connective tissues more like connective issues

hEDS, ASD, migraines, cluster headaches | noah, 28, male | main: sypress

[demilypyro]

Ok wait let her speak

[dontbeanass-deactivated20240801]

Please give evidence beyond “I hate them” or “I like sleeping in” or “I have to get up early”, none of which is actual evidence

Signed

an actual morning person

[princecharmingtobe]

Night person who needs to see a doctor/get your car worked on/go to the bank/buy groceries, etc? You're gonna have to sacrifice sleep for it. Because for some reason it was decided that most places of business should open in the morning and close in the evening. Fewer and fewer places are 24/7. Wanna go for a nice stroll in the park? Tough shit, they close at sundown. Hell, want to just go for a walk in general? Fair chance of being harassed by the cops because being out and about in the dark is "suspicious" behavior. Want something that's not fast food and don't want to/can't cook for yourself? Best we can do is a diner like Denny's or IHOP. Got a loved one in the hospital you want to visit between work and sleep? Either gotta get up early or stay up late to meet visiting hours.

And let's not forget, no matter how little you actually sleep and how much you actually get done, if you're not awake during certain hours it means you're a lazy good-for-nothing. Express a desire for more places open 24/7? Selfish and entitled. Complain about how noisy your neighbors are during your sleep hours? Well you can't expect the world to tiptoe around you. But also you'd better keep it down at night because other people are sleeping!

But don't worry! There are plenty of guides on how to "fix" your sleep schedule out there! You just have to follow a strict, often disruptive routine that you can never stray from even a little or else you'll fall back to your natural sleep schedule lazy, undisciplined ways.

[doomhamster]

And at that, good luck finding a job that doesn't expect you to be in by 9 AM at the latest. Which means getting up at 7:30 AM at the latest, earlier if you have a commute. Which means getting to bed at 11:30 PM at the latest.

Which means night owls have a straight choice between self-employment/freelance work, with all its insecurities, or constant self-torture. (Oh yeah, sleep deprivation does count as torture, per the UN.)

[jenroses]

Don't get me started on school schedules.

[crazy-pages]

Poor sleep shaves years off your life too.

But seriously I don't know if I can accurately describe how fucking tortuous this is to morning people. Imagine you had jet lag so your body was on 4 pm when you had to go to sleep and at 12 am when you had to get up, and you never acclimated to it. Never.

Every single fucking day for your entire fucking life, you have to do that. And the rare days you're allowed not to? You'll mess up your sleep schedule even worse by indulging in your body's natural rhythms for once, and also for some goddamn reason in the US a whole bunch of stuff is only open during work hours or in the morning on Saturday. So you're running on fumes from struggling to get enough sleep and feeling like you're waking up in the middle of the night five days in a row, and now you have to do it again on your day of rest to go to the post office.

It's fucking sadistic.

[kelpology]

being disabled will really have you thinking/saying things like “yeah i’m not really THAT disabled. as long as i take my meds twice a day (and as needed), eat and drink exactly the right things, keep the perfect balance of being active and resting, the weather is stable, and nothing unexpected happens AT ALL… i’m totally FINE! i probably should not even call myself disabled at this point because i’m doing so well!”

if you don’t want to call yourself disabled, that’s fine and it is your choice! but if you’re only “fine” or “doing really well” when a bunch of different variables are all lined up perfectly, then maybe you are not fine actually. just a thought!

[salt-baby]

yes, doctors suck, but also "the medical ethics and patient interaction training doctors receive reinforces ableism" and "the hyper competitive medical school application process roots out the poor, the disabled, and those who would diversify the field" and "anti-establishment sentiment gets applications rejected and promotions requests denied, weeding out the doctors on our side" and "the gruesome nature of the job and the complete lack of mental health support for medical practitioners breeds apathy towards patients" and "insurance companies often define treatment solely on a cost-analysis basis" and "doctors take on such overwhelming student loan debt they have no choice but to pursue high paying jobs at the expense of their morals" are all also true

none of this absolves doctors of the truly horrendous things they say and do to patients, but it's important to acknowledge that rather than every doctor being coincidentally a bad person, there is something specific about this field and career path that gives rise to such high prevalence of ableist attitudes

and I WILL elaborate happily

[fibro-memes]

[jointswhatjoints]

finally got my meeting with the occupational therapist, and I think it went well! she was kind and understanding, and on my page about assistive devices and aids. i was however completely stumped when she asked what i wanted to do.

i've been ping ponged around with my disability so much and that's the first time i've been asked what i want, and i had no other answer than "uuuUuuHhhHuh go out?"

she thought an electrical wheelchair can help so i can go outside more and be able to shop independently, and i'm just having a whiplash over the doc going "no!! no cane, you'll die" to this.

but damn, the internalised ableism of it all. i feel apprehensive of using a crutch to get to the bathroom in the middle of the night like the disability police is gonna gun me down in my own home,,

