regardless of how I deal with it, scleroderma has moved in and is here to stay. No dramas — just the cold, hard truth. Scleroderma is real — it’s time to grow up and accept the reality.

So, I’m off to get my big girl pants on and make a plan. I’ll keep y’all posted on my progress.

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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 Services, and are intended to spark discussion about issues pertaining to scleroderma.

One comment

  1. Chris Nickerson says:

    Dear Kim. You are wrong. Over time my systemic sclerosis has shrunk and gone away, while leaving me with war damage which I have mostly learned to deal with.

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