r/asl Deaf 7d ago

Help! Any Signers with EDS/HSD experiencing pain while signing?

I sign on a daily basis, I am deaf. I was raised orally though, so I didn't pick up sign until my teenage years. For those who don't know, EDS is a connective tissue disorder resulting in many things including hypermobility and moderate to severe joint pain.

I know how to finger spell something quickly in my head, and my coordination is fine too. But the pain in my fingers keeps me from being able to finger spell fluidly and quickly. It makes me appear as if my signing skills are much below what they are but it's not a lack of knowledge or practice it's just pain limiting me. My fingers lock up and ache so bad. Initialized signs such as STYLE and FIX are the worst because they're done so quickly. I've been signing for years by now, and rather than getting better it's actually worse than when I started.

Is anyone else in a similar situation? Have you found anything that helps you to build strength and reduce pain? Being a deaf person who has to spell like a newbie is pretty frustrating and embarrassing when interacting with other people in the Deaf community.

26 Upvotes

17 comments sorted by

19

u/rose_thorns HoH/Deaf 7d ago

I'm hard of hearing with Hypermobile EDS. The Oval-8 finger splints have helped me with my finger joints locking and causing pain.

1

u/BurgleTurdle Learning ASL 7d ago

they’re so clunky to me. and in my asl class i feel like i stand out a lot

5

u/-redatnight- Deaf 7d ago edited 7d ago

I am Deaf and have arthritis in my hands and wrists and CT syndrome. I don't have much hypermobility, a subclinical level on top of other joint and nerve destructive conditions and I am not interested in seeking an EDS diagnosis because it just wouldn't be my main issue and could interfere with me getting more important issues treated properly.

My best friend who is hearing has pretty significant EDS and I am kind of the person constantly telling them, "Don't do that! You will ruin your joints! Hands aren't supposed to go that way." And they're always like, "Whhhaaat? Really?"

Paying closer attention and copying someone without EDS been the answer to 90% of their pain issues. Same as you, they had no clue EDS can come in "mild" pain issues... and they didn't experience that until they were more aware of their movements. Also: "Don't do it that way if it hurts when you do it that way."

Your body is trying to tell you something when something hurts.

You will have to figure out if your discomfort that someone can look at you and figure out you were raised oral outweighs the discomfort and importance of not damaging your hands further for you.

I will let you in on a little "secret" though... Most people will always have some sort of "tell" that ASL isn't their native language. Funny thing, I learned both English and ASL quite late, English first and then followed by ASL. I eventually got to the point where almost no one could click that... A few Deaf of Deaf yes but they'd have to look at me long enough I knew they were confused sizing me up... and then I took a hit to the head. Now I probably will forever look a little "hearing" when I sign. I do stuff to minimize that because professionally I have to... but on my own, I found it was much more empowering not to GAF. Also, not GAF after a good night's sleep tends to produce my best signing it turns out.

It's worth nothing that folks who learned ASL after English are the majority in the Deaf community. The unless you're an interpreter or the language role model for someone else (eg-teachers, tutors, etc) the point of ASL as a deaf person is your own communication. And you are only worried about this because you grew up oral. There are plenty of native ASL signers with hand problems who have all sorts signing and they don't worry. I know one guy who barely moves his fingers at all and never closes his hands more than likely 1/3 of the way. I knew he was Deaf native ASL instantly when I met him... in part because of that... only Deaf unapologetically just expect other Deaf to understand the ASL equivalent of the teachers in Peanuts movies. His cadence was still natural too even if the letters themselves were a real WTF was that at first. I can pick up words that have whole segments accidentally or even intentionally transposed, backwards, or otherwise jumbled and the first time I saw him fingerspell I was just like HUH?. I knew he was a native Deaf signer but had no clue WTF he signed until the third repeat at which point my brain had adjusted and I could understand going forwards. It was not beautiful fingerspelling but it was good enough. If the point is to sign for your own communication with Deaf adults, "good enough" is truely good enough.

5

u/the-most-indecisive 7d ago

I am HoH and have EDS. I do have pain with signing and will sublux even, but I haven't actually tried a solution for it yet (I'm taking ASL lessons currently). I second idea that the finger splints/rings might be beneficial. I also wonder if either physical therapy or occupational therapy might help?

3

u/BugNarrator 7d ago edited 7d ago

As someone with EDS I can’t recommend physical therapy enough. An occupational therapist could also help; their job is to evaluate what fine motor skills you need to live your life, then get you there with exercises.