[janeacular]

can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use

[jointswhatjoints]

oh the internal conflict of identity in being male and disabled (and other marginalised identities) where people swear to fight your corner only to the very next sentence accuse you of your own oppression, inability of self insight, and inherent badness.

in disability we're far to often at the mercy of others to be seen, heard, to get a chance at autonomy. yet I can't count the times my frustration and fear has been read and treated as anger, when friends have told me without reservation about how men are the source of whatever problem they're having, when harm caused to me by women has been dismissed. I understand the need to vent, but it's like they see my disability and I don't count, what they say doesn't count, my lived experiences don't count, anyone outside of the narrow, binary narrative is pushed aside by force.

being a man and being disabled are treated like incongruent categories. I've been scared to admit to myself the hurt in being accused, categorically, of the socio-hierarchal structures that contribute to my own oppression, I think in part because if I did, I'd feel even more isolated in the struggle against an ableist society.

[nondivisable]

"everyone should care about accessibility because most people will become disabled at some point in their life" is a logical argument and I understand its popularity

however, everyone should care about accessibility because disabled people are fellow human beings living in the same society as you who deserve the same rights as you

thank you good night

[lupusbaby]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[jointswhatjoints]

no, hypermobility doesn't necessarily mean EDS, it doesn't necessarily mean it's systemic, clinical or even symptomatic. being bendy is very common, it doesn't mean your connective tissue is mutated

stop spreading misinformation, we're having a hard enough time being taken seriously by doctors

[treks-men]

but! remember that if it regularly effects your day-to-day negatively, you have every right to go to a doctor and seek treatment/dx for a hypermobile spectrum disorder! take care of yourself and just try not to let your anxiety about any non-symptomatic hypermobility take hold :)

[jointswhatjoints]

excellent point and important addition, thank you!

[jointswhatjoints]

no, hypermobility doesn't necessarily mean EDS, it doesn't necessarily mean it's systemic, clinical or even symptomatic. being bendy is very common, it doesn't mean your connective tissue is mutated

stop spreading misinformation, we're having a hard enough time being taken seriously by doctors

[jointswhatjoints]

andddd i reblog one post abt struggling w selective eating and now my recommendations are flooded pro-ED content

moderate your platform tumblr?? this is actually fucking harmful

[teaboot]

Kind of a random hill to die on rn but "You'd eat this thing you hate if you got hungry enough" does not set a reasonable expectation of what "hungry enough" means for people with food problems.

Like, are we talking "stomach grumbling" hungry enough, or "can't stand up" hungry enough? Cause personally, I can make myself eat a bit of a pork chop if I'm barfy and shaking and can't see straight anymore, but if it's down to "black out for three days and wake up angry and confused" or "willingly swallow prosciutto", I'm having sleep for dinner. And I know this from experience.

People without food problems don't seem to understand this and it drives me insane. "Hungry enough" is for shit like chewing drywall because the alternative is death or cannibalism.

If I say I can't eat something, It means I can't eat it. It Is Not Edible To Me. It's not even appetizing. It literally does not register as food. You might as well hand me a rubber duck.

And it's frustrating!! Trust me, I wish I wasn't like this, too!! This isn't a choice!! I know it can be rude!! It's embarassing!! It's complicated and annoying and irrational!! That doesn't fix the problem!!

I just wish people didn't treat this sort of thing as "being picky" or lacking willpower or basic manners or something. I can't make myself eat certain foods the way you probably couldn't cut your own fingers off. Does that make sense? It's not just food. Fuck

[jointswhatjoints]

(small warning for mentions of ableism and just general system frustration)

SO i found out i can request an appointment with the local occupational therapist without a referral, and they actually help solve problems??? what do you MEAN they won't throw beta blockers on me like i'll get up the stairs if i'm also blacking out ??

bit shocked none of the sectors i've been in touch with (which is Every) have suggested it. last physio i had was game for various supports but of course couldn't troubleshoot my living space. docs and assistants and coordinators alike have just shrugged and pointed at each other. municipality have suggested half a dozen times to just put me in a home instead.

both frustrated that i had to have a late night eureka moment on my own to find out, and tentatively hopeful i might get help to have an actual life this time around.

[strangestcase]

I think people would armchair diagnose bad people with cluster B disorders much less if psychiatric disorders hadn't all been given names by ableists who of course picked the traits most unberarable to "sane" people to name them rather than, you know, the ways it affects the people that have them. It's like, when doctors are all "this disorder gives you extremely low self esteem. and it's called the Selfish Fucking Asshole Disorder" or "this disorder makes you want to die so bad. and it's called the Hysteric Bitch Disorder" or "this disorder disconnects you from your peers. and it's called the Insane Evil Cunt Disorder" and so on and so forth, so of course you have people going "oh, this person is a selfish fucking asshole, they MUST have Selfish Fucking Asshole Disorder! this further proves that all people with this disorder are like that in the first place!" Do You See It

[jointswhatjoints]

also hi again to all of you!!

saw i hadn't updated my age in my bio in three years, it's really been a hot sec since i posted regularly on here