Insightful Blog on the Satisfaction of Diagnosis
Friday, September 8th, 2017 07:12 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jesse_the_khttp://www.theferrett.com/ferrettworks/2015/04/i-hope-you-get-officially-sick/
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the minute you can condense your symptoms into a singular diagnosis, and have That Phrase on your sheet, it’s like getting upgraded to first class on the airline. Suddenly, doctors have to agree that you must be taken seriously – sure, you’re in the exact same amount of pain you were in before, but they can’t hand-wave it off. When they see That Phrase on your chart, they actually stop and read back to see what they were missing, because That Phrase makes you somebody important.
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This blogger also writes about writing, and posts pictures of amazing nail art:
http://www.theferrett.com/ferrettworks/ferretts-pretty-pretty-princess-nails-a-gallery/
(no subject)
Date: 2017-09-09 06:13 am (UTC)I haven't gotten round trying another rheumatologist yet. Because I'm over ten years in on this shit, and I'm fucking tired and I got lucky as fuck and landed myself a GP who listens and believes me and thinks pain is worth treating regardless of WHAT the underlying cause is, so my symptoms are at least managed. But I'd like the goddman shiny Magic Phrase, and... yeah. *sigh*
It's never simple, but diagnosis can be fucking magical. It was magical for my brain shit! If goddamn only it was as easy for everything else.
WE WANT ANSWERS & WE WANT 'EM NOW
Date: 2017-09-09 06:02 pm (UTC)When I got the DX for my brain shit, it retrospectively lined up flocks of ducks in a row. Oh! There are meds for this!
And over a decade I learned that, well, yes, meds for BP work most of the time, but I'm still the fucking special snowflake. (At this point I have to trot out my most-absurd-side-effects ever, because I'm kinda proud of them: Lithium made me able to whistle in tune; Lamatrogine made my hair curl.) No magic bullets for me.
So the diagnostic magic boost can also be illusory.
Bodies, who knows?
(no subject)
Date: 2017-09-09 05:31 pm (UTC)A very good post, to which I recommend everybody click through!
Date: 2017-09-09 06:05 pm (UTC)One hour is hella quicker than the years we spend in limbo.
Ugh.
Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-09 11:36 pm (UTC)[TW cancer, ableism feels]
My neighbor just got a rare cancer diagnosis, and his wife has been around chatting with others in the household for support, etc. Also because it was one of those cancers where they could only tell so much from labwork, and they were going to try surgery and best case was "whoops sorry it was just gallstones" and worst case was "it's spread everywhere, we will just close you up again, get your affairs in order." Which, is really not very reassuring?
But I really needed time and space before I could check in with how they were doing, because my first reaction that I worked very hard not to say out loud to them was OH NO YOU HAVE WAITED A WEEK FOR A DIAGNOSIS. Like, I didn't say it, but it's been decades of "well that's...interesting..." (What I ended up saying was, "Find a surgeon that you trust, and if you feel better but don't know exactly what kind of cancer it is at least you feel better right? Also let me know if you Netflix recs")
The other thing I did not tell my neighbors but thought to myself is that it's a good thing he's the one who presented with weird jaundice-like symptoms, because medical sexism is real and they caught the cancer just in time. So any delays because "well maybe it's just lady anxiety" = probably death.
Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-09 11:47 pm (UTC)Netflix recs we got, that's for sure. I'm really enjoying BETTER THINGS right now--only-in-LA premise, but still Pamela Adelon's vision of her life has 908% more reality than most things on the box.
I've witnessed a slow change in the introduction ritual, thanks in large part to the internet. When I was initially diagnosed (only 5 years) with ME/CFS, there was at least a LISTSERV to share experiences and "how to live like this."
But when I first got ill, there were only in-person support groups. Which, y'know, when you're flat on your back in bed for a year, getting to a support group seems impossible. (To be fair, there were also telephone trees but I don't do telephones.)
Still and yet, I see so many people diving into the wreck of their health, and then when they surface, asking, "Wait! What? Isn't my doctor going to help me live? What am I supposed to do now?"
Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-10 12:01 am (UTC)(I mean, my mom also has Lupus, but she is like most nurses the worst patient and also kinda invested in the medical model. I needed some bad crips to help me navigate the current effed up medical system.)
Like just humor at the ridiculousness of it all? One of those friends is on dialysis and whenever I ask him how he's doing he's like "well I'd be FINE if my insurance company would stop mandating that I take these suicide inventories. Like gee, thanks for reminding me how much dialysis sucks." and then we gripe about all this bullshit together, and it's less bad.
I'm also eternally amused/frustrated by the irony of the fact that I was taking a sociology class that was going to cover the social model of disability, but I had to withdraw from classes that semester because my health went to shit so I never got to attend those lectures. I did read some of the course readings (mostly by John Hockenberry) and it helped, but if I'd known *more* about the social model of disability when I first got sick? Like, actually had class discussions about it? That would have been nice too.
Even with all that help from other disabled people, there was definitely a dark, dark period where I tried to use religion to heal myself and it actually just ended up being a shitshow. But the moral of that particular story is trust your gut, and not neopagan chiropractors who tell you such gems as "people who aren't on disability tend not to be as sick, it's all about your attitude" when they first meet you and find out you have a disability.
Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-12 12:45 am (UTC)Asking dialysis patients to fill out suicide inventories is truly Monty-Python level nonsense.
I also had disabled mentors, but they were a tad orthogonal: healthy blind & Deaf people. The crucial thing was modeling solidarity.
Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-11 03:07 am (UTC)Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-12 12:46 am (UTC)Re: A very good post, to which I recommend everybody click through!
Date: 2017-09-12 02:18 am (UTC)(no subject)
Date: 2017-09-09 06:51 pm (UTC)