If you ever tell a disabled person that they can do anything they put their mind to, you personally owe me $10,000.
When I was in primary and high school we often had PE. I would of course be the slowest and clumsiest person on the field who always got tired way before anyone else. I don’t know about anywhere else, but at my school, sport was status.
I have distinct memories of Friday afternoon non-PSSA cricket. The entire time I was fielding, I felt like I was going to pass out, I could never catch anything. When I was batting, I could hear the groans and laughs from my team because I could only rarely hit the ball, and when I did it was never far.
I can clearly remember teachers telling me I wasn’t trying hard enough. That I was lazy and unfocused.
But here’s the thing. I did focus. I put my mind to it. Every single time.
I loved the feeling of running, when it didn’t make me feel like my bones would slide out of place.
The things those teachers told me? I believed them. Of course I did, what else was I going to believe? Society has a very strict and narrow view of what constitutes a disability and I am the first person in my family to have an active EDS gene.
When my health deteriorated significantly further and I discovered I had hEDS, my view on all my memories changed.
I don’t currently have the words to describe the sheer fury I now hold towards all of these people.
Moral of the story is that telling us we can do anything we put our minds to isn’t just ignorant, its downright harmful. Even now I still feel the flush of shame when someone says I can do something I know I can’t.
Besides, the very definition of disability means there are things we can’t do. So accept these differences and accommodate for them, don’t just pretend that our disabilities don’t exist because they make you uncomfortable. That’s your problem.
Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesn’t have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.
For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Don’t believe me? Well I can’t even tell you how many compliments I’ve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!
The company is also family owned and the people are so sweet and helpful!
If you are having trouble with hand pain, clumsiness and dislocations please check out this amazing company!
I’m literally crying right now. I will be able to use my hands!!! As it stands I can’t do dishes, hold things, write, hold books, type, without pain or dislocation. Oh my gosh. This is a miracle.
@peaceypanic
those are gorgeous and that is amazing how well they’re working! signal boost!
I love these things. I use one for my thumb because due to arthritis I have very little strength/support in the joint and therefore often can’t do anything. My splint makes it possible for me to do my job, do the shit i need to do and not have as bad of pain.
these are so cool
omg the first ehlers danlos post I’ve seen, this makes me happy!
We love Siris Ring Splints (silverringsplints.com)! But we know not everyone has the same price points or style so we have a whole page of splints (and braces too) oer on PrettySick Supply so you can shop your own style and cost! And a lot of the folks we’ve found are others with EDS and hypermobility issues who support themselves by selling the splints they make!
It’s not scraped or anything. The best I can tell, that’s a weird trash bag handle pinch mark, from carrying them out to the curb. Sort of like a half-assed blood blister. None of the bags were even that heavy ¯_(ツ)_/¯
(It also doesn’t actively hurt or anything. Just, wtf?!)
Blaming lousy collagen. Which usually seems to be a safe bet whenever strange skin things happen.
It took me seeing about 4 NHS doctors, two of whom were musculosketal specialists, over the course of 8 months before I gave up and paid out of pocket to see a private hypermobility specialist to get my hypermobile Ehlers Danlos Syndrome diagnosis, a year after I started presenting symptoms.
I know that I’m fortunate – it “only” took me a year to get diagnosed, I had the resources to afford a private appointment for my diagnosis, and I have the resources to continue to pay for private treatment by a physiotherapist specialising in hypermobility. I’m also lucky enough to have a GP who understands and believes me when it comes to all the weirdness that comes with EDS, and will take me as an expert in my own condition.
Most people aren’t this lucky. EDS is becoming more recognised and more and more people are recognising their symptoms and pursuing a diagnosis, but the NHS still hasn’t implemented a formal diagnostic process. Post-diagnosis, patients are just abandoned. Complications and comorbidities are poorly understood and diagnosis and treatment of the rarer ones such as mast-cell activation syndrome (MCAS) and craniocervical instability (CCI) isn’t readily available on the NHS, forcing people to crowdfund for further private diagnoses and treatment.
The NHS is failing EDSers, and something as simple and bureaucratic as an established care pathway would improve so many lives.
