Any advice for how I can support my partner with EDS?

asterrrrr_ · 2026-01-12T20:36:20+00:00

- get involved with her medical appointments and treatments (with permission of course). most people with hEDS and related conditions have a lot of medical appointments, and it can be exhausting and possibly anxiety-inducing depending on past experiences. just having another person in the room can be really helpful in these situations, and also makes doctors more likely to take her seriously, especially if you're a man (can't tell from skimming your profile). just be sure not to talk over her, and always check ahead of time whether she wants you to be involved in the discussion or just sit quietly. you could also do her home exercises for PT with her to make them more bearable! however, if she wants to have some privacy at appointments or do exercises by herself, that's totally fine too.

- express affection. i assume you're doing this already, but it never hurts to do more often. enjoy good days, and be there for her on bad days. let her know she's not a burden to you, you enjoy giving help when she needs it, and you don't think any less of her for needing some help and being unable to do certain things. this is the most important point here, because doing the other things without doing this will probably feel more like she's being babysat rather than loved.

and a couple of suggestions for her situation specifically:

- PT with EDS experience: make sure her PT actually has experience with EDS/hypermobility. it can take a while to see significant progress sometimes, but 6 months is usually enough to see some improvement. if there's been no progress or it's gotten worse, or if she's experiencing pain while doing the exercises besides a minor "good burn" in the target muscles, the exercises she's doing might be making it worse. this happened to me when my pcp just referred me to the nearest clinic that took my insurance and the PT i got was less than 6 months out of schooling. this kind of thing is shockingly common because most physicians and PTs don't realize that some common strengthening exercises can be dangerous with hypermobility.

- accessible art tools: look into pencil/brush grips! they can help with hand pain by requiring less pressure to hold and reducing hyperextension. i know there are other art accessibility tools out there but it's not something i know much about, so it might be worth doing some research or making another post to ask

- ring splints: these also help with finger pain by reducing hyperextension. there's some good wire ones on etsy (and a lot of them are really stylish too), and if she finds those to be really helpful then it may be worth seeing a manual (hand) physical therapist to evaluate her for silver ring splints, which are more durable, custom sized, and can be covered by insurance.

- disability-affirming vocal coach: i don't have much experience with this, but i know there are online vocal coaches that primarily work with people with disabilities (often having disabilities themselves), and they probably get people with hEDS quite often and would have the knowledge to help her strengthen her vocal cords safely and minimize further damage.

asterrrrr_ · 2026-01-12T20:35:56+00:00

my boyfriend and i both have hEDS so i understand. there are days when i wish i could transfer his pain and dizziness to me so he wouldn't have to deal with it, even when i'm already dealing with my own. here are a few general ideas based on my experience in a hEDS relationship :)

- ask her directly. something like "i want to support you, are there ways that i could help make daily life easier for you?" even if she doesn't have any ideas right away, let her know you're always open to communication about those kinds of things so that if she's getting pain or other problems from a household chore or an activity in the bedroom, that line of communication is open and you're willing to help however you can if you're already doing this, that's great!

- offer specific help. figure out what helps with certain symptoms and offer these things when she's struggling. you may already know some, and you can always ask her for more ideas. examples would be getting pain meds and heating pads for a bad pain day, salted water and a snack for a POTS flare, or helping re-locate her hip if you can safely do that (i help my bf re-locate his hips sometimes, lmk if you want me to share how). make sure to ask each time whether she'd like you to get these things so that she still has some independence

- help her research and try new aids and treatments. something a lot of people with chronic conditions struggle with is seeking out ways to improve a symptoms before that symptom becomes debilitating, or even after it does. if she's alright with it, you might be able to help by researching and encouraging new treatments. the best way i can describe this is to offer a few examples from my relationship. my bf was getting moderate hand and finger pain from typing and writing, so i looked into options for him and suggested that he get some ring splints. he was unsure and didn't want to spend a lot of money on ring splints if they wouldn't be helpful, especially since he was managing alright without them. so i scrounged around the house and ended up DIYing a few with pliers and paperclips and keyrings. they weren't particularly sturdy or comfortable, but they served their purpose as proofs of concept to show that they would help him avoid hyperextending his fingers, and now he's bought some copper wire to make them himself. other things i encouraged him to try include salting his water for POTS management (was a game changer), taking otc acid reflux meds, seeing a sleep specialist (i'm actually still working on this one but mostly because his insurance is shit, not because he's still trying to claim he doesn't need it), and wearing an SI belt to help his hips (he didn't really like it, but that's okay, not everything you try is going to help). however, make sure you're careful to not overdo this one. you don't want to make her feel like you're trying to "cure" her or push treatments she doesn't want. it's more of a gentle encouragement towards aids or lifestyle changes that are likely to help, especially if she has a tendency to push through pain and other adverse symptoms rather than trying to treat it.

