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
Hi, I’m Kelly. Here are a few things you need to know. Over the years I have racked up quite a few medical issues, a craniotomy for a brain stem tumor in 1999 and a diagnosis of Crohn's disease turned my world upside down. I've been doing my best to navigate but the road has not always been a smooth one. Lately it seems managing my medical life has become my full time job! Hence the label: Professional Patient. In the spring of 2016, I was inspired to write my first blog post in response to something I read on The Mighty. After they published it, I felt compelled to keep writing. I wrote a few more entries for them and other sites before I decided to take the plunge start my own blog. And that was how “Write Down the Middle” was born. For me, writing is a healing process. I write from the middle-ground perspective of a situation. I can usually see the not-so-good side right away but if I stay with my feelings, I eventually see the value. Not in a "Pollyanna" way, more out of curiosity and a desire to understand. My blog is about how I experience life as a professional patient, it not a substitute for medical advice or treatment. If you find something helpful to you, I’d love to know and certainly wouldn’t mind a like and share. All I ask is that you do not claim my words as your own, and acknowledge the writer accordingly.
kelly-ellur