What do you do about the doctor?

One of the hard parts about having a chronic illness is that some doctors are just going to fail you.  And some of them are going to fail you badly, in ways that are really harmful.

I can’t remember if I’ve already mentioned this before, but the first geneticist who I saw was an absolute prick, and beyond useless.  He told me I had “familial joint instability” and not Ehlers-Danlos Syndrome.  I saw him because he was local, in-network for my insurance, and his office claimed he was experienced with EDS.  He talked over me when I tried to ask him questions, like why he wasn’t considering my symptoms other than joint instability in making his diagnosis.  He made me feel disregarded, and above all like the most important thing for him was scrambling off to his meeting he was late to.  Hey, he’s the one who scheduled patients for that date and time.  It’s just not right to do that when you don’t have the time to actually deal with them and talk to them about the ramifications of the diagnosis (or non-diagnosis) you’re giving them.

My GP at the time didn’t believe I had EDS.  I only got the referrals to geneticists because I insisted on them and the rheumatologist said it might be possible that I had EDS.  She had misremembered things, and thought that the physical appearance that is a give-away for Vascular type (but NOT present in all people with Vascular type) was present in all people with EDS.  Things like narrow lips, a thin nose, and protruding eyes, none of which I have.  I have fairly full lips for a white woman, a button nose, and eyes that are neither protruding nor sunken.  I fought her to get the geneticist’s referrals.

After that really awful appointment, I was torn between wanting to cancel with the second (world-renowned) geneticist as a waste of time and being certain I needed to see her because she ‘got’ EDS and that first guy didn’t.  I’m glad I went with the second line of thought; online communities of people with EDS gave me the confidence to go through with it, even though it was going to end up costing me about $700, when you included the travel and the high price of an appointment.  She was amazing and kind and thorough, and checked all kinds of things I didn’t know were relevant, and gave me written recommendations for things my doctors at home could do to help.

The contrast between the two geneticists couldn’t be bigger, and it made me so frustrated to look back on that first appointment.  The chill, the lack of empathy, the lack of time for me, the inability to answer questions…it was just horrid.  It was, at that point, the worst experience I’d ever had with a doctor.  I couldn’t believe how unhelpful he was.  Being able to compare him to the good geneticist just made it all the clearer how awful he was.  I had to talk to my fiance to get verification that he really was as bad as I remembered, because I thought that perhaps my feelings had clouded the way he actually treated me, but my fiance agreed that my version of events was right.

So what do you do about doctors like that?  I mean, of course you avoid them.  Maybe you even write them negative reviews (I left him a pretty scathing one on every doctor rating site I could easily find!).  I thought about writing his hospital about how awful he was; I think maybe I should have, especially the scheduling issue.  Because it’s just not ethical to book someone in for an appointment, have them wait months and pay for it, only to give them insufficient time to actually talk to you about what the diagnosis means and what they should do about it.

Yes, you hope to find the good doctors.  At this point, the geneticist I saw who was so wonderful has a 2 year long waiting list, because she’s so good.  That’s a problem in itself.  And I know I am quite privileged to be in a position where I could A) push my GP into giving me the referrals I wanted, B) get a second opinion, and C) travel to a renowned specialist in my condition.  But even from a place of such privilege, it’s hard to go through.  I can only imagine how much harder it is for someone who isn’t a ‘good’ patient like me*, or who doesn’t have the health insurance or financial resources I have had access to.

*When I say ‘good’ patient, I mean the sort of patient that is perceived to be a good patient by medical professionals.  Young, white, cis, female, well-spoken, middle-class, generally able to be medically compliant and have always had access to medical care, no tattoos, natural hair color, only basic earlobe piercings, no addiction issues, in a steady long-term relationship, etc.  I know my force of personality has also helped me get the care I need, though in some cases it has taken far too long (my autoimmune issues probably should have been diagnosed years before they were, but that’s a post for another day).  I think it’s really problematic that so many of these things that are beyond the patient’s control affect whether a patient is seen as a ‘good’ patient and from there what quality of care they get.  I do have a few things that keep me from being an ideal patient – I’m fat, I don’t exercise ‘enough’ (though I do emphasize that I do as much as I feel I can), I’m disabled, many of my symptoms aren’t quantifiable from the outside, I take a number of daily meds including opioids, so on.  I’m not a perfect patient, but I think my demeanor and ability to advocate for myself usually is sufficient, combined with my ‘good patient’ points, to get me a high standard of medical care.  Other than fighting to see the geneticist, I’ve never been refused any referrals I ask for, and no one has suggested to me that my conditions are ‘all in my head’, even though many of them are hard or impossible for an observer to see.  I’ve also usually gotten the treatments I have decided were necessary.  I’ve rarely had my complaints brushed off.

…sheesh, I think maybe I need to write a post about the ‘good’ patient and how that’s a problem.  Probably talk about privilege a bit too, because medical care is one of the sneakier ways that privilege shows up.  I’ll put that on the to-do list.

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One-size-fits-all doesn’t fit.

I’ll preface this by saying this: I know I’ve got a rare, frequently misunderstood, generally unknown condition. My own GP, who is in general a smart woman, thought I couldn’t have it because I didn’t have ‘the look’ (there’s a frequently seen appearance with Vascular type, but even then it isn’t universal, and it doesn’t apply to any other types). It doesn’t mean much to most people, so much so that whenever I go to a new doctor, I bring a packet of articles and information about how EDS works so that they know what they’re dealing with. (I’m sure you can imagine, as there is connective tissue in every part of the body, I’ve seen a lot of new doctors since this became a suspicion a year ago)

This post isn’t about doctors, though, it’s about one-size-fits-all approaches.

