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I’m Revealing What My Body Looks Like Without the Benefit of Clothes

There’s something bizarre about all of us. We all conceal our oddities in our own ways. Most of us get to choose when and to whom we reveal these peculiar dimensions of ourselves. I can hardly remember a time when I had the luxury of choosing.

Regardless of whether I want to expose my abnormalities to the world, my physical appearance spills the beans. Warning: I’m about to reveal what my body truly looks like without the benefit of clothing (gasp). Don’t worry, no nude photos are coming your way. But if I’m really coming out of the “scleroderma closet,” I’m determined to come all the way out.

The heavy makeup that cakes my face tells everyone I’m hiding something. Upon first glance, most people don’t know I’m masking a face scattered with large and tiny red spots, telangiectasia. These red dots and splotches splattered over most of my body are a symptom of scleroderma, the autoimmune disease I was diagnosed with at age 10.

If someone who just met me were to glance at my neck, they might be able to detect the small scar in the center of my throat left behind when I finally had my tracheotomy tubing pulled out for the last time. Most people don’t notice the scar, but I see it all the time. If only it was still 1984, when turtlenecks were all the rage.

Then there are my arms. I love Chicago winters because this season allows for my clothing to partially camouflage my skinny limbs that resemble bent tree branches. If my arms are bad, my hands are worse. I simply can’t hide my hands. Each permanently bent finger is sprinkled with telangiectasia (red spots), my own unique trademark.

scleroderma body image the mighty

Next, there’s my stomach. Even with baggy clothing, it’s obvious that I’m trying to hide what’s lurking underneath the fabric of whatever shirt I’m sporting. I know many 40-year-old women who’ve had two children may not want to be seen in a bikini, but I promise I’m not just talking about a little extra flab. My midriff is a horrifying roadmap of scars and other surprises. With each scar lies a reminder of the seven months I lost while hospitalized.

First, there are the C-section scars. These scars don’t bother me a bit; they remind me of my two most precious joys, my son and daughter. Just north of my C-section scare dangles my 9-inch ostomy bag, a constant reminder of the catastrophic emergency colectomy performed less than three weeks after the birth of my daughter. When I empty the contents of my ostomy bag, I try to block out the vision of my mother turning ghostly white and my husband looking as if he might pass out. These visions of my loved ones being told the 48 hours after my colectomy would determine if I lived or died still haunt me. I try to shut out the fact that my school’s administration had grief counselors on standby, just waiting to counsel my students and colleagues should the worst happen.

Next are the really bad scars, like the 9-inch jagged scar that zigzags across my left lower abdomen and curves around my side. It’s a reminder of my darkest days. When I see it each morning, I can’t help but sometimes hear the stampede of the transplant and crisis team racing into the operating room in a frenzied attempt to save my life. I try hard not to picture my mother and brother reciting psalms over my half-dead body.

Yikes! The above paragraphs are dark and heavy. It’s hard to believe, but I’m actually a pretty upbeat person. Take a moment and remember that I didn’t die and have made a remarkable recovery. Yippee! Let us now continue our delightful tour of my glorious physique.

My legs are skinny (like I wonder if that woman has a tapeworm skinny) and dotted with more telangiectasia. Finally, there are my feet. I walk with a slight limp. After lying immobilized in my ICU bed for so many months, my feet hung like weeping willows. ICU neuropathy plagued my feet with an intense sensation of a thousand fiery needles relentlessly piercing them. I was often told I may never walk again. After nine months of rigorous inpatient and outpatient physical and occupational therapy, I’m thrilled to be left with just a small limp and neuropathy.

After reading the above description, you may be wondering what the hell happened to me. My story is so complicated I could write a book about it — in fact, I have written a book about it. I’m an ordinary person who, with the support of hundreds, survived some extraordinarily bad crap.

So why do I want to offer the public a glimpse into how I glide through life with my gorgeous face and smoking hot body? All too often women (and some men) allow themselves to be defined by outer beauty. Our feelings of self-worth shouldn’t be based on our appearance. With this blog, I’d like to explore a different approach to measuring our value in society. Instead of using our time worrying if we‘re too fat, too ugly or too whatever for the world to love us, why don’t we focus on more important issues, like how to be a nice person, make people smile or even work toward world peace.

I judge myself and others based on outer appearance constantly. I’m no saint; I just think we all should try harder not to “judge a book by its cover.” I’m not claiming to be the ugliest person on the planet and hoping for your pity. I know there are people far less aesthetically blessed than myself out there. I simply take issue with our society’s obsession with outer beauty and want to combat that. On many levels, I’ve reconciled that my appearance does not reflect who I really am. I hope other readers can find comfort and inspiration in that.

A version of this post originally appeared on Comfortable in My Thick Skin.

The Mighty is asking the following: What’s one moment you saw your disability and/or disease through the eyes of someone else? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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