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 days, 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; 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
(aka ‘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. 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; I will say “Thank
you!” And we can leave it there, compliment given and compliment received.
