Okay that sucked

[ysobel]

Had a video chat with my primary care doc.

In her perception of the world:

* doctors always look for signs of autism and adhd in children
* it is rare if not impossible for anyone to get through school without all appropriate diagnoses
* this includes dyslexia (oh my god the skepticism in her voice when she was telling me about another patient of hers that ~thinks she has dyslexia~ despite having gotten ~all the way to grad school~)
* adhd meds are stimulants and work the same way on all brains so giving adhd meds to an adhd person will cause more problems than it's worth
* because I am not in school and do not work, there is absolutely zero reason to pursue a diagnosis
* (when I pointed out that it's not just a matter of "I can't do things I need to do" but "I can't even do things I WANT to do" she said that it would be ridiculous to put me on meth so I can watch a movie)
* adults with adhd don't take meds anyway, except maybe as-needed if they're in an exceptionally stimulating environment
* I am only having these problems because of increasing physical limitations and also anxiety (even though I've said several times that the behaviors and thought patterns go back to childhood, pre-dating even the existence of my depression)
* my existing diagnoses (FOP and anxiety) are all I need to get adequate support (ahahahahahaha)

I just ... ::flails incoherently::

Oh, and she was baffled by the hostility (actually desperation) in my responses because her telling me all this was just her, like, explaining the roadblocks I might face, and she's just the messenger. Even though none of it was phrased as "you might get resistance because xyz", it was all "xyz is absolute fact and also your needs don't matter because you don't work"

She's usually really good about stuff. Just ... not this.

Comments

[arctowardthesun]

That sucks, I'm sorry. <3

Gatekeepy docs are the worst.

eta: also ahahahahaahahaha doctors looking for that shit in AFAB kids.........

[ysobel]

Especially AFAB kids who were "gifted" and therefore could compensate for academic slip-ups.

And I was an obsessive rule follower so had even more flying under the radar, because I needed to do what was expected even if it was hideously boring. My sister is more adhd than I am -- she "didn't bother" doing the work and she got school library privileges revoked because she was reading in class rather than paying attention -- and she didn't get tagged as adhd until adulthood.

I think my doctor is just extremely clueless about adhd. But it feels kind of like fighting a brick wall because I told her several times that I didn't get screened as a kid because they were looking for hyperactive boys, I told her that adult dx was something that happened especially with women and/or inattentive adhd, and still she kept going back to the "but it's diagnosed in schools!" thing.

To, you know, ~prepare~ me for the roadblocks I might encounter.

I didn't bother explaining that there are (anecdotally, anyway) people with adhd who get initially diagnosed with just depression and anxiety. Or that adhd meds work differently in adhd brains. Because just ... I couldn't.

I was crying, on the video call, trying to express how important this was to me, how I just fucking want my brain to work. (The way my therapist explained it, among other things adhd meds can kind of bridge the gap between thinking and doing, so that things actually get done.) This was "hostility". And she said "I feel like you've been told ... something ... that makes you think a diagnosis will fix things".

...yeah, I've been told that *I'm not actually crazy or a failure* and that adhd meds might help my brain function so I can actually ... function. Weird concept.

Argh.

But also 💜

[conuly]

still she kept going back to the "but it's diagnosed in schools!" thing.

If the parents request an evaluation and also the student is sufficiently impaired to be below grade level, then yes.

[prissi]

seriously lolz no.

ADD/ADHD is not diagnosed in schools, ever. that's a medical diagnosis. they may say things like they suspect ADD/ADHD and tell you to go get your child evaluated by a doctor. but the school psychologist can't manage/prescribe the meds, so... just no.
and then of course it really baffles me because then sometimes the school districts will fight me on things like an autism diagnosis, which is ... also a medical diagnosis.
then there are the schools that apparently send kids to me to get a psychoeducational evaluation for dyslexia or a learning disability and I'm just like... umm, that's your job, I can't do that evaluation...

the school evaluations have to be requested by the parent, yes. but getting them to actually do them can be a painful process. and then even the psychoeducational testing they can do is very limited -- limited resources, limited time, and sometimes the test(s) that's picked may not show the deficits the child has. actual psychoedcuational evaluation takes days and days and days, spread out over weeks, is exhaustive, and is not cheap.

