I am a shitty healthcare consumer

BE AFRAID! BE VERY AFRAID!
BE AFRAID! BE VERY AFRAID!

Thinking about finding new doctors — a PCP and a neuropsychologist — I am dreading one thing in particular:

The expectation that I’ll be a “good consumer of healthcare services”.

Augh! Nothing sends me over the edge like that “consumer” label, when it comes to healthcare — especially brain injury recovery. It makes me NUTS.

Here’s why:

The label “client” boils us down to a set of behaviors or “consumer choices”, rather than living, breathing, vulnerable human beings in need of assistance in both subtle and obvious ways.

The label “provider” makes the doctor/neuropsych seem like an impersonal automaton who’s just going through the motions of providing a thing — like a vending machine delivering the bag of chips from the cubby you chose, or a fast food employee asking if you want fries with your order.

The client/provider terminology reduces the whole relationship to a series of transactions, which is really what they are in insurance company terms. And that sucks all the life and humanity out of it. Instead of being living, breathing people who show up in need of assistance, we’re male/female objects of study who are assigned whatever coded solution the provider deems necessary.

Calling us “clients” also completely misses the fundamental hallmark(s) of brain injury in a number of ways. As a reader commented on a recent post, we don’t have the choice about whether or not we need treatment. It’s not like you wake up one day and realize your shoe has a hole in the bottom, so you go out to your favorite store and pick up a new pair… or you think a certain outfit makes you look fat, so drive to the mall to find more flattering clothes.

With a brain injury, you may not even realize that you suddenly have needs — or if you do realize that, you may not understand what it all means — or you may not have the capacity to reach out and find help — or you may not have the means to get the help you find.

Using the client paradigm for brain injury survivors is wrong — and stupid — in so many ways. It’s also cruel and perpetuates suffering in countless ways that directly violate the Hippocratic Oath that every doctor must swear to. They actually promise “I will utterly reject harm and mischief” — but the client concept just perpetuates harm and mischief without end. Okay, so mental healthcare people, including neuropsychologists, don’t have to swear to the oath, but even so — wouldn’t it make sense to at least have an interest in rejecting harm and mischief?

From the comment:

I can still hear the founder of the National Head Injury Foundation (NHIF) (whose daughter has a brain injury) when a group of advocates with brain injuries were discussing how demeaning and offensive the word “client” was at NHIF annual meeting in 1988. She was defending her position by giving us examples of her being a client of hair dresser and her insurance agent. She said she had the ability to go to another hair dresser or insurance agent if she didn’t like how she was being treated. “I’m a client of theirs, but I have the power because I can go to someone else with my business”.

Hahahahahahaha… Sigh.

“Client choice” implies the capacity to A) identify what you need, B) see that you are/are not getting your needs met, C) go somewhere else.

A) You have a brain injury (hello!) – how the hell are you supposed to be able to identify what you need? You are often blind to your own deficits AND you can come up with all sorts of imagined deficits which aren’t actually there.

B) Your brain injury can prevent you from determining whether or not your needs are being met, because of damage to assessment and decision-making functions in the brain. Even the most poorly educated brain injury professional would know that. It comes with the territory. If you can’t determine what your needs really are, how in heaven’s name are you supposed to tell if those needs are being met. As an aside, I was convinced for years that my neuropsych, while helpful in many ways, wasn’t really helping me with my main problems. But guess what? They were. I just didn’t realize it for, oh, about five years. That’s way longer than most people have access to, or continue with, brain injury rehab.

C) Thanks to the Swissy-cheesy medical system, with is chock full of hacks, under-educated docs, aggressive/defensive insurance companies, and hurdles that are well nigh impossible for completely functional people to navigate, the chances of us being able to shop around for better help are slim to none. In rural areas (as in, most of the USA), you take your life in your hands, when you choose a doctor. Even in urban areas, it’s hit and miss. I’m going through this right now, with replacing my two docs — I feel like I really got lucky finding the two I’m losing. How am I supposed to repeat that luck? I have maybe two good thinking/functioning hours a day, thanks to fatigue and overwhelm, and no offices are open at the time when I’m at my best. The rest of the day, when I’m working and living my life, my bandwidth is severely limited (though I do a great impression of a functional average person). I simply don’t have the leisure of scouting around and going through an extensive screening process. And even if I did, I have no confidence that I’d be able to find reliable help in a timely manner — or that I’d even choose well.

Even after 10 years of recovery and being more functional that I’ve ever been, I feel like I’m basically screwed. After all this time, and with all my new tools, I still have no faith in 1) myself and my abilities to successfully navigate a complex and hostile system, or 2) the medical establishment which protects sub-par doctors under a veil of professional courtesy and allows terrible (and dangerous) doctors to “practice” medicine on patients who basically amount to science experiments.

I am the epitome of a terrible healthcare consumer. I’m an awful client. I question doctors’ authority. I challenge their ignorance. I bring pen and paper with me to write things down, and I type up my issues to give to them, when I arrive. I research my own conditions, I get to know my own “ecosystem”. I don’t sit back and let the doctors do all the driving. And I’m non-compliant, because some of the things they tell me are lazy… or uninformed… or overtly hostile… or deny my right to personal autonomy.

I don’t believe in roles-based medicine. I don’t believe in much roles-based anything. People who have to fall back on some template of behavior are instantly suspect to me, and people who spout jargon without even thinking about what it means, are on my shitlist. If you have to have your behavior defined by someone else, I’m not interested in working with you, because you are dangerous.

Of course, I will if I have to. I may have no choice, because contrary to the idea of us being “clients”, the selection of decent doctors who have a clue about my condition is sparse, scant, and the majority of them are booked up. Or they don’t take my insurance. I’ve had to make do with shitty doctors for years, and the prospect of having to go back to that again, doesn’t brighten my day. It’s almost like the whole system is designed to fail us.

Seriously, it’s like the insurance companies and the medical establishment want us all to just die off — after they’ve collected our premiums, of course. It’s much cheaper for us to die. And a lot less trouble for them.

Treating brain injury survivors as clients or consumers of a medical product system is a great way to ensure that the people who wish us ill, actually get their wish. It’s also is a very stupid way to look at things, and no right-minded individual who actually understands — or genuinely cares about — the impact of brain injury on person’s ability to assess, evaluate, and choose, is going to adopt or repeat that nonsense.

The problem is, it keeps happening.

Oh, screw it. I’m going for a long walk in the woods.

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Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.

Onward.

 

 

Oh, look – there’s hope after all…

Great info over at The Rogue Tomato about The Bravewell Collaborative and their recent Summit on Integrative Medicine.

I’m just now finding this, myself, so I don’t have a lot to say about it. But it looks quite promising — especially since the Summit involved some very established physicians from some very established institutions.

If they’re paying attention to this, then my day just started looking a little brighter.

Which just goes to show, it’s never a good idea for me to completely lose hope. I don’t know nearly enough to despair responsibly 😉