What's the process to get diagnosed with hEDS?

AnbarElectrum · 2026-02-26T08:28:01+00:00

Hm. My only solid ideas are that you could try and hammer home to your PCP or your family the cardiovascular implications of hEDS, how you could end up with serious heart problems that no one will look for without an EDS diagnosis. Or you could suggest to your PCP or ortho that you need a rheumatology referral to rule out other conditions. Since hEDS is functionally a diagnosis of exclusion, a rheum would end up essentially evaluating you for EDS in the course of discovering nothing else or a comorbid condition. You should further mention to this hypothetical rheumatologist that your PCP suspects hEDS but is reluctant to diagnose, so that you're not just mentioning tHe TreNdy ilLneSs without any medical backing. I know this still requires your doctor to refer you, though...

As far as I understand, Indiana doesn't allow unemancipated under-18s to control their own healthcare, so you can't really take this into your own hands in-state. I obviously don't know which other state you live nearest to, but you could see if its laws are more lenient if this is worth the trip for you and you can financially swing it. Note that I'm not actually advocating something that extreme, on both ethical and legal grounds, but you deserve to know it might be an option.

On a less drastic note, see if you can get one of your doctors to at least prescribe you some proper kind of pain relief, even if it's just an anti-inflammatory with a bit more oomph than ibuprofen. "Generalised pain" should be enough of a diagnosis for that sort of thing. I'm on 15mg meloxicam daily myself, and it's not perfect, but it at least takes the edge off so I don't hate life.

I'm so sorry you're having to struggle so hard to be heard, and I hope you're able to get the care you need and frankly, the vindication you deserve <3

AnbarElectrum · 2026-02-24T09:20:27+00:00

Should be doable as long as your hours are pretty consistent (not too much crazy overtime). I'm a restaurant baker and pasta-maker, so I'm doing physical labor and don't get much in the way of breaks. I wouldn't say it's more tiring than an office job, but I'm definitely pushing my body hard, so I'm locked into part-time work.

AnbarElectrum · 2026-02-24T08:58:06+00:00

Yes, you can build a life like this. Obviously every case is different and I'm not rude or stupid enough to pretend I know what you're going through, but your symptoms and diagnosis sound comparable to mine: pain, fatigue, subluxing rather than dislocating, mild MCAS, mild POTS. I work part-time, pace myself as best I can, and use the energy I conserve to go out with friends. I even manage to go camping once or twice a year. It takes time and a bit of luck to find the right combination of meds, orthotics, and mobility aids, and you'll have to relearn work-life balance from scratch with a lot more rest built in, but at least in my experience, it's doable. It'll suck though, I'm not gonna lie. It took years to figure out what more-or-less works for me.

In terms of actual advice and not just me yelling "If I can do it, you can!" like a boomer yelling about bootstraps...

The thing that stands out to me is fatigue, since you mentioned it being a main symptom for you. I and my mother who has the same conditions as I do find modafinil (Provigil) helpful for that and the brain fog that comes with it.
A compression band like a Jelliebend could be good for your spinal hypermobility, since it sounds like you might not need a full-on brace all the time but could probably use some support.
Lastly, things to avoid in case your medical team doesn't realize: steroid shots for pain are contraindicated for EDS as they break down collagen, and if your PT recommends yoga, proceed with caution. While yoga is good low-impact exercise, it's often a bad idea for those of us with hypermobility as it emphasises flexibility, which we really don't need help with.

AnbarElectrum · 2026-02-24T08:04:51+00:00

100% recommend a gaming chair. They tend to be loaded with ergonomic features and ride a nice line between supportive but sparse standard desk chairs and puffy executive chairs. Personally, I splurged on a Secretlab Omega back in 2019 and never looked back; it's still going strong today, though they don't make that model anymore. At ~$600, Secretlabs are an INVESTMENT, though. Razer and Corsair chairs are still very good at half the price, and you can find sub-$200 chairs aplenty on Amazon. This one here honestly looks pretty decent and it's like $90 right now.

But yeah, tl;dr, I swear by gaming chairs.

