When I write for HealthCentral, I am called an Expert. I like the title - who wouldn't? It's nice being an expert, especially if it's with a capital E. It appeals to my latent megalomania and that's never a bad thing. Well, some people might think I'm enough of a know-it-all already, but they clearly just haven't seen the light yet.
Anyway! Here's the thing. Expert is the short form of Patient Expert and that's where I start twitching. It's a word that's bantered about quite a lot in places that employ people with various diseases and conditions to serve as representatives for other people with the same disease or condition. I'm not just picking on the people who employ me, it's other companies like it and it's pharmaceutical companies who are increasingly making sure they include the end user to provide feedback, input and be spokespeople for different types of medication. I'm not sure how I feel about that, but should Abbott Laboratories offer me an indecent amount of money to sing the praises of Humira, I might consider it. Depending on how indecent the money was.
No, probably not, but I do have these bills that need to be paid.
I should get to the point, you say? The point is that language matters, names matters and labels matter and labeling myself as a patient - or rather, Patient - is very much not who I am. A patient is someone who is sick and although it could be argued that I do have a chronic illness, I do not consider myself sick. Having a big flare can make me sick temporarily, but when the meds are working - and sometimes even when they're not so much kicking my RA’s arse - I am not a sick person. Using the label patient reduces you to only your illness and defines you solely on someone in receipt of medical care. And sure, I have a doctor or two in the context of my appointments with them, I may consider myself a patient, but as I sit here in front of my computer writing this post, I most definitely am not I'm also not a patient when I hang out with the Tinks, spend time with The Boy, work for MyRACentral, take photographs or play with the cat.
What does it do to you head if you identify yourself as always being a patient, as always being sick? How can you set about having a relatively normal life if your illness is front and center at all times? This is also why you will never see me use a term "RA sufferer." Because of what it does to your head to identify yourself as a sufferer of anything. I have an illness, but it isn't the totality of me, merely part of what I am. Who I am is someone else entirely and what I am is only occasionally related to my RA.
As those of us who live with miscellaneous medical crap are becoming increasing empowered, more questions are being asked about what we should call ourselves. Healthcare consumer is a good one but a bit of a mouthful and I quite like client because of its connotations to someone paying for a service instead of meekly receiving medical care from the almighty doctors. Not to mention that it might encourage more customer service being insisted upon and therefore included in medical care. Still, I don't have as many quibbles with the word patient in the context of when I am in front of my doctor, but when I am at work? I may be an expert in living with RA, I may be an expert in navigating the healthcare system and I may know quite a bit about the ins and outs of the disease and in helping people who are new to it, but that makes me an advocate, an activist or even every now and again an Expert, but reducing what I know, who I am and what I do to patient misses the mark completely.
It reminds me of attendant care, in which people are paid to help you with activities of daily living - it is non-medical, solely related to things like cooking, showering, dressing, cleaning your house, etc. The deinstitutionalization of the 1970s started the shift in the power dynamics between people with disabilities and those who provide care for them. When the independent living movement got going, they rejected the medical model and its insistence on calling us patients, ditching that term in favor of the word consumer. It shifts us from being passive recipients of care to being active consumers of a service, thereby placing the locus of control where it ought to be. Becoming a consumer is a rejection of the paternalistic approach in which so-called experts (doctors, nurses, etc.) decide what happens to you - because us cripples are incapable of making such decisions for ourselves, y’know - and ensuring that you are in charge of your own life, just like other people.
So. Much as it sounds weird to advocate moving away from the medical model when you're discussing your role in the medical system, considering the theory behind what's going on creates a number of questions. Does the term Patient Expert imply a paternalistic granting of special status by the medical profession, pharmaceutical companies, etc.? Does it convey a privilege instead of right? Is it the term we who fill these roles would have chosen for ourselves? I sort of doubt it - I believe the role was created by the healthy, the able-bodied, the people who are designated to "help" us without input from the population they are trying to empower. Should they - the mysterious They - even be in charge of empowering us or should we take the reins of that process firmly in our own hands, start a dialogue between ourselves and then get back to Them when we've decided what this puppy is going to look like?
I think you know my vote.