Celebrating the Bravery of All Scleroderma Warriors

It’s the middle of summer here in New Zealand. Today the temperature reached 91 degrees Fahrenheit — we Kiwis consider that pretty hot for Down Under.  

During the summer months, Christchurch puts on many outdoor events, and Max and I decided it would be a great idea to attend a live outdoor concert.

Once we arrived, I sat on my deck chair taking in the wonderful sounds of Jefferson Starship and Toto, and enjoying the atmosphere. People-watching was fun, the offerings from the fast food stalls were delicious, and, of course, no rock concert is complete without that sweet waft coming from the hardcore hippies down the front smoking up a storm.  

However, as usual, I had to put up with the many “minor inconveniences” that having scleroderma brings. One, in particular, came to my attention when I found myself trying to tap my toes to the tunes. Alas, like my fingers, my toes are stiff, sore, and beginning to contract. Tapping out the beat was too painful, so I settled on adapting to the pain and using my hand on my knee, but though it wasn’t the same, I put up with it (as all scleroderma warriors do).

Now, I am not writing this column to moan about how scleroderma ruined the concert for me. I loved the show and had the best time I could have had. However, the toe-tapping “annoyance” started me thinking.

I have always believed that the thing that bothered me the most about living with scleroderma was the sheer volume of those painful, inconvenient symptoms and their consequences in any one day. But in reality, these are just the tip of the iceberg. The crucial thing about each of these small events is that they all have deeper and potentially critical consequences.

For example, when I apply my makeup, I notice the foundation collecting in the wrinkles above my upper lip, which makes them look even more obvious. The makeup covers the telangiectasia on my face. It’s annoying, and however minor this “scleroderma makeup dysfunction” may seem, the core of my self-esteem takes a knock when I have to go out knowing I don’t like the way my face looks.  

Each time I attempt to help with the household cleaning, my fingers become painful. However, I take more pain relief and put up with it and do the best I can. While the pain in my fingers isn’t life-threatening, the bigger picture is that my husband often has to redo the cleaning because I can’t get my fingers to do it properly. There goes another assault on my self-esteem; it doesn’t help my feelings of inadequacy, not to mention the anger and resentment I have toward the disease.

Gone are the days that I have enough puff to sing along to my favorite songs — not a huge deal, perhaps? However, the deeper implication is that back in the day, belting out Journey’s “Don’t Stop Believin’” or Aretha’s “Respect” was a cathartic healing and grounding experience that contributed to my well-being at a deep level. I can’t benefit from this now.

When I look underneath this constant stream of minor scleroderma pains, inconveniences, and events, I see, in reality, a woman whose core gets a really hard knock with each one.

I also see a community of “scleroderma warriors” spanning the earth who are living the reality of constant knocks to the soul, often in the form of apparent “minor scleroderma issues” we have “learned to live with.”

We’ve developed so many resources by dealing with this disease: among these are strength, a fighting spirit, hope, and empathy. However, when I consider what lies hidden behind the plethora of apparent  “minor challenges” we face every day, I am certain that our collective bravery must somehow be bigger than this disease.

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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.