[conuly]

but the school psychologist can't manage/prescribe the meds, so... just no.

Yeah, and btw, the schools would (on the whole) love for you to do nothing but meds rather than any additional accommodation that the student might require. No taking away recess? A hard limit on how much time the student is allowed to spend on homework nightly, with no penalty for incomplete work? Gasp, shock, horror.

[ysobel]

Yeahhhhh, even if they'd been looking at anything other than hyperactive boys, I wouldn't have gotten snagged. My parents didn't know to request evaluation, and I was smart enough that I could compensate for the various flubs (like the time in 8th grade history when I missed the deadline for a long term project because it was just written on the board (among probably a shitton of irrelevant stuff) and never announced, and when I begged him to let me turn it in a day late because I hadn't been aware and had it at home, he docked me to 69, of which 1 was actual error in work and the other 30 was being late; but my overall work was good enough that I had an A in the class) and so I would have been overlooked.

I also think my obsession with following rules masked some of the add stuff, because my sister kept getting in trouble for not doing work (and really was way more overtly add than I was, just inattentive variant, and she didn't get dx until adulthood either) but I was too Good to not follow orders, so I just procrastinated and then did shit at the last minute.

Schoolwise I was in the Gifted & Talented channel, and of course "gifted" kids can't have adhd right, lolsob. So yeah, her insistence that it would have been caught just kind of baffles me. In an ideal world, sure. But this is far from ideal...

[pauamma]

/me scowls at your doc.

[ysobel]

💜

The good news is I do have a neuro appointment to try to continue the process. The bad news is a) I have no way of checking whether they know about adhd in women, so I might face more of this sort of thing, and b) even if they go "yes you have adhd" if would just get bounced back to my primary to actually do something about, and I'd have to metaphorically armwrestle her to actually ... do something.

But.

Yeah.

And I'm still baffled at the way she talked about the grad school patient with dyslexia. Like it was impossible tor a dyslexic to do well in school without "getting caught". Wtf.

[alexseanchai]

that is impressively shittastic

[rydra_wong]

*primal screaming*

I'm so glad you have a neuro appointment regardless, but FUCK your primary care doc for being so confidently and destructively WRONG about SO MANY THINGS.

[vass]

* doctors always look for signs of autism and adhd in children
* it is rare if not impossible for anyone to get through school without all appropriate diagnoses

Both of those are so untrue it'd be hilarious if it weren't so tragic. ESPECIALLY at your age and assigned gender.

[ysobel]

I KNOW

And then me saying "but that didn't happen" is hostility, or something. Lolsob.

I have this thing where I was "too sensitive" as a kid and cried easily, and I got told that the teasing I endured at school was because they wanted a reaction so I should stop crying -- and I still sometimes stress-cry but mostly I've a) shoved the crying reflex down as far as possible, b) if that doesn't work gotten really good at just kind of ignoring the fact that I'm crying, and c) gotten so out of touch that sometimes I want to cry and can't. And I sometimes grumble that there would be times it would be useful to be able to break down crying, just to show that no I am not handling this okay, but I generally don't cry anyway (unless I'm allowing myself to be vulnerable).

...I was crying during the video chat with the doctor.

I think she thinks it's just me reacting to a) pandemic stress, b) decreasing physical ability, and c) anxiety, by grabbing at a different label and convincing myself that getting an adhd dx and taking meds will magically make everything better. Which ... (a) is plausible but it's more that pandemic stress is stripping away my coping mechanisms and it's becoming more obvious that there's underlying adhd stuff, (b) is complete bs, and (c) gee I wonder why my brain not working correctly and my doctor basically calling me a liar might increase my anxiety IT IS A MYSTERY.

[princessofgeeks]

So incredibly frustrating.

[threeplusfire]

This has been a week of people being so spectacularly wrong about things they should know how to do/know about. (Why have I EVER worried about not being good enough at a job when people are like THIS???)

Shitty doctors are the worst. God I was really hoping she would be better about this but WOW.

[cesy]

Wow that is a lot of wrong "facts".

