Friday, June 03, 2011

I'm Healthy/No I’m Not

   
My Writing Buddy has done it again. The woman keeps making me think and I intend to speak sternly to her about it one of these days.

Laurie's latest post In Translation is about coming back to the oncology centre for a monthly treatment and being asked how she feels in this question in particular poked at something I've been gnawing at for a while:

“Nurse:
"You're depressed. Why?"
Me: "I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.")”

When I get my Humira shot, I have to go to my doctor's office for it. The Biologics come in two forms: infusions that you get via IV in a clinic or self-injectable that you keep in your fridge and do yourself in your home. However, due to the RA-related damage and deformities in my hands, I don't have the dexterity to stab myself, so every 10 days or so, off I go to my doctor's office. I'm there a lot. I chat with the nurses and reception staff and my appointments with my doctor are very rarely about medical issues; instead, she tells me goofy jokes while doing the injection. It's all very relaxed and friendly.

Except. I've noticed that it messes with my head. I've noticed that in this context, I'm more likely to respond honestly when asked how I am. A have both RA and fibromyalgia and am on a load of medications with interesting side effects, so there's always something going on. The kind of somethings that I skip over in casual conversation, because they're just the background noise of my life, but when my doctor asks, I might bitch. Because this is a doctor’s office and when you go to a doctor’s office, there's usually something wrong with you, right?

I once told a friend that it was so nice being healthy again and in her surprise, the filter slipped and she blurted "but you're not!" I argued that my RA was suppressed, that my blood tests showed thisclose to normal, that I was eating like a horse and getting stronger every day, so yeah, healthy. She couldn't get there, hitting her head against my RA as some sort of impediment to attaining the status of Healthy, whereas I insisted that I prefer to look at my life in a completely different way. A non-sick way. For the first time in as long as I can remember.

Except. By definition, I am sick. I have a chronic illness, nevermind that it is currently dealt with by medication (watch me neatly sidestep saying the R-word). On the other hand, by definition – the R-word, objective blood tests, level of independence, ability to work (albeit far from full-time) and live my life - I am not sick. But I still traipse into my doctor's office several times a month and Laurie, despite being in the same sort of situation, still traipse into the oncology center once a month and we have both done this for years.

I've been known to argue about the term Patient. Usually connected to my job title and function which in the industry is called Patient Expert, but also in my own life. I resist using the terms RA sufferer or RA patient - for me, being a patient is related only to the moments where I am actively receiving medical care, not the rest of my life. Because my life is about my life, not about being sick and if I don't have that level of compartmentalization, the patient, the sick seeps in and covers everything in a thick goop that makes everything feel awful. For me, the focus has to be on my life and all the other things I am first and foremost and I work hard on it everyday..

But how do you manage that separation that when there's this many medical professionals this often in your life? How do you do stay within the headspace of healthy when the aftereffects of the treatment that keeps you going often makes you feel sick for a couple of days or a week? How do you maintain the image of yourself as healthy - or even Healthy - when you spend so much time in a context that is described and defined as Sick? Maybe we need another word. Maybe what we are is Not-Sick.

Except. Why don't we get the Healthy? Why should we need another word, another category? Why can't we expand the idea of healthy to include healthy-by-medication-despite-the crap-side-effects? There are more of us than anyone realizes and relying solely on the narrow niche defined by the normies does no one any favors.

A healthy life is not just for the ridiculous able-bodied. It's for all of us. 


I recently got an email from NursingDegree.net telling me I'd been included in their list of 40 Excellent Blogs for Arthritis Support. I am thrilled to bits. Thanks, ND!

   

1 comment:

Catalina Silva said...

There is a new definition of health trying to make its way in the medical community: “the ability to adapt and self manage” in the face of diverse life's difficulties.
I hear what you say, and I like the idea of us chronic patients realizing we can feel healthy too. Not our entire life is sick, and not all of our time is sick time.