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 far more aware of how my skin influences people’s perceptions of 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 sense them glancing at the red spots that are sprinkled all over my body. I catch people looking at my pointy elbows and disfigured fingers. As awkward as this is, I certainly have never felt that my altered skin has jeopardized my safety. In fact, I can count on two hands the number of times I’ve felt truly discriminated against due to 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 the participants. I have never gotten a massage in my life because having to explain the details about my rare disease, tight skin, and the red spots that carpet my entire back doesn’t sound relaxing. These massages were being given to fully clothed people on tables that were lined up in the open gym area. I thought it would be my chance to get a quick massage while avoiding being 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 give me my massage. Instead, she avoided all eye contact and mumbled something about how I really should wait until after I rode the bike for my massage. I questioned her, pointing out that all the other people on the tables hadn’t cycled yet and I was told 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, which 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, nor do I think this inconsequential incident means I understand what many people endure daily. Yet, 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 (most 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 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 place 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 there is a problem and starting an honest conversation. Now more than ever, I hope our country is ready to start talking.

*This article originally appeared in my weekly column on  Scleroderma News 

*Does This Hospital Gown Come With Sequins? is now available in paperback