Monday, May 15, 2017

My Inside Job

I truly dread meeting new people. Small talk and idle chit-chat usually lead to being asked anxiety producing questions like “So, what do you do? Where do you work? Are you working full-time?” Where is a trap door when you need one?!

I never ask anyone these questions because I don’t want anyone to ask me these questions, because I don’t have an answer, well a good one anyway. Since I was 15 years old, I’ve always had at least one job. I haven’t had steady work for about six years now and I really don’t like to talk about it all that much. As a person living with chronic illness (that sometimes needs a two hour nap after a trip to the grocery store) I just don’t have the stamina, for a job or the conversation.

When I meet someone new that asks me about my work, I usually say something like, “I’m between gigs right now.” If they press for details, I start stammering a long and turbulent story of my work history (AKA: my resume) in a desperate attempt to let them know that there is nothing wrong with me, I am employable.  I usually leave my medical resume out of my ramblings. I’m not sure, but I bet there is probably some Emily Post rule out there somewhere about the timing of introducing the topics of brain surgery and bowel habits into a conversation with someone you’ve just met.

It’s when we part ways that I beat myself up, wonder why I said all the dumb things I said. I get caught up in comparing myself to others, thinking that I’m not good enough or worthy of their time because I am not gainfully employed. I find myself projecting what they may be thinking, are they judging me because I do not have an employer? Do they think I’m lazy? If only I tried harder? Am I too picky? I berate myself for not having a job; if I had a job, I’d have an acceptable answer. Over-thinking: 1 Kelly: 0

I’ve tried making my employment status into a joke by giving clever yet evasive replies. After a few chuckles from the crowd, I somehow end up apologizing for being flip and go back to my old spluttering script. Here are a few of the responses I have tried:

·         Self-unemployed –One time someone responded, “Oh, an entrepreneur, how exciting!” I’m not sure if they missed my joke or if they were playing along and I missed their joke.
·         Domestic Goddess -stole this one from Roseanne Barr. Usually makes people laugh but I think most don’t know of its origin, I’ve actually had to explain who she is and it kind of takes the fun out of it.
·         Alchemist-I can take ordinary water and make the most fabulous soup you have ever tasted. And at Thanksgiving, give me the picked over turkey carcass and I can feed you for days. Actually, I’m very much like Jesus; water to wine, loaves and fishes? Please!
·         Professional patient -While true, it does catch people off guard, makes them uncomfortable and head for the hills. Essentially it gets me the result that I claim I want; to be left alone.

Seriously though, after some much needed self-reflection, I’ve come to realize that yes, I indeedily-do have a job, it’s called, Taking Care of Myself. What I don’t have is a paycheck.

The other day, I decided to test this new response out. I was attending a conference and someone asked me one of the million dollar questions, “Do you work full-time?” I calmly answered, “Yes, I work full-time at Taking Care of Myself and waited for her reaction. She didn’t ask for details so I offered none (I thought my head was going to explode!) She just smiled at me and said, “Good for you!” Over-thinking: 0 Kelly: 1

Monday, May 1, 2017

Membership to the ‘You Don’t Look Sick’ Club: A Doubled Edged Sword

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.