I think about skin a lot more than most white people. I know that’s a really weird statement, but it’s true. Because my skin looks so different, I am quite aware that my skin influences how people perceive me. Having been diagnosed with scleroderma at age 10, I’ve grown accustomed to people staring at my skin.
I feel the lingering gazes when someone first meets me, and I sense them glancing at the red spots sprinkled all over my body. I catch people looking at my pointy elbows and disfigured fingers. As awkward as it is, I certainly never felt that my altered skin jeopardized my safety. In fact, I can count on two hands the number of times I’ve ever felt truly discriminated against because of my disfigurement.
A few years ago, I was at a cycling event to raise money for rare cancers. I signed up to cycle on a stationary bike and support my beautiful friend who is a cancer survivor. The fundraiser was held at a fitness club where professionals were giving massages to participants. I have never had a massage because having to explain details about my rare disease, tight skin, and the red spots that carpet my back doesn’t invite relaxation.
The massages were being given to fully clothed people on tables that lined an open gym area. I thought it would be my chance to get a quick massage while not having to be naked in a room with a stranger.
When it was my turn, I immediately saw that the massage therapist-trainer was terrified to touch me. (This was before I started writing and speaking freely about my disease.) I took the plunge and tried to be honest.
“Hi. I know I look fragile. I have a rare autoimmune disease that causes my skin to be tight and other physical deformities. It’s not contagious, and I promise, you’re not going to break me!” I explained with a friendly laugh and smile.
I fully expected her to reciprocate with a smile and proceed to the massage. Instead, she avoided all eye contact and mumbled something about how I really should wait for my massage until after I rode the bike. I questioned her, pointing out that all the other people on the tables hadn’t cycled yet — and that, when I asked, the woman who signed me up for my massage specifically told me it was best to relax and stretch my muscles before I cycled. The woman uttered some nonsensical response and turned her back to me.
The woman’s dismissive attitude deflated my sense of self-worth within seconds. I went into a bathroom stall and stifled my sobs the best I could. Why had she treated me so poorly? I had donated to the cause just like every other participant, and yet I was being marginalized and rejected for something completely out of my control. There I was, a 39-year-old mother of two, crying in a bathroom because some mean lady wouldn’t give me a massage.
I know what you’re thinking: “Boo hoo for you. So sad that you were denied a massage! Get over yourself and your ridiculous first world problems. Millions of people face real discrimination every day of their lives.”
I completely agree — and that is why I am willing to write about this embarrassing moment. I’m not proud that I was reduced to tears over something so utterly stupid and inconsequential, but this silly situation brings up an important question: If this isolated incident momentarily demolished my self-worth as a fully functional and educated adult, what do similar incidents (or those far worse than this trivial example) do to children and adults? What toll does discrimination take on one’s self-concept?
Imagine being shown in subtle and not-so-subtle ways that you’re not as good as someone else because of the way you look. Imagine being denied access to experiences because you’re perceived as different. Imagine the constant blows such rejection would have on your social and emotional development. Imagine feeling you are never quite as well-behaved, or beautiful, or intelligent, or kind because of someone else’s actions, based on perceptions that have absolutely nothing to do with you. Imagine having these feelings solidified, over and over, every time you step outside your door or turn on the news. Imagine having your self-worth chipped away from the moment you were born, simply because of your skin color, or your parents’ level of education, income, social class, or nation of birth. Millions of Americans don’t have to imagine. They live it every day.
I wish I could say I have some concrete way to contribute to a solution, but I don’t. I do know the first step to resolution is acknowledging the problem and starting an honest conversation. Now more than ever, I hope our country is ready to start talking.
[To learn more about my journey with scleroderma, visit Comfortable in My Thick Skin].
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.