Thursday, February 17, 2011

Identity Crisis

   
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.
   

9 comments:

Adrienne said...

See, to me, Patient Expert sounds fine, b/c I don't have any negative connotations with the word Patient as meaning someone subservient or subject to paternalistic patronizing attitudes.  I just think of someone who's receiving treatment for XYZ who is also an expert on the subject.

OTOH, the word "consumer" has negative connotations to me.  I have a good friend who's a social worker and is constantly talking about the consumers she works with.  It makes me think of consumer *ism* which to me is a bad thing and completely out of control in our society.  Probably doesn't help that part of my friend's job is to take the consumers shopping, so she's actually helping the consumers consume.

I dunno what the right answer is... and honestly I don't think most people think so hard about the semantics of it. Although maybe they should.

Colleen Humphreys said...

I think it means you are an expert at being a patient...which *to me* sounds like a choice.   You choose to be a patient when you choose to go to the doctor to get advice/treatment/whatever.   Just like I choose to be a shopper when I go to the grocery store.   But I am *very much* not a store shopper ;)    Since you have researched and practiced being a patient, you are an expert one.   My SIL was an expert caregiver, when her husband had a MUDD bone marrow transplant...she battled the insurance company and won.  She isn't a caregiver for someone undergoing bone marrow, anymore, because he had it, survived, got well, got off the steriods, and is now the healthiest guy I know (10.5 years post transplant!).  But, at the time, being an expert caregiver was almost the most important job in her life.


Those who have cronic illnesses sort of have a choice, being a patient or a Patient.   A patient is passive, sick, not really involved in their own care and choices, while a Patient is a consumer of medical services, maker of decisions and manager of their own care, with assistence from professionals.   It is usually one of many titles, like Quilter, Knitter, Mother, Programmer, you name it...one may not be active in that aspect of one's life all the time, but it's always part of you, once you take it one, since it involves knowledge and skills, and you typically find yourself using skills from one aspect of life in others!

But, as usual, it's not the term used that matters, it's the attitude of those using the term that does.

I learned this in college, when a rough speaking, tough, odd friend came over to worry with me about a sick guinea pig, and he said, "ah, she croaked", when we realized she was dead.   And I was comforted, because the *way* he said it, his demeaner, attitude, expression, etc, were all totally sweet and caring....the words though?  <shudder>   But from him, they were fine.

So, from you Patient Expert is a title with honor, not *who* you are, but a responsible, sensible, useful part of you (as it would be from many fabulous Doctors I've known).   From some doctors I've met (lower case to show disrespect), the term would be a total insult.</shudder>

Jocelyn said...

Your thoughts about the way that titles change people's perception of the title-bearer really connect with me as a linguist.  There was an interesting study done a few years ago (http://pss.sagepub.com/content/10/6/489.refs) which showed exactly that - that when someone was referred to by a lexicalized label, children thought of the traits associated with that label as being more stable and long-term (e.g. more definitional of who that person is, rather than simply being one of many traits associated with that person).  Names really do matter.  People make assumptions about other people's capacities (among many other things) based on categorization and on the traits associated with a particular category.

That said, it is often difficult (group-internally) to decide on the best way to refer to people who see themselves as members of a group.  I work with Native Californian tribes, and the folks I work with variously (and passionately) refer to themselves as Native Californians, Natives, Indians, American Indians, and Native Americans.  Each of them has the individual right to choose what they should be called, and the group has the aggregate right as well (more fraught in practice than in principle, of course); that doesn't mean that everyone agrees, or thinks that they should agree.  And it all changes over time as each new name accumulates associations with which a new generation doesn't want to be associated.  Fascinating stuff...

Diana said...

Great questions.
And things I need to think about.
Recently I began a new health regimine including daily exercise with my arm bicycle.
It makes me feel more powerful to have my blood pressure in my own hands rather than dependent on drugs (I know how lucky I am to have caught blood pressure spikes early enough to have that choice). I also need to become a client of attendant care at some point in the future. Right now I can only get truly clean a few times a week with the help of my husband, but I am not considered to be deserving of care as far as the insurance company.
Yeah. Burns my knickers too.

k said...

I like the way nobody mentioned patient as meaning somebody who waits calmly...
Your superhero badge there is Patient Expert. Your superhero badge here is Fairy Princess Photographer Who Shows Us Tinks.
You know who you are. Don't let the bastards get to you.

Carl said...

A very thought provoking post!

AlisonH said...

I've been walking through that argument for 22 years, and I still don't know. But I love how well you thought it out loud for the rest of us. Words create meaning, and meaning is the language of the soul.

Gaina said...

Oh hear ya!

 It's not so much the label that I have a problem with as that fact your not allowed to have several at once and let them ALL be you. 

Some able-bodied people have a really hard time getting their head round the fact that you're not 'sick' but some days you have no spoons and others you have lots....but that doesn't mean they couldn't run out at any moment and that's why you need to take care of yourself and organize your life slightly differently to the way they do. 

This for a lot people results in hiding our 'weaknesses' to the point where we make ourselves sick or being honest about the bad days and being catagorised in a way that means you don't get opportunities to do things you can handle if given the assistnace to do them in your own way.  It seems to be a case of do it the able-bodied way that they can understand or be literally INVALIDated.

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