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What It's Like Having a Membership to the ‘You Don’t Look Sick’ Club

Nearly 20 years ago, I had a craniotomy for a benign brain stem tumor that had become cystic. For the first months after the surgery, my head was shaved, my awesome scar on my scalp was visible, I sported a leg brace, and walked with a cane. I looked sick.

A few years later, I was diagnosed with Crohn’s disease. I was fatigued, my eyes were swollen, and big purple welts developed on my shins. I walked slowly and cautiously because I thought I had broken bones in my feet. I looked sick.

Now, my hair covers the scar, the brace and cane are long gone, and no one is the wiser. I have been able to keep Crohn’s hidden as well. The prednisone kept me chubby, I can tolerate a wide variety of foods, and I have yet to require a feeding tube, surgery, or an ostomy. I don’t look sick.

But I still have Neurofibromatosis 1 (NF1) – the genetic disorder that caused the brain stem tumor. And I still have Crohn’s. It didn’t go away. It’s called remission. I still require the care of a neurologist, orthopedic, ophthalmologist, gastroenterologist, endocrinologist, and dermatologist. Whew!

Early in my career as a professional patient, I felt a certain sense of pride when someone told me that I didn’t look sick. I viewed it as a compliment and took it as the proverbial pat on the back. I felt as if I had been doing a good job, I was getting better, and maybe I wasn’t so sick after all. I loved being a member of the, “You Don’t Look Sick” club!

Oh, but there is a dark side to the club. I feel it when a new doctor looks me over and asks (usually with their eyes), “Why are you here wasting my time?” I search for a way to let them know that I am not exaggerating or making shit up. Believe me, I know, I look a hell of a lot better in-person than I do on paper!

My heart sinks when someone says, “NF huh? You don’t look like the Elephant Man.” I don’t even know where to begin with that! Spoiler alert: Neurofibromatosis is often called the “Elephant Man disease.” However, Joseph Merrick (‘The Elephant Man”) did not have NF1 but another disorder called Proteus Syndrome. Google it.

My eyes roll when someone says, “You don’t look like you have Crohn’s.” Think about that for a minute. What is the point of a statement like that? Is that a challenge? Sounds like a challenge.

I think people (self-included) get images in their heads of what someone with a disease should look like because they saw it on TV or a friend of their second cousin had the same thing. We think we know more than we actually do. Chronic illness is called “chronic” for a reason. It is always there. NF1 is chronic, Crohn’s is chronic. There’s no cure for either of them. While I don’t look sick right now, I am sick, albeit chronically. I have a lot going on behind the scenes: Meds to take, blood to get tested, body parts to scan, and doctors to see.

So go ahead, tell me I don’t look sick. Or, better yet, tell me I look good and I will say, “Thank you!” And we can leave it there, compliment given and compliment received.

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Thinkstock Image By: QueenMargo