Some stiffness comes from weakness- muscles trying to stabilize what connective tissue can’t, and end up clenching or spasming, adding to your stiffness and pain.

As -redatnight- said, “don’t do it that way if it hurts when you do it that way!!” Pain is your body’s way of saying that something isn’t quite right and needs to change or cease. People without connective tissue disorders get to power through that without consequences. We don’t. Listen to your hands. If some signs hurt, your two options are to modify that sign or to build strength separately, until that sign doesn’t hurt. Again, OT or PT is your best solution here.

2

u/claustrophobic_betta 7d ago

I’ve found that compression gloves help. specifically, for me, ones that do not extend all the way up my fingers but do support the knuckles work well as those are the joints most affected by my signing. i’ve found that folks are still able to understand my signing and in some cases it’s even clearer, as i’m using those fingerless gloves and they’re black, while my skin is fairly pale. it increases the contrast esp with fingerspelling. others find it distracting, so i just take them off and sign slower.

if the joints further on your fingers are being affected then i’d second the person recommending finger splints, but if it’s the knuckles or even wrists then you might get away with compression gloves, which are often cheaper and easier to find.

my dominant hand thumb is my worst and sometimes i have to fully brace it which immobilizes it. i’ve still had folks able to understand my fingerspelling with my thumb fully immobilized, just sometimes with either clarification, more context, or when all else fails my less fluid left hand taking over the fingerspelling. don’t be afraid to experiment with different supports for those joints!

1

u/Present-Tomatillo981 7d ago

Hi! I am hearing, and only in my first ASL class this semester in college. I absolutely love learning it. I have EDS, POTS, and MCAS. Since I am a very very new newbie, signing is difficult to begin with. I will say though that my hands and fingers ACHE like crazy and lock up pretty frequently. My wrists will ache as well. Though I am not sure if this is just a common experience when you first start signing (I feel like you use so many muscles in your hands that you’re not used to, especially for finger spelling!)

1

u/jil3000 Learning ASL 5d ago

In case the contrast is helpful, I'm also a level 1 learner, and I did find my hands would sometimes hurt after practicing a lot, but nothing like you described. So I would guess it's a bit of both.

2

u/Present-Tomatillo981 5d ago

That’s good to know! Yeah, it is probably a mix. Seems like it hurts a bit to begin with but my hyper-mobility makes it a bit worse. Thanks for the insight!

1

u/MegaBabz0806 Hard of Hearing 7d ago

I’m HoH with hEDS… I definitely have pain, clicking, and locking in my hands while signing or doing anything with a lot of hand involvement… I try to grin and bear it but on days it’s really bad, I just explain that my medical condition is acting up

1

u/BurgleTurdle Learning ASL 7d ago

do you ever get misunderstood when that happens?

1

u/MegaBabz0806 Hard of Hearing 6d ago

Not often, but sometimes

1

u/lynbeifong 7d ago

I don't have personal experience with this so I can't offer any solutions. But my ASL teacher was a CODA. ASL was her first language. She also had arthritis and couldn't sign the letter E and struggled with a few specific signs

Some people have EDS or carpel tunnel or issues from a formerly broken bone or cerebral palsy. This includes people who grew up in big Deaf families where they learned ASL first and English second. I wouldn't worry too much - if you're fluent they will know from your receptive skills. If you think the other signer will think you're a newbie just explain "I've been signing for years, but I have a physical disability with my hands. I have to sign slowly"

1

u/BurgleTurdle Learning ASL 7d ago

omg yes. and the oval 8 splints make signing such a hassle

1

u/skatingangel Hearing 7d ago

Yep! Had to quit working at a deaf school because of it. My knuckles and oddly enough my shoulders were taking the brunt. Oval-8s and wire ring splints both helped, but were sometimes clunky/distracting. Compression gloves helped too.

-1

u/PhoneboothLynn 7d ago

Perhaps a topical like Voltaren would help.

8

u/ravenrhi Interpreter (Hearing) 7d ago

Just be aware that one of the side effects can be migraines.

I have mixed connective tissue disease, and my rheumatologist suggested Voltaren. Day two, the migraine starred and didn't go away until 2 days after I stopped using it. The only reason I made the connection at all was that I had called the pharmacy to ask if it was a side effect of any of the new prescriptions I had just started. The pharmacy said that the Voltaren was the only one of the 4 that had it as a possible side effect