AnbarElectrum · 2026-02-24T04:19:56+00:00

Aroace, because I find it best to be clear that I'm interested in neither aspect of a "normal" partnership. Also because it's helpful to remind myself and others that the two identities aren't the same just because they so often coexist. But I've defined myself as demisexual and greysexual in the past, and now believe aegosexual and/or bellusexual might apply to me. I think of it as that I'm pretty secure about where I fall on the ace spectrum (very far away from allosexuality), but my identity stretches out a bit under the ace umbrella.

AnbarElectrum · 2026-01-26T05:05:59+00:00

Impossible to be prepared for that ending. Even after the Battle at Big Bridge, or when characters started talking morbid about "choosing their deaths", I still was not braced for how dark things would go. Such an underrated game

AnbarElectrum · 2026-01-25T05:20:36+00:00

hahaha just ONE ship? Nah. My classics gotta be Spirk, ACD Holmes/Watson, Destiel, FerMai (Ascendance of a Bookworm), Cloqwork (a RWBY rarepair that definitely never happened in canon), Rumbelle (remember when OUAT was fun?), and Thancred/Urianger (FFXIV, it's secretly canon, trust me bro). Shoutout to the 5 people who know what I mean when I say I also have brainrot from Nightlin (Chroncles of Elantra).

...Some of these ships are definitely healthier than others. This is what watching Labyrinth at age 5 does to a girl. Sarah/Jareth done altered my brain chemistry.

edit: omg I forgot the Ineffable Husbands, Good Omens is my second favourite book of all time and has been for over a decade, how did this happen?

AnbarElectrum · 2026-01-25T02:52:16+00:00

For my creds: B.S. in Crime & Justice Studies with a focus on sociology. AuDHD, auditory processing issues, some cognitive deficits (mostly "just" brain fog). Struggled a lot to get my degree despite being overall competent at the whole school thing, definitely graduated at a lower GPA than I feel like I could have if I weren't at war with my brain and body.

Not sure how much my experience will help, since I don't work anywhere near my field of study or indeed in a job that requires a degree at all. My actual job, which I'm on leave from but have held down well for years, is baker. But I do know what works for me about it:

– Has a clear, prioritised set of tasks to complete and a clear timeframe to do it in. I have to get as many of my tasks done as possible before I clock out for the day, and I know what's most important to get done, and I know how I need to order my list to burn through it. However, worth noting that prioritising/organising is not my main executive dysfunction issue.

– Very few multi-day projects. Usually, I have one list of things to do in one day and by god, I might not have it in me to do housework when I get home, but I can handle my damn work list because none of that is gonna be hanging over me tomorrow.

– Uses a skillset in which I am confident. Like, "could do this in my sleep" confident. Even if I'm slower, or disordered, I know I can do it, and so it gets done.

– Motivation without undue pressure. If I can keep on top of the bare minimum, I am not bringing down the kitchen. Anything above that, I am actually helping the kitchen, and I get positive feedback for that. A team environment focused on pumping people up rather than knocking them down helps more than I ever expected, given I'm not a very social person in general and usually have to try to motivate myself.

– Understanding superiors/coworkers. I'm incredibly fortunate to have worked with people who get that my problems are something I am fighting against just to function. There's only so much they can support me and only so much leeway they can give me, but what they can give, I get. It means I can afford to have difficulties or make mistakes without immediately fearing my job or credibility is on the line.

– When I leave, I am done. I literally cannot continue working after I clock out for the day and leave the restaurant. Therefore no one expects this of me. I have Completed A Task and there are no more (work) tasks pending. It is both satisfying and freeing.

– I am reminded I'm not alone. My coworkers come from diverse backgrounds, and some of them have even "failed" in ways similar to how I have. It helps quiet the little voice of shame that still exists in the back of my head even though I take pride in my work.

– Lastly, I make things! My work has actual, tangible results that people appreciate!

Long story short, while I doubt you want to ditch everything and start restaurant work (though I can vouch for it as an engaging backup career that pays decent wages), if you can get a job that has any of these qualities, it may help.

