Years ago, when I first learned that I had one of three possible auto-immune diseases—either rheumatoid arthritis, lupus or scleroderma, pick your poison—I was terrified. I knew RA could be crippling, and I knew that lupus had killed one of my literary heroines, Flannery O’Connor, at 39. I’d never heard of scleroderma, but the more I read, the more overwhelmed I felt.
Al and I were newly married, and we were both in shock by my emerging diagnosis and how my body was changing. For a wedding present, knowing I wanted to get back to playing music after a decade of dormancy, Al had my violin repaired—the fallen sound post repositioned, the bridge straightened and the strings replaced. But the first time I picked it up, I realized that I could no longer wrap my fingers around the neck or press on the strings, let alone flex my wrist for bowing.
As my hands got stiffer, my joints became more inflamed and I felt more and more exhausted, the simplest tasks—like pulling on a pair of socks or filling a pot with water and placing it on the stove—became difficult and painful. One weekend, out of the blue, I experienced a sharp pain with each breath; a trip to urgent care revealed pleurisy. Sensitive to cold from childhood, my fingers and toes now flickered numb throughout the day. I still didn’t have a definitive diagnosis, but my rheumatologist correctly suspected scleroderma.
Neither of us knew how to talk about it. When we first started dating, Al’s mother had warned him that I seemed too fragile. Now it appeared that her words were a harbinger of disaster. We sought help in couples therapy, which opened the lines of communication. But we were both still scared.
When we got together with friends, I would inevitably pick the brains of any health care professional in the crowd (of which there were many, all of them supportive and very concerned). This was before the days of the Internet and before there was much detailed information about scleroderma available to the general public. Al went with me to a scleroderma support group, but I found it depressing rather than uplifting, so I quit after several sessions.
Friends and family were concerned and tried to be helpful. But the reality was that scleroderma is so strange and obscure, that no one had a point of reference. Our physician friends were aware of the severe risks, but they couldn’t predict the course, any more than my rheumatologist.
I soon discovered that, despite everyone’s best intentions, most people really didn’t want to hear about it. We were all in our thirties, friends were having children and building their careers, and most were quite healthy. I was a newlywed the second time around, desperately wanting this marriage to work, facing my mortality. Not the stuff of social banter.
If I did start to share, I would typically get one of several reactions:
People would listen but soon get distracted or change the topic because they couldn’t deal with it. Or they’d listen and then tell me about someone else they knew with an even worse condition, perhaps as a way to relate my predicament to their own experience, but it always made me feel unheard. So I’d shut down.
People would try to offer advice. This was always well-meaning, but most of the time was of no help, since they didn’t really want to take the time to understand what I was dealing with because it was so threatening. So, again, I’d shut down.
People would feel sorry for me and try to mother me with their concern. Of all the reactions, this was the worst. If there is one thing I can’t tolerate, it’s being treated as an invalid.
While I appreciate the underlying compassion, I never want to be handled as if I can’t do for myself. Ultimately, that level of smothering concern is more about the helper’s need for control over the unknown than the helpee’s need to be cared for. It completely undermines the fighting spirit that’s so essential to managing this and any other chronic disease.
There’s a fine line to be tread here, of course, because I also have had to learn to ask for help. There are many things that I can’t do easily anymore, and I’m no longer ashamed to be assertive in requesting assistance.
But my family and closest friends all know by now how important it is to me to continue pushing back, managing this complicating disease, outsmarting it, accepting it, running with it, on my own two feet.
Al, to his great credit, has never babied me, even when sometimes, in weaker moments, I wished he would. For the 27 years we’ve been married, with scleroderma as our third partner, he has always helped me when needed, but never expected less of me than I do, myself. And that has been one of my most powerful medications.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.