Finding Consistency in the Face of Scleroderma

I think I have been stuck in some kind of time warp. Either that or I have been unconsciously under the illusion that I haven’t really changed over the past couple of decades. However, I have, of course.

This realization was brought about recently when someone tagged me in a Facebook photo they had taken a few weeks ago. Quite frankly, I was horrified. I’m not quite sure what has been going on in my head, but for some reason, I appeared hugely different in the picture than how I envisioned I actually look. It was like I was in some kind of peculiar hall of mirrors in a fairground somewhere. I knew it was me, but my appearance just didn’t match the image I held of myself in my mind.

Scleroderma has had an effect on my face, and no matter how many of my friends say otherwise, that photo really made it obvious. The changes have crept up over time, and have caught me unprepared. It wasn’t just the facial changes either. Fat deposits appeared in places I never used to have them, brought about by steroid use and an inability to exercise to the extent I used to. Bent fingers and stiff tendons and muscles mean that I hold myself differently, and layers of clothing to stay warm mean I constantly look like a walking sleeping bag.

Not glamorous at all. Unlike the old days.

Change is always unsettling, and particularly so when it involves the human body; the very vehicle in which we must travel throughout the entirety of our lives. When I saw the photo, it felt as if the rug had been pulled out from under my feet. In my mind, I still looked the way I did in my 30s, when I was fit and well and didn’t have scleroderma. Perhaps I have been in denial, subconsciously trying to remain in a timeframe of my life that felt safe and secure. Somewhere that had no place for worry about longevity or end-of-life prognosis.

The photo brought me into the present with a bump. It has also caused me to look around with realistic eyes and realize that many other things are changing around me as well. Hitting middle age is also one of those times in the lifespan that brings about big shifts, and it seems I am in the midst of this process. Not only have two of our children reached adulthood, the third is hot on their heels, and Max and I are beginning to discuss what it will be like once our last one has left home.

Life feels as though it is becoming unsteady and a little frightening with so many things altering around me. Lately, I feel as if I cannot see anything familiar, not even my face, and sometimes I haven’t been able to find anything recognizably safe that I can hang on to so that I feel secure. 

All this was brought about by a single unrecognizable, and yet accurate, photo of myself. A photo depicting huge evidence of a disease that is not only changing my appearance, but also my life.

Perhaps the most ironic part of all this is that the very thing that has brought about these unsettled and unfamiliar feelings is actually the thing that is now a constant and steady part of every day: the scleroderma itself.

Going forward into the future and despite the changes my disease has brought, it also has become my grudgingly accepted, ever-present, and familiar companion. In a weird kind of way, at least I have learned how to live with it, and it will remain a constant in my life until it finally gets the better of me.

It seems fitting to finish with a song I’ve been humming while I’ve been writing this column. Please enjoy “Changes” by Langhorne Slim & The Law. 

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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.