How It Feels To Look Rare

Updated: May 31

Life has a tendency to throw “surprise” grenades along the path we are carving for our future. Some surprises are good, or bad, but it’s conclusive that life doesn’t always go according to plan. The way we react and handle new instances can shape our attitude towards them as well. Disease can be a very heartbreaking grenade thrown into our lives that sometimes feels more like an atomic bomb.


Endless changes pass through ones life when they’re diagnosed with an illness, especially if it is rare. Since I was diagnosed with scleroderma 9 years ago, I’ve never ran into someone in public who also has the disease. Not all scleroderma patients have visible symptoms, but I can relate more to those who do. The only way I can see others with my same plight, is by going to support groups, conferences, or scleroderma related fundraisers. It could be said that we are one in a million!


For some individuals, scleroderma discolors the skin and tightens fingers and joints, to the point of looking disfigured. It’s an interesting, and difficult, journey learning how to muster up the courage to go out in public with visibly disabling symptoms. When someone else is with me, I’m able to shut out the stares, versus when I go out alone. Sometimes it causes anxiety if I’m at a concert, in a large sea of thousands of people, I’m the only one that looks this way. When alone, I need help grocery shopping from strangers. Usually the person behind me, in line at the checkout counter, watches me struggle to take items out of my cart. I know they’re curious but don’t want to impose, although sometimes I wish they would!


Unrealistic beauty standards plague advertisements, television, and social media. Filters can be applied to pictures to make your skin and makeup look better. Curves are photoshopped down to skinny, and some who are skinny receive surgery to get curves. It’s a never-ending cycle that is easy to get caught in. But there is no filter for chronic illness, it is very real and hard to hide. I could cover myself from head to toe when going out in public, but that would defeat the purpose of raising awareness. Battle wounds from a war are seen as courageous, and I will treat my scars just the same.


Left unfiltered, little makeup. Right, filtered with makeup.

The good thing about looking rare is that people remember you. They remember your smile, because it seems to shine a little brighter. They remember how you overcome whatever is in the way, despite what it is you’re going through. When one has an illness, their aura pours out stronger since they have learned to live through severe circumstances. We have to learn to embrace our differences because they’re what makes us unique, and unforgettable.

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