It’s maybe seven years ago, February, midday. The pea-soup-green classroom, a science lab of some sort, is packed with second year medical students. They fill every seat behind the rows of black benches and crowd onto window ledges in the back.
I sit before them on a metal stool, dressed in my favorite red wool pencil skirt, a black and beige tweed jacket, black cashmere sweater and rainbow scarf, stockings, black pumps. I want to look my best, not like a suffering patient with scleroderma.
I have come here, to Boston Medical School, to help would-be physicians learn about this rare and complicated disease, at the request of my rheumatologist’s research fellow. I’ve helped out several years in a row, so I know the drill: The fellow asks questions and I describe my symptoms. Then the students have to figure out which auto-immune disease I’m describing—rheumatoid arthritis, lupus or scleroderma.
I summarize the disease’s onset—fatigue, puffy fingers, fleeting joint pain in my late ‘20s; pleurisy, thickened skin that migrated from my fingers to the backs of my hands halfway up my forearms in my early ‘30s, facial skin tightening that made it uncomfortable to blink, problems swallowing. I tick off more details. Severe Raynaud’s. Calcium deposits, digital ulcers and infections. Friction rubs in my wrists. A miscarriage at 6 weeks. Pre-eclampsia and premature birth of my younger daughter.
The skin tightening, of course, is the giveaway, and several suggest the correct diagnosis of scleroderma—to be specific, limited systemic sclerosis, explains the fellow. Then it’s time for the med students to ask their own questions.
I am always surprised by how tentative they are. I’m one of the first real patients they have met in their medical training, and they stick to the technical details, nothing really personal. Do I get short of breath when I go up stairs? (Sometimes.) What triggers numbness in my hands? (Cold weather, but also a change in relative temperature, like going from 80 degrees outside to 72 degrees inside with air conditioning.) Have I experienced any skin changes on my torso? (No. That’s a sign of diffuse systemic sclerosis, which tends to be much more severe. My skin has actually loosened somewhat with time, thanks to medications, excellent health care and good luck.)
Our session flies by. At the end, I let the students feel the backs of my hands. Their fingers flutter over my skin like butterflies. They are most appreciative. I leave with a sense of accomplishment, that scleroderma will no longer be just another diagnosis to memorize from their textbooks, but something tangible. Maybe, just maybe, after they’ve completed their training, one of these young physicians will be able to diagnose this disease early on and save her patient at least some irreversible harm.
I am also exhausted. There is something about sitting in front of that group, good as it is to teach, that makes me feel like a bug under a microscope. The discussion among the students and the fellow, as they explore my symptoms, is both theoretical and specific. I am reminded of all the scary things that could go wrong—kidney failure, interstitial lung disease, pulmonary hypertension, GI problems, heart issues, on and on.
I understand this discussion—it’s a necessary piece of the students’ medical education. But it depresses and angers me, too. I am not a litany of symptoms and would-be symptoms. I’m a whole woman who has been living with this disease for far too long.
That’s why I dress up. I want to make it clear to the students that I am much more than my scleroderma. Yes, it affects every aspect of my life. But it does not define me.
This is my 100th blog post. Though I haven’t taught second year med students about scleroderma in a long time, I have chosen to share my life with this disease in the blogosphere for some of the same reasons. I want to educate—about not only what it means to live with scleroderma, but also what it means to live with chronic illness.
The more I have written over nearly two years, the more I find myself wanting to share what I’m learning about living fully. We are a society obsessed with categorizing, labeling, one-upping. Health, wealth and beauty guarantee high social status. Those qualities are compromised by chronic disease, especially scleroderma.
The older I get, the longer I beat the odds on this disease, the less I care about those status markers. What I value is my ability to make the most of each God-given day, to nurture loving relationships, to put my talents to good use. And that’s what I’ll be writing about more in the weeks and months ahead.
To all of you who have subscribed to this blog since Post #1 and stayed with me, my profound thanks for your support and continuing enthusiasm. To those who have joined along the way, I’m so glad you’re here.
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.