Look, they don’t work. It’s like those ‘one size fits most’ pieces of clothing – sure, they fit ‘average’ sizes, but someone skinny or heavy just won’t fit into them. Even the ‘average’ sizes aren’t fitted well.

To give you a great example: trying to order a piece of equipment my occupational therapist, my sleep doctor, and I decided I needed.

So the item in question is a low pressure mattress, aka a low resistance or low resist mattress. In a queen size no less, because I need to be able to sprawl when I don’t feel well to take even more pressure off the joints, and because I have flailing screaming… things… that are probably night terrors, though I don’t have an official diagnosis as I did not have one of these during the sleep study. If I’m on a small bed and one of those hits, I will invariably hurt myself. A larger bed presents lower risks to everyone but the boyfriend, who will invariably get clobbered. (The trouble with being a heavy sleeper with a girlfriend who has night terrors.)

When I called them, they said yes, they would order it for me.

When I arrived to actually give them the prescription and get the order started, they said ‘Oh! We can’t order that for you, you’re so young. You don’t have pressure sores or ulcers, do you?’

I said ‘No, I have a connective tissue disorder. I dislocate joints in my sleep. I need a low resist mattress to make this happen less.’

They said, ‘You just need a pad to go on top of your mattress.’

Now, if that was all I needed, why on earth do you think my doctor would’ve written a prescription for this? I understand that this isn’t the ‘typical’ reason for needing one of these. I also know that a pad won’t work – I’ve already got two on top of my mattress, and all that does is make it so that more often than not, I can sleep. It doesn’t stop me from dislocating my shoulder or subluxing my hip, not to mention what I do to my hands and wrists.

After several minutes of arguing with them, and with their superior, they finally said they would take down my information and start the process, with actually calling companies and finding out if my insurance will cover this without a fight happening on Monday.

I’m fairly sure I’ll have to fight my insurance on this. Won’t be the first time. Any time I need an item that is not 100% traditional, I have to fight them. My knee braces? Covered. Inserts for my shoes to keep me from spraining my ankles? No way. Massive, custom made braces to keep me from spraining my ankles? Covered. My crutches took weeks of fighting to get covered, not the least of which was with the medical equipment company! I can’t get 2 series of physical therapy for similar injuries to the same body part, but I’ve had more MRIs and CT scans in the past year and a half than the average person has in their entire life.

So here we are – a not uncommon piece of medical equipment that I’m told I don’t need because people can only imagine it being used for one thing. Great.

One of the most frustrating things to deal with, as a person with an unusual sort of disability, is the fact that most people can’t get why I want or need what I do.

There was a bit of a to-do when I moved into my school-owned graduate housing apartment, because the carpeting had not been laid yet. They suggested putting my furniture somewhere in storage for a few days and then moving it in, even though I came on my approved move in date. Oh no, no, no. I cannot ask people for help too often or I burn them out, I am NOT making all of my moving assistants come out another day, you need to make this work. (in the end, they moved the furniture as they put the carpet in)

I’ve been told that as I do not have wheels, I do not need an elevator. Um, hi…joint problems + stairs = recipe for dangerous accidents. Especially if they’re crowded stairs.

I’ve been told that as my paperwork wasn’t filed right, they didn’t need to give me a first floor apartment.

I’ve had people get mad at me because I have a key to the accessible back door of my main building at school, but occasionally come in the front entrance (which has stairs). Sometimes avoiding walking the extra distance to the accessible door at the back of the building is more important than not walking up stairs.

I can get all kinds of accomodations for school, including things like note takers and increased time for exams. But a reduced schedule? Oh no, I’ve got to be able to get through the same number of units as any part time student, and my allowed graduation date is the same, with no extention to it.

I’ve had a doctor insist that the exercises I told him were beyond my capability were completely appropriate and harmless. Because he was a tremendously insistant ass, I did them. After all, he’s the one with an MD and there’s a chance I was wrong. I only partially dislocated 2 joints, not that I’m doing the exercises to STOP problems like that or that each time that happens causes more damage.

The reason we don’t custom-make many things anymore is because it takes less labor to do it this way. In short, non-custom is cheaper. We live in a society where the bottom line is the big concern. (Just look at the phrase ‘the bottom line’ – we use it to mean ‘the important point’!) In a society where the bottom line is the highest priority, we can’t take the time to actually do things in a way that values the individual or the differences between individuals. This impact this has on your life gets heavier the farther from the ‘norm’ you are.

When you’re fat, it’s harder to find attractive clothing and it’s generally more expensive. (I don’t consider fat a pejorative, just the most efficient way to describe size. Please see http://www.kateharding.net, http://www.therotund.com, and/or http://www.fatshionista.com)

When you’re disabled, it’s harder to get basic necessary access and services. The more unusual the disability, the worse this becomes in some ways.

When you’re not walking (wheelchair or mobility scooter), it’s harder to do even basic things like shop – places are not designed for non-standing folks and people are damn rude.

When you’re not neurotypical, it’s harder to get people to listen and understand, and to get people to make themselves understood to you.

When your neuro-chemicals aren’t balanced, it’s harder to get people to not dismiss what you’re saying as your mental illness speaking.

When your experience is not ‘the norm’, it’s harder to get validation and the treatment a person who is valued recieves. I’m sure many of you can add on to that list of ‘when you’re not…’ and please DO! I want to be able to add YOUR experience to my view of how we are failed by the one-size-fits-all approach.

Part of the beauty of humanity is the varience: the fact that we aren’t all one size, one color, one height, one weight, one shape, one ethnicity, one religion, one set of abilities, one opinion, one set of tastes, one style, one outlook. To really see our value as people, we have to value other people, whether or not they are the same as we are in any of these categories. It is our diversity that makes us amazing.

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