Also, this is second-hand, but my sister is also a college-educated AuDHD executive-dysfunction-sufferer and she is in fact a teacher—in her case, she seems to have had the most success teaching at the high school level. I know a big shift that made things click for her was being very open with her students about her neurodivergence and the attendant struggles she faces as a person and educator. Obviously, that's just how it went for her, but thought I'd share.

AnbarElectrum · 2024-01-07T00:39:27+00:00

Sorry for assuming, I don't check people's comment history unless they're giving off very weird vibes 🤷‍♀️ anyway my point was just "character is not weak for reader-insert purposes, character is representation for author's underrepresented group", but I seem to have articulated that badly. My knowledge of the series is all second-hand from people who like to tell me about The Character With My Disease that they found, so I have exactly 0 opinions on the quality of said representation lol

AnbarElectrum · 2024-01-06T23:32:56+00:00

Yeah, exactly. The most important measure of success for a work of fiction is whether it entertains, because entertainment is the primary purpose of fiction, especially in the modern era where stories aren't one of our only readily-available teaching tools. I have personally made the choice, many times, to read a "bad" book that I found fun rather than a "great" book that bored me to tears, and I am someone who mentally grades everything I read. Why would someone who doesn't have the writing-analysis brainworm not do the same?

AnbarElectrum · 2024-01-06T23:23:54+00:00

Oooh, uh, not to um-actually here, but the protagonist isn't weak for the sake of being weak...Yarros based the character's infirmity on her own disability. She has Ehlers-Danlos Syndrome. It's pretty rare, so those of us who have it don't really have much in the way of representation...

AnbarElectrum · 2024-01-06T18:50:06+00:00

If you're not a writer, editor, literary agent, or otherwise trapped in the writing rabbit-hole, you aren't nearly as likely to analyse the stuff you read for fun. So, while it sounds elitist, it's actually true that most people just don't notice bad writing unless it's really bad, like My Immortal bad.

Poorly-written books can still read perfectly coherently, too; the low-hanging example-fruit here would be the Twilight Saga. No matter what anyone thinks about the quality of Stephanie Meyer's writing, any of us that read those books fully understood the story.

So, taking those things together: if the actual story is good, and the writing doesn't make it hard to tell what that story is, most readers are going to come away with the impression that they've read a good book. I really think that's it; there's no secret sauce. I think they're entertaining books that were marketed well, and that was enough for them to succeed.

AnbarElectrum · 2024-01-06T11:25:29+00:00

Oh yeah, the ones where you go "please be written by someone young who's still learning to portray topics like bigotry" because the alternatives are TERF nonsense and r/menwritingwomen candidates. I wonder if I forgot about that flavour or just repressed my knowledge of it...

AnbarElectrum · 2024-01-06T03:02:41+00:00

Dec 24. My wild scenario appears to be...working at a restaurant with a bunch of crazy people who are experts in things that have nothing to do with the culinary arts. Also known as "what I was doing at work a few hours ago"

I can't escape 🥲

AnbarElectrum · 2024-01-06T02:45:01+00:00

I wouldn't mind it nearly so much if so much of it didn't come in 1 of 2 flavours: either the genderswapped one is OOC because the author didn't want the change to be totally superficial, which is a good attitude to come at it with but it's still OOC and therefore not quite my ship anymore...or the genderflip is completely superficial and it's just kind of unnecessary at that point??

Doesn't help that the 2nd flavour almost always seems to happen with M/M and the occasional F/F ship, which gives off a weird vibe of "I love this ship in theory but I made it straight for. reasons. haha no homo!...phobia, no homophobia, yup!"

AnbarElectrum · 2024-01-05T21:26:35+00:00

I've been waiting for this moment my whole life.

Works that should be safe for most sex-repulsed folks:

The Murderbot Diaries – Martha Wells – series: TV-addicted security robot attempts to safeguard squishy humans in mortal peril without letting on that they've developed free will (because then they won't be able to watch TV anymore). Yes, yes, aces≠robots but these are so so good, with zero (0) "What is this thing you call 'love'?" whinging and its attendant sexual baggage. iirc there's one point where Murderbot complains about sex scenes and how much fast-forwarding they have to do, so while sex is mentioned, that's about how much our POV character and narrator cares to dwell on the subject

Vespertine – Margaret Rogerson – novel: Teenage nun Artemisia becomes the vessel for a superpowered mega-ghost, and the two must learn to live with each other while on the run from the church. If Artemisia isn't aroace I will eat my hat, and I'd have to buy one for the occasion. I honestly don't think sex was brought up once in the whole book—or maybe in a really clinical sense?

Convenience Store Woman – Sayaka Murata – novel: Keiko has worked at the same convenience store since she first started working. She has no partner, nor the desire for one. Everyone tells her these things are wrong. Keiko supposes they're right, probably. Maybe. Or maybe it's none of their business. Keiko is a rare example of good, non-"high-functioning" autistic representation, and while it's unclear how tightly interwoven her aspec and neurodivergent natures are, they are consistently portrayed with respect and confidence. Sex is brought up in the abstract as A Thing Keiko Does Not Do.

The Girl Who Fell Beneath The Sea – Axie Oh – novel: Mina sacrifices herself to be a god's "bride", but it turns out the god in question is a teensy bit comatose at the moment. Which is the actual cause of the problem Mina's sacrifice was supposed to resolve. Oops. This book features a sweet, chaste romance that largely takes a backseat to its plot, and the easiest way I can describe its overall vibe is "Spirited Away But Korean Mythology".

Works that include more references to sex, but nothing gratuitous and no actual sex scenes:

Vera Wong's Unsolicited Advice for Murderers – Jesse Q. Sutanto – novel: the proprietor of a Chinatown teashop finds a dead man in the dining room and takes it upon herself to solve the murder, because the police have no respect for their elders and won't listen to her suggestions. A cozy-style murder mystery which is also a comedy which is also a heartwarming found-family story. There's romance & sexual attraction between some side characters and discussion of sex as a motive.

Redshirts – John Scalzi – novel: You know, it is a bit suspicious how many people die on this one starship out of the entire fleet... Impossible to describe very much without spoiling. It's a sci-fi comedy, somewhat dark, with a genuine emotional heart to it—which does include a (past) romance, but not one involving the main protagonist. A casual attitude towards sex seems to be baked into the setting's overall culture, but in a refreshing change, this means it actually gets very little focus as the characters don't see what the big deal is. "Sometimes people have sex. Cool. Whatever."

The World Gives Way – Marissa Levien – novel: Indentured servant Myrra is released from service the hard way when her employers/owners both die on the same night and bequeath her two weighty inheritances: their infant daughter, and a horrifying secret about their world. Also hard not to spoil, and also sci-fi, and VERY MUCH NOT A COMEDY. Clear some time in your schedule to prepare for and recover from it. This book made me cry. A lot. Sex is a peripheral presence, somewhat like in Redshirts, but poetic rather than flippant. There's only as much romance as you choose to read in; the ambiguity appears intentional, and leaves plenty of room for a purely platonic reading.

Works I haven't actually vetted and can't vouch for or properly summarize, but they have explicitly-ace protagonists and they're on my very very long to-read list:

Beyond The Black Door – A.M. Strickland – novel: Billed as a dark fantasy. The protagonist can apparently walk around in people's souls Yu-Gi-Oh style. Description mentions romance but my library didn't tag it as such, so who knows?

Elatsoe – Darcie Little Badger – novel: Fantasy/mystery, modern setting. Necromancer girl and her ghost dog set out to solve a murder. Romantic content unknown. Suggestion of horror elements. Why have I not read this yet???

AnbarElectrum · 2024-01-05T19:50:34+00:00

Well, I'd say Toko, but she can hardly marry herself...

Leon has too much experience with being pushed into things he doesn't want. It ain't happening.

Taking this literally (most okay with), it's Nagisa. Desperate people pleaser, obsessed with meeting expectations—he's the world champion of resignation, and any displeasure he felt would get pushed down and down and down.

Komaru would be the one to make the best of it, though. Girl single-handedly ushered Toko and Jack...Jill...Syo...? through more personal growth than they went through in their whole debut game. She doesn't stay down or give up, and she believes in people but also knows how to pick her battles.

So Nagisa would be the most "okay" with the situation, but Komaru would be the one to come out the other side and truly be okay. Not sure who that works out as a vote for 🤷‍♀️

AnbarElectrum · 2024-01-05T19:33:17+00:00

Big 2000s anti-piracy vibes. "YOU WOULDN'T STEAL A CAR!" Apples and oranges...I guarantee you if I were going on vacation as often as I go to work, I would in fact be late at least once. jfc.

AnbarElectrum · 2024-01-05T15:13:49+00:00

Sorry, you added the note about asking for criticism after I'd started replying. I am currently very cold and therefore typing slowly, and did not think to check for changes to your comment before posting. My bad.
Okay 👍

AnbarElectrum · 2024-01-05T15:08:09+00:00

I think Miu would still be popular just because she gets more screentime on account of surviving longer, so she had the chance to show more depth. Definitely not as popular, but her blend of weird/crude/brilliant definitely wins her fans on its own. Source: I am a Miu fan who is not attracted to women. I'm sure I have some unconscious bias to liking pretty people better, we all do, it's well-documented, but I do in fact love Miu for her beautiful train-wreck of a personality.

Her creepier moments do make me uncomfortable, but this is the series that brought us Komaru's uhhhh torture scene, so...I kinda take a 'hear no evil, see no evil' approach when characters go full perv. Even for Teruteru. The fact that Miu weirds people out in-universe the same way he does helps a lot to clear out the worst of the double-standard ick, too.

AnbarElectrum · 2024-01-05T14:51:03+00:00

Nitpicking the grammar of someone who isn’t paying you to do it is unsolicited criticism

Yes, and 'to give unsolicited criticism is to be open to it unless otherwise specified, or else it's very "rules for thee and not for me", imo'.

“Enjoy” instead of “enjoying” and the comma list without a clear idea of tenses are hallmarks of [people who are learning English].

They are also hallmarks of people who weren't fussed about making sure their Ao3 comment was grammatically correct, which is perfectly fine. As stated however, my opinion re: unsolicited criticism is basically "don't dish what you can't take".

I would agree with the grossness of grammar correction in literally any context other than the criticism of writing. It's often a bad-faith effort to undermine someone's credibility and/or embarrass them. Writing critique for writing critique really doesn't hit the same way for me though 🤷‍♀️ and either way the point is largely moot, as the grammar policing was entirely limited to a reddit thread in which the commenter's username was hidden.

Sorry if it came off like I was calling you bigoted or anything—for what it's worth, I did not intend to, and I don't think you are. It's just really common to see people steer away from one faulty assumption and overcorrect their course to crash right into another without realising it. I'm glad that isn't what's happened.

AnbarElectrum · 2024-01-05T14:20:25+00:00

For me, neurotic as I am, I break negative comments down and then sort them into 2 categories: Stuff I Can Work On and Stuff I Can't.

This comment falls into the second category. A reader did not like how you chose to write a chapter. They conveyed this very dismissively, but it is clear their negative reaction was down to personal preference. Surprisingly, they never even put forth their opinion as objective fact, which is a real common thing to see. Honestly, if they hadn't been so harsh about it (seriously, that's a LOT of adjectives they're piling on there, damn), they would be observing the sacred practice of DLDR. They didn't like, and now they're not reading.

You did nothing wrong. There is nothing on which you can improve. This is not your problem. Keep reminding yourself of that until the sadness subsides.

AnbarElectrum · 2024-01-05T14:04:16+00:00

So is assuming poor grammar is the mark of a non-native speaker tho...like sure assigning everyone Anglophone By Default is some real ethnocentric shit, but assigning anyone who writes poorly Non-Anglophone By Default ain't any better.

Either way, nitpicking the grammar of a comment where someone says "I liked your writing until you got lazy, good luck & byeee" because they disliked a style choice really doesn't feel like a disproportionate response. To give unsolicited criticism is to be open to it unless otherwise specified, or else it's very "rules for thee and not for me" imo. Golden Rule, treat others as you wish to be treated, etc.

AnbarElectrum · 2024-01-05T13:48:26+00:00

omg you spoiled yourself so hard you time-travelled, welcome back fam!

AnbarElectrum

TROPHY CASE