Even if you don’t have EDS, please share and sign – it’s an official government petition so you won’t get spam emails and it takes under a minute.
A specialist recently told me that what your label is (meaning your diagnosis) doesn’t matter because no matter what you’re diagnosed with the symptoms and getting treatment/management for said symptoms is what they focus on and what you should be focused on and your diagnosis changing won’t change that.
Honestly though? I disagree diagnosis’s and “labels” are important to the patients even if they aren’t to the professionals. Maybe in the medical community they care more about your symptoms than what your diagnosis is (although I can confirm that this 100% isn’t always the case, especially when you’re undiagnosed) but in the real world it matters.
It matters if you need to access certain treatments that require a formal diagnosis.
it matters if you’re at risk of developing certain secondary conditions, complications or injuries
It matters when you’re trying to get future medical help or another diagnosis.
It matters if you need help or support at work, school or college.
It matters if you need to apply for disability benefits, a disabled badge or home adaptions.
It matters for your mental health. when you’re worrying about what your symptoms might be caused by.
It matters (unfortunately) when other people ask why you haven’t been able to do x and y for so long and you don’t have a “real” answer so people think you’re exaggerating or faking because if there was something *really* wrong they’d be diagnosed with something right?!
Not only is it important for the above reasons (even though being diagnosed doesn’t always help with the things above) but my illnesses are part of my identity, part of who I am and being able to label myself as a disabled person with hEDS, fibromyalgia etc. Is empowering and gives me a sense of pride and self acceptance. Those labels come with a whole community which have given me a sense of belonging. Being able to talk to others who know what I am going through makes a huge difference and helps me to feel less isolated and alone. Finding people going through the same thing quite literally saved my life.
When it comes to identity, I feel the same way about my sexuality. Being bisexual is part of who I am and having that label, being part of a community has made a huge difference to how I feel about myself and helped me to get over my internalised biphobia. My sexuality is part of my identity. My disabilities are also part of my identity. The only difference is that people are usually encouraged (and occasionally even pressured) to label their sexuality but when it comes to disability and illness people, especially medical professionals don’t want you to label yourself.
Maybe we need to look at why and stop seeing illness as something bad and negative that we need to hide from the world and start seeing it as a part of who some people are and something they identify with.
Not to mention there are some things that go along with certain conditions that would be super helpful to know on advance – like how EDSers often process anesthesia differently?
You know what doesn’t sound fun? Randomly waking up in the middle of surgery.
Also, how certain symptoms are treated can vary GREATLY depending on the cause.
Like, Pepto and Tums aren’t going to cut it if your nausea is from Gastroparesis.
Any doctor who says labels don’t matter, I will personally diagnose them with a case of These Fists.
EDSers process anaesthesia differently?! Is that considered to be an official symptom of eds?
I’m only asking because I’ve always had problems with local anaesthetic not working fully or taking ages to work. Also I usually need a lot of extra for it to work at all. My mum who also has hypermobility type eds has the same problem. (I’ve Never had general anaesthetic so I’m not sure if it affects that too but I’d be terrified if I needed surgery.)
Local anesthetics have never worked right for me, and I was also very interested to find out that it’s a common EDS/HMS thing. Was going to add a couple of links, but searching on “EDS local anesthetic” turns up a lot.
I was glad just to find out that, no, I haven’t just been imagining that, and it really is way more effective for most people. Getting the relevant people to listen has been more of a problem. The last time it came up with trying to convince the NHS to cover some serious dental work under sedation (successfully!), I took some printouts along.
Just in case it might help on shorter notice, I also got this Local Anaesthetic in EDS keyring Card. That hasn’t come up so far, but with any luck having something to show them might help the issue get taken more seriously. Something to maybe consider for anyone who might need a little backup.
From what I understand, general anesthesia thankfully isn’t usually the same kind of problem with EDS/HMS. I’ve personally never had trouble with it working properly, and haven’t seen people reporting it.
(Though I do have apparently unconnected problems with getting extremely sick for a couple of days afterward–with very high fever, vomiting, and delirium so that they’