[jesse_the_k]

I am so sorry she was such an unhelpful jerk.

Fucking ahistorical doctors -- I had a psychologist tell me "of course you would have been dx'ed in school" -- in 1965? O really?

Sending you strength.

[helens78]

THIS!! OMG yso I'm so mad on your behalf.

[niqaeli]

Jesus, I'm sorry. That is extremely awful on so many levels. I hope the neuro is more helpful/less wrong. <3

[killabeez]

Okay, wow. I mean, I'm glad she's been good about some things, but this is really ignorant and (I would argue) willfully blind, and unquestionably harmful, not just to you, but almost certainly others in the past.

[conuly]

* this includes dyslexia (oh my god the skepticism in her voice when she was telling me about another patient of hers that ~thinks she has dyslexia~ despite having gotten ~all the way to grad school~)

THE FUCK.

No, no, no, no, no. Schools overwhelmingly hate diagnosing dyslexia and will do literally anything to weasel out of having to do so. And since a private neuropsych is $$$$$$$$$$$$$$ (ask me how I know....) if you don't have that money in your hand, your kid doesn't get a diagnosis.

[conuly]

* adhd meds are stimulants and work the same way on all brains so giving adhd meds to an adhd person will cause more problems than it's worth

THE FUCK.

Okay, seriously, I could do that for every point on this list but why do that to you?

[ysobel]

Because apparently it's her job to decide what risks are worth me taking ¯\_(ツ)_/¯ Or something. It's baffling coming from her given a previous discussion where she was like "my job as a doctor is to give you the patient the information you need to make an informed choice, not to make decisions for you".

I mean yes it's possible taking Drug X will increase my anxiety, but it's not like once I take a med once I am obliged to keep taking it forever. I am perfectly capable of saying "no this is making things worse" or "no it's not worth the side effects" (see also: me not taking prednisone for the last few flare ups of FOP stuff, because fuck prednisone).

Really I think she thinks I don't have adhd, I'm just making it up, and so it would be Irresponsible of her to ... uh ... let me try to do something that makes life better?

(Also, like, my physical quality of life is kind of shit, but there's a chance maybe I could have better brain quality of life and not just be trapped in a brain that doesn't work, and mental health is fucking important.) Grrrrr.

💜

[prissi]

ha ha ha confirming this

[conuly]

That's 'cuz if they acknowledged that dyslexia even exists, just once, they'd have to remediate the damage caused by dyslexia + crappy early literacy education (whole words, ugh, don't get me started). And then do accommodations, but they'll cave on those if they think it can make you drop the remediation.

[prissi]

Hi Isa. It makes me sad to hear you had this experience, from a number of different perspectives, including "hi I was diagnosed in adulthood, but only after self-diagnosing myself after diagnosing it others a ton myself". And yes, that was after getting told I didn't have it, by a psychologist I got sent to after I was struggling lots in med school. ;)

If you have a referral to adult neuro, I'm afraid you may not really get much of anywhere -- they have even less training in managing this than peds neurology. Your best bet is honestly psychiatry, or maybe there are adult neurologists in your area that may be more familiar and known to handle ADD diagnoses in adults well. If you'd like, let me know what your insurance is and I can work on trying to help you find someone in your area (I presume you're still in NorCal?)

[ysobel]

I would love help 💜💜💜

Yes, NorCal, close to Sacramento. Insurance is blue cross primary, but also Medicare and Medi-cal. And honestly I'd be willing to pay out of pocket at this point, as long as it's not like five million dollars. But something covered by insurance would be nice.

(I tried telling my doctor like a million times that it needed to be a referral to someone familiar with how adhd presents in adult women, because it's different than assessing kids, but I don't think she really grokked why, or really paid much attention to what I was saying.)

[conuly]

It's not five million, but five thou is about what we paid. And btw, when we told the neuropsych we had Blue Cross/Blue Shield they said "Oh. Them." and with that in mind it's hardly surprising we were never quite able to figure out how to wrangle insurance into paying up.

[swingandswirl]

/offers hugs, cricket bat, and/or alibi, as desired/

Im sorry, bb.