At age 10, I was diagnosed with scleroderma; a chronic autoimmune disease which literally means “hard skin,” and strikes women three times as often as men. At best, scleroderma causes disfigurement, impacts mobility, changes the texture of one’s skin (mine is tight, shiny, and lacks elasticity), and some develop red and purple spots, or telangiectasia, on their bodies. At its worst, scleroderma can attack internal organs and be fatal. I consider myself very lucky to be living with scleroderma, since the other option would be dying from scleroderma.
My doctor says that I have more red and purple dots sprinkled over my body than any patient she has ever seen—not exactly the claim to fame a woman hopes for. I religiously apply three layers of concealer to my face every morning before I let the world (beyond my family) see me. Sure, I may look like I’m caking on my makeup with a butter knife, but that beats the alternative; watching everyone I meet recoil in fear of catching some horrible rash, which really isn’t a rash at all.
My legs and arms are skinny, permanently contracted, and resemble tree branches.
I have a permanent ostomy bag, multiple jagged scars across my mid-section, and my fingers and toes are a mangled mess:
Yes, I’m sexy and I know it. When I see articles about getting bikini ready for summer, I want to gag myself with a snow shovel!
Like many women, I use makeup to hide my imperfections. What sets me apart from most is what I feel the need to conceal. Since my diagnosis, these red and purple spots have invaded almost every inch of my body. My legs, back, arms, and especially my face are generously peppered with them. These blotches (my unique trademark) have contributed to low confidence and self-loathing for three decades. I’ve gone to great lengths to hide my spots from the world, my job and my community.
In college, I would get up early, shower, and apply makeup before anyone else in my dorm woke to avoid being “spotted” without the veil of cosmetics. Later, when I was selecting a wedding dress, I didn’t want anyone but my mother in the fitting room so that fellow shoppers or salespeople would not see me and fear I was contaminating the dresses with my awful disease.
FYI, scleroderma is not contagious. On the rare occasion that I go to the pool or beach, I wear a tee shirt and shorts over my bathing suit. It could be 110 degrees out and I won’t ever leave my house wearing just a tank top. Hell, I won’t even take my trash to the curb without first “putting on my face.”
The crazy thing is, I’m not doing this out of vanity. During a traumatic near-death experience in my early 30s, I spent 218 days in the hospital, including long stints in the intensive care unit. I was temporarily paralyzed, on a ventilator, and held hostage by ICU Psychosis.
Obviously, I had bigger issues to tackle than who saw me without makeup. Even then, though, the first day I could physically do so, I began dutifully applying my cosmetics. I get enough weird looks from people when I do conceal my face (clothing can only do so much to cover the rest of me). Deep down, I just don’t want to look different. I don’t want everyone thinking that I have some horrible disease, even though I guess I kind of do.
I’ve spent years trying to find the perfect concealer. There are some great products out there, but most are no match for my spotted complexion. I either end up looking like I’m wearing a mask that could be chiseled off (see exhibit A), or like I’ve got a bad case of the measles. Every day, I face the mirror and wonder if I should apply just one more layer of foundation. Will that extra application be the perfect finishing touch, or end up coming off all over my clothes, phone, and sunglasses? Most mornings, I choose the latter and wind up looking like I smeared on my makeup like a child experimenting with finger paint.
I am desperately trying to stop applying my cosmetics with a spatula. When it comes down to it, I’m not afraid or ashamed of how I look without any makeup. I already know what I look like. I’ve been staring at these spots for 30 years! So why won’t I open the door for the plumber unless I’m in full makeup? It’s because I am terrified of receiving the inevitable horrified reaction from said plumber. Nor do I think my plumber is particularly interested in my learning my riveting medical history.
I am a huge fan of feeling good about our exterior reflections. Women should be empowered by their beauty and never apologize for wanting to present themselves well. If cosmetics, Spanx, or other enhancements help you feel confident, I say go for it!
But, let’s not let the face in the mirror define who we are. I want to derive joy from my appearance as much as the next woman, but I’ve learned from a young age that can’t be a deal breaker for me. I try ("try" being the operative word here) not to hinge my happiness on what the world sees when they look at me.
It’s tough to strike a balance between wanting to look good and not self-destructing if you gain a pound or get a canker sore. My personal mantra for this crazy balancing act is to ask myself, so what? So what if I look deformed and people stare at me when they meet me for the first time? What does that have to do with the essence of my character?
Believe me, this mantra is not foolproof. I’ve spent three decades trying to embrace my inner beauty and shake off the lingering stares I get from strangers.
Obsessing about my looks will not cure my disease or change my weird appearance. I’ve devoted more time than I care to admit envisioning how much prettier I would have been without scleroderma. I still go into stores pretending that I’m in an alternative universe and picking out the imaginary wardrobe that my fantasy non-scleroderma-self could buy. Most women I know would like to be taller/shorter, have curlier/straighter hair, be thinner/curvier, have bigger/smaller boobs, butt, nose, chin, forehead....I could go on all day, but I’m even annoying myself.
At what age can we just say, who the hell cares and spend our time actually living life, rather than conjuring up some cooler alternative version of ourselves that we will never see? Perhaps never. My grandma put on her lipstick in the nursing home right up to the day she died. I’m not an idiot. I know society places an insanely strong emphasis on beauty. But at 40, I am trying to soak in all the joy I can and live comfortable in my own thick, deformed, splotchy skin.