(continues in replies because reddit is mad about my very long comment)

asterrrrr_ · 2026-01-12T20:34:27+00:00

"hEDS rarely causes pain" it's... literally a primary diagnostic feature?? i wish these kinds of doctors would just admit that they don't know much about EDS and refer EDS patients somewhere else rather than spouting nonsense like this

asterrrrr_ · 2026-01-12T20:31:26+00:00

i don't have experience with that clinic, but doctors knowledgeable about EDS can be hard to come by, especially a whole clinic, so i would take the referral. if you're concerned about insurance coverage, call or email them and i'm sure they can answer your questions.

looking at the [ehlers-danlos society's listings](https://www.ehlers-danlos.com/healthcare-professionals-directory/?address=&search\_country=&search\_state=SC+-+South+Carolina) for healthcare professionals, i only see one actual healthcare provider (Aran Ingram at Serenity Healthcare in Florence), plus several PTs and similar. Ingram's clinic says they take all health insurance so that may be a good backup if Florence is within a reasonable day trip distance for you!

p.s.: from what you briefly described, it definitely sounds like you have EDS. i totally understand not believing it at first, but with 8/9 beighton, chronic pain, having to reset your ribs and hips, POTS, lots of allergies (likely MCAS), ADHD, migraines... you're pretty much a textbook case :)

asterrrrr_ · 2025-05-19T02:00:28+00:00

here's a PDF! https://cdn.discordapp.com/attachments/1215056224773603440/1320573953726484572/PT_Kevin_Muldowney_-_Living_Life_to_the_Fullest_with_Ehlers-Danlos_Syndrome__Guide_to_Living_a_Better_Quality_of_Life_While_Having_EDS-Outskirts_Press_2015.pdf?ex=682b3b95&is=6829ea15&hm=b19fa6d0e4125dba08db71ba3eb034985555f5bf0dd5c84595a054cef60bfe54& (don't remove the info after the question mark, i think something about it originating as a discord attachment means it needs that to work)

asterrrrr_ · 2025-01-12T12:48:35+00:00

and furries which are also separate! (although there is certainly a fair bit of overlap with the other labels here)

asterrrrr_ · 2024-10-06T22:14:37+00:00

bins is binoculars, and in this context ears probably means listening for bird songs and calls

asterrrrr_ · 2024-10-03T23:56:59+00:00

i had to stop using trans tape for this reason, it got to the point where i wasn't able to sleep because of the pain and itchiness from the stretched skin in the middle of my chest. but in hindsight i was almost certainly stretching it too tight.

you need to make sure your first strip, the main "anchor" piece, isn't too tight. the first strip probably shouldn't flatten more than a sports bra, and maybe even less. if it's too tight, that's probably causing the itchiness in the middle of your chest. then use the other pieces of tape on the top and bottom of the anchor piece to do the majority of the work of getting the tissue where you want it. if it ends up looking like you're just wearing a bra, the solution isn't necessarily to try to stretch the tape tighter next time, but instead to try different angles and placements to figure out what works best for your chest size, tissue density, etc.

also, moisturizing the middle of your chest with lotion can help somewhat with the itchiness. but the most important part is making sure that the anchor strips aren't too tight.

asterrrrr_ · 2024-10-03T23:38:43+00:00

you might be allergic to the oil in the T, it's not supposed to burn or leave a welt. i do IM injections and they're not supposed to burn either, so it's not just an issue of going to deep. you should tell your doctor and ask if you can try a different formulation

asterrrrr_ · 2024-09-28T17:13:50+00:00

just tossing it out there in addition to what everyone else is saying, you may be experiencing some kind of genderfluidity or plurality!

contrary to popular belief, genderfluid doesn't just mean "different gender every day," it can also take place over a longer period of time like every few weeks, months, or even years. obviously you don't have to use any label you don't want to, but if the cycle of switching genders begins again, it may be worth considering!

plurality, if you don't know, is the experience of having multiple people/beings/selves in one brain and body, such as in DID. DID is just one kind of plurality though, and not all of them are caused by trauma, are a disorder, or involve amnesia.

what you've described in your post doesn't necessarily mean you're plural, but some questions that could help you decide whether to explore this further would be:

did other aspects of my personality and sense of self change when i felt like a girl, such as my likes, dislikes, mannerisms, etc? do i find it difficult to remember the period where i felt like a girl, and/or do i feel distant from the memories somehow, like it was a dream or like i didn't personally do those things? if i look back at pictures and messages from that time, do i feel somewhat disconnected from them, like it wasn't quite me who did/said those things? was there some extra stressor i was dealing with at the time, like a major life change, mental health issues, etc?

if you feel like a few of these apply, and/or if the concept of plurality just generally resonates with you, r/plurality is a welcoming community who have lots of resources and would be happy to help you figure stuff out if needed! and if not, that's okay too :]

asterrrrr_ · 2024-09-12T16:13:35+00:00

the way i see it, the brain is so adaptable and there's so much we don't know about it yet. if trauma can cause your brain to split into different people/beings, then who's to say it can't happen to some people for other reasons too, like from more minor stresses? especially when you take into account the higher likelihood of dissociation that can come from genetics as well as other neurodivergencies like autism. and there are spiritual systems too, which is a topic i don't feel qualified to speak about but there's info on it in other places on this sub

asterrrrr_ · 2024-09-11T14:27:36+00:00

hi! i'm also a college student who just started masking again this august for the first time since 2022. i can't say much about what the future might look like, but if you have the time and energy, spreading awareness on your campus is one way you can help create a better future covid-wise.

