Twenty-eight years ago this month, I first heard the word scleroderma. I was sitting in a rheumatologist’s exam room, a few weeks after returning from my honeymoon with Al, trying to wrap my head around the fact that I had some kind of autoimmune disease that was at the root of all the strange symptoms I’d been experiencing for the past three years.
We talked about my history of extremely cold, blue hands; the swelling fingers, migrating joint pain and photosensitive skin; the fatigue that made me feel as if someone had turned off a switch in my brain; the positive antinuclear antibodies blood test that confirmed my immune system had gone haywire and was assaulting my healthy tissue.
My rheumatologist, who has since become one of my most stalwart partners in combatting this mysterious and complex disease, thought I had one of three possible illnesses: rheumatoid arthritis, lupus or scleroderma. I went home, emotionally numb, and cried with Al for a long time.
This was before the days of the Internet. I took out a book from the library about lupus to try to learn more. Scleroderma sounded so strange, so remote, I didn’t even entertain the possibility. Plus, I couldn’t find any information.
Slowly, as the skin on my hands and face began to tighten, the S-word became more threatening. I picked the brains of our physician friends. They were supportive and grave when I told them the looming diagnosis. Back then, the mortality statistics placed the odds of survival at about seven years from onset. I chose to ignore this.
But I had to find out more. With Al, I attended several meetings of a local scleroderma support group. Here I met people with much more advanced disease—mostly women, some with fingers bent like claws; others with shining, mask-like faces, unable to close tightened lips over teeth; still others with only nubs left of their fingernails.
The conversation focused on treatment options, presentations by local rheumatologists about the many complications of the disease, shared angst. I lasted about four or five meetings and then told Al I didn’t want to go back. Everyone meant well, but the energy was so negative, I couldn’t continue. So much of the conversation focused on each person’s individual problems. I found it terrifying. I didn’t want to identify with these people. Was I really going to end up like them?
In the years since, I have come to appreciate the value of support groups, which offer a unique opportunity to commiserate, share insights and learn from fellow travelers on this strange journey. But for the newly diagnosed, any encounter with information about scleroderma—whether in person or online—can feel like drowning in a tsunami.
There is so much that can go wrong: tight skin, painful joints, ulcers and infections, kidney failure, pulmonary hypertension, numb hands and feet, lost mobility, fatigue, disfigurement. And that’s just the short list.
Today you can read for hours about the many permutations, complications, risks and challenges of scleroderma with the click of a mouse. The Internet is loaded with facts about the disease and latest treatments, commentary from doctors and patients, current research and disturbing images of worst-case scenarios, as well as plenty of bogus treatments and BS. If you don’t know how to filter it, if all you have is a diagnostic label, you can scare yourself even sicker from worry about all the bad stuff that might happen.
But scleroderma is a disease that manifests uniquely in each individual. That’s why, after three decades, I read to stay informed, but for the most part, I don’t immerse myself in scleroderma content, even as I write this blog each week. To some extent, this is because I’ve learned enough from experience and the gift of excellent physicians that I have a solid working knowledge. But it’s also a protective habit I developed years ago—to focus on what I need to know to get appropriate treatment and stay away from the long list of what-if’s.
This goes to a basic fact of living, no matter what your health: If you knew all the bad things that were going to happen to you over the course of your lifetime, you’d never get out of bed. If someone had told me 30 years ago, when I first started having symptoms, all the difficulties that were to come, I don’t know if I would have been able to cope. Time, experience, quality medical care, supportive family and friends, inner resources you didn’t know existed—all combine to enable you to manage challenges you never thought you could handle.
Years ago, my high school boyfriend’s mother said to me, “No one goes through life unscathed.” I was only 17 and had no idea how to respond, but I was deeply shaken. She was right, of course. But she didn’t tell me the other piece of that truth—when the worst hits, you learn what you’re truly capable of.
I wish I had never heard of scleroderma. And yet, I’m much stronger for it. I wish there were other ways to have come to that self-knowledge. But here I am. Some days I get scared about what still might happen, where this all will lead. I make lists and pepper my doctors with questions. Then I try to focus on the present moment, which is all we really have, and do my best to make the most of each day. I remind myself to be grateful to have made it this far. And keep ignoring the odds.
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.