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hEDS and HSD tumblr, I need some advice about getting a diagnosis and what the process is like. Basically, I feel that I don't meet the typical criteria for HSD (which is the criteria I feel I qualify for more), but I am definitely suffering thanks to some kind of hypermobility, and I want to know if a doctor will consider other kinds of hypermobility or symptoms that aren't on the Beighton Score.

More context below if needed (it's long, sorry)

So I do not have a diagnosis. I haven't been able to get one yet (saw a rheumatologist who denied me being at all hypermobile on paper despite telling me I was at the initial appointment, and every GP I've gone to so far thinks if they don't label it it won't exist). I only found out about this disability due to someone with hEDS pointing it out to me, and then later my therapist saying it's worth investigating.

I think it is the most likely explanation for what's going on with me (more specifically, I think I lean more towards HSD at the moment). But I've been trying out the Beighton score and found that I'm pretty sure I don't pass it. I can put my palms flat on the ground, bend my thumbs back, and I think my knees do overextend, but not to the point I would qualify. I am very hypermobile in a ton of other places and ways, though, but since it's not on the score I don't know if it would be considered. (I can pop out my thumbs, my jaw (both sides), I've nearly popped out my shoulder (which I'm not happy about because I need that for work), I think my kneecap has been subluxating (based on others' descriptions, and my own experience with my jaw popping out). I can't move my ankles a lot, which is something that I guess that rheumatologist thought was a clear sign that there could be nothing wrong with me (they're stiff because of repetitive injuries throughout the years, especially to one of them, and they constantly sprain with minimal effort). This isn't even everything, this is just the stuff I'm confident about.) I currently use a crutch almost full time due to all this.

Will all of this actually be considered, or will the doctor just go by the official test? I'm limited with my options for geneticists thanks to the country I live in, and my local hospital is notoriously terrible at handling referrals and will always forward rheumatology referrals to a hospital that is not easily accessible by me. (They're so bad that I have been referred for possible melanoma and they lost the referral. The only reason I got an appointment after nearly a year was because I know someone who works there. The same kind of thing has happened to nearly everyone I know. That person who works there has saved lives by pushing referrals and "missing" appointment dates)

I want to get the right help as soon as possible because it's reaching the point where I can't even go on a 30min walk without overexerting myself and leaving me unable to properly move for the next couple days (which is not helped by the fact that pacing is regulatory behaviour for me, like I need it to process my thoughts and feelings). Also ya know the pain that medication seems to have little effect on

Just,, is this going to be fruitless?

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I am in so much pain. Yippee woohoo. I can't wait for my appointment in *checks notes* 4 fucking weeks. When someone will tell me "yeah you're fucked up. No I don't know why. Do these exercises and get out and don't come back". I just wanna know what the fuck is wrong with my stupid ass joints.

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Can I just say, uh, I’m pretty sure noticing you’re asexual is harder than noticing you’re gay, straight, pan or otherwise. Like, I just read someone’s desciption of hitting puberty and, like, there’s nothing like that. There’s no sudden ‘boob’ moment, no sudden ‘fuck, I’d fuck that’ moment, not sudden anything. You just, like, plod on through life as usual going ‘oooh, that’s pretty, I’d like that hair’ or ‘oooooh, they’re nice, I’d like to be close to them’ but there’s no like, ‘oh, someone would want to fuck that but I don’t’, you know? You just- you don’t notice, you don’t realise everyone else has ‘had a moment’ but you haven’t, you just- keep going as you always have.

And then, much much later, you start to wonder why people are getting so caught up in drama for romance or sex, like, why bother? It’s not worth it, they’re not worth it, why are you doing stupid things for something that’s so- and then you wonder if there’s something wrong with you, start mentally over compensating. Like ‘uh, okay, um, who should I date? Who can I stand to date? Who could I stand to fuck?’ like- it’s not, it’s not something you want, but you want to fit in, to be normal.

Sometimes you don’t even know that you’re doing it.

Sometimes you don’t even know asexual’s a thing.

I dunno, I guess, I just feel like, uh, people should understand more?

idk sorry thank you for listening to me

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Ugh I need to stim so bad but my stim is pacing and my physical disability fucks over my ability to walk

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"aromanticism and asexuality exist separate from each other and people who are aromantic and not ace deserve to exist in peace outside of the ace community without constantly being mislabeled as ace or erased from existence" and "people who are aroace and people whose experiences fall into both communities but who don't use the SAM are allowed to view their asexuality and aromanticism as one and the same thing, without being told they're mislabeling themselves or that they're harming the aspec communities by not clearly separating their experiences into either 'ace' or 'aro' categories" are statements that can and should be true at the same time

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It's been said before but I'm saying it again: being mentally ill and very self aware of it is extremely annoying because it's like:

My Brain: You are worthless and everyone is making fun of you.

Me: Uhh, no? I just had an extremely minor, low stakes misunderstanding, and everyone was very cool about it. It's fine. No need to panic.

My Brain: [immediately dousing itself in cortisol] You don't get to decide that. Now I'm cancelling all of the dopamine and serotonin. You can just sit there and think about your unforgivable error.

Me: Wildly unnecessary, but ok I guess

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I wanna know why doctors refuse to listen when I say that something doesn’t work or makes the pain worse. (Sorry for the rant I just need to get something off my chest)

For context I had to go into hospital and the doctor wanted to give me a gel that was supposed to help muscle (I went to the hospital because of severe skeletal pain) and I’ve used it multiple times in the past and the only thing it did was make the pain worse and when I told the doctor this she just said “it won’t happen this time” (something I’ve been told more times than I can count). And then said she’d prescribe me a different gel.

So I go pick up my prescription and what a surprise it’s the fucking gel that doesn’t work. So now I’m just sat here fucking infuriated because the doctors wouldn’t listen to me AGAIN. But I know if I don’t even try to use the gel then the doctors won’t believe me again.

I don’t know whether to laugh or cry I’m genuinely so pissed off and I don’t know what to do.

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I’m no professional, so I could be wrong here, but two people, one of which has it, have suggested I have EDS. The more I look into it, the more it seems to line up with many of the issues I’ve had throughout my life.

And the doctor I went to about an old ankle injury, who told me I’m hypermobile, and that it was definitely affecting my ankle and its ability to heal, is here saying “yep no signs of EDS on my end. You’ll have to go to a geneticist about that.”

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are you normal about disabled people. are you normal about visibly disabled people in public. are you normal about wheelchair users. can you treat them like people instead of obstacles. can you look them in the eye. can you say hi to a disabled person without making an awkward reference to their disability first thing. can you mention disabled people without acting like they're some rare endangered species. can you talk about disabled people without feeling pity, sadness, or grateful for your own life. can you open the door for a disabled person without making it a big deal. are you normal about disabled people

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I’m in so much pain that I can barely stand and the dog keeps jumping on me and bc of the angle I’m sitting at, to push him off (hes heavy as shit and I can’t deal with that right now) I have to use the limited strength I still have left in my legs which is also extremely painful bc of the angle (lose - lose). And my mam is fucking laughing at me. Constantly. She thinks it’s so funny while I feel like my hip is going to dislocate.

And then I get fucking fed up bc I’ve been in so much pain for hours now and I can’t even grab some pain meds bc I can’t walk. And so I push the dog particularly hard after he gets the worlds largest amount of slobber all over my only clean pair of trousers. Again, I’m really fucking frustrated and honestly I’m starting to get genuinely upset. And my mam is laughing again. And I tell her about my trousers. And she laughs and says that I can just go up and change and she can throw them in the wash for me. And I inform her that I’m in too much pain to walk right now. And she says “did you not get yourself pain meds?” And I say “I am in too much pain to walk right now.”

And she just stops talking. Not even a sorry. Not an offer to grab some for me. I can’t even self-sooth bc my self-soothing behaviour is fucking pacing. I’m stressed and I want to cry but my brain won’t let me while I’m in company so ig I’m just going to have to suffer more.

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Being disabled but not looking disabled honestly sucks ass.

Need a seat at the bus station because your heart is trying to explode and you can't breathe? Sucks to be you ig, you don't need a seat beacause you can walk.

Sitting in the priority seating on a bus or train because you physically can't stand up any longer? Fuck you, you're stealing seats from those who need them.

Use the lift because your body is incapable of surviving the stairs? You're a lazy, unfit, piece of shit.

Wear a sunflower lanyard so that people are aware that you are disabled? You're an entitled arsehole and deserve to die.

Honest to god it's a fucking nightmare. I'm not able bodied but, because I look like I am, I can't possibly be disabled. What is wrong with the world? Why are people so damn intolerant?

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rb to give the previous person a fucking break because life aint life-ing the way its supposed to life and it fucking sucks.

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Absolutely terrible that my self-soothing stim thing is pacing, something becoming increasingly less possible due to my injury + shitty joints

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Having to spend the past 10 minutes explaining to my sibling that yes, fiction influences reality, but that one random person shipping a toxic/abusive couple and posting art about it is not telling people to go beat their partners. Like if you don’t like what they ship stop looking for it. It’s not a crime to like things you don’t, even if those things are crimes irl

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nobody talks about the fact that you can have all this crazy shit in your head, and want to open up and talk about your feelings but no matter what, you just can't make out the right words and properly put your thoughts and emotions into words

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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!

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At a meeting to discuss gender equality and thank fuck for my table agreeing with me on the fact that gender takes too much priority. It shouldn’t be “how can we get more women in this and more men in that” it should be “how can we make sure that anyone of any gender can participate in this with equal ease/difficulty”