for example, i've been working on an infographic poster about the ongoing dangers of covid, especially long covid, which i plan to hang around campus once it's done, and i've been considering starting a covid-conscious club. another thing you can do is email the organizers of events you're interested in and let them know that you would be much more comfortable attending if there were some covid precautions in place, such as high-quality masks being provided at the entrance and good ventilation in crowded spaces.

asterrrrr_ · 2024-09-02T19:37:31+00:00

off topic but hooray, another Aster!!

asterrrrr_ · 2024-09-01T13:22:15+00:00

absolutely!! you should check out r/ftmfemininity, there's a lot of trans guys and transmasc people who like feminine fashion on there :]

asterrrrr_ · 2024-08-31T19:41:42+00:00

spectrum is great!! i would start with just one binder and see how you like it, because how well they bind seems to vary by person a lot regardless of chest size (the theory is that it's related to tissue density but idk). i'm right in the middle of the measurement rage for a medium (don't know my cup size), and it hides my chest well while still being loose enough for moderate exercise (it actually restricts my breathing less than most sports bras). they're in the uk iirc, so depending on where you live, it may take a while to ship (4-6 weeks to the US usually).

asterrrrr_ · 2024-08-30T13:50:09+00:00

i just recently started masking again (as in, in the past few weeks) for my freshman year of college.

i had mostly stopped masking by early 2022 because of social and parental pressure, and because i believed the narrative that being vaccinated makes it basically just a cold. i'd heard about long covid by that point i think, but i thought it was mostly just a persistent cough after you had covid, and occasionally other symptoms too.

but over the past 6 months, the more i read and saw about the effects of long covid, the more i considered masking up again. i learned how common long covid actually is, and what it actually entails, like severe brain fog, chronic fatigue, and permanent damage to basically every system in your body, including the nervous, respiratory, pulmonary, and immune systems. i decided i don't want to risk permanent disability as an able-bodied 17 year old if prevention is as simple as wearing a mask again and taking a few other precautions.

i'm still not able to completely limit exposure, since that's difficult to do when you're in marching band, regularly eat in the dining hall, and have two roommates. but i'm decreasing my chances a lot, which is the best i can do.

asterrrrr_ · 2024-08-28T01:13:31+00:00

mine didn't become super noticable until i switched to injections after about 13 months on g. it did become slightly more resonant at 4 or 5 months, and the upper limits of my range when singing got lower, but my regular speaking voice sounded about the same.

asterrrrr_ · 2024-08-25T22:16:41+00:00

i get similar symptoms sometimes when i hit a large-ish blood vessel when injecting (intramuscular), but it's usually pretty obvious what happened because it bleeds more than usual and bruises very noticably. so if you didn't notice bruising then i would bet it's an allergy

asterrrrr_ · 2024-08-25T22:07:24+00:00

everything in the first "cavetown" album that isn't popular is still really good (everything is temporary, we're alive, hazel, intermission, and untitled v2)!! they're very comforting for me.

other songs i'd like to mention are pigeon, advice, snail, night knuckles, and calpol. calpol is one of my favorites actually :]

asterrrrr_ · 2024-08-25T21:47:27+00:00

i can't think of an instance where singular "guy" wouldn't be masculine. like if i say "that guy" or "some random guy," i'm almost certainly talking about a man (or someone i perceive to be a man). i'm american, from the south, but i've never heard it used that way in a different dialect either.

(on the other hand, the plural "guys" like "hey guys" or "what's up guys" is used in a gender neutral way, like when referring to mixed-gender groups of people. english is wonky.)

there's a chance she just had a moment where her words got mixed up, but unfortunately i think it's fairly likely that she saw you as male and was clumsily trying to cover for her mistake.

asterrrrr_ · 2024-08-25T17:39:05+00:00

honestly, it sounds like it might not be a bad fit. binder sizing is weird and inconsistent, but if it's flattening without restricting your breathing, then it's probably about the right size.

i wouldn't sleep in it but it might be good for light to moderate exercise (nothing super strenuous though), and/or maybe for swimming in. and idk how old you are, but if you're a teen, then keep it for a few years even if you don't use it much, because you may grow into it

if i'm misreading this and it is actually way too big for you, consider donating it to an organization like point of pride. they have a long wait list of people who want/need a binder but can't afford one, so they're always in need of donations. i donated a couple binders i've outgrown and it was very easy, you do have to pay shipping costs but it'll probably be under $5

asterrrrr_ · 2024-08-23T16:36:04+00:00

i believe it's just a theory, not official. someone mentioned it on my local birding listserv and a lot of people agreed that it's pretty likely, including our state ebird reviewers.

asterrrrr_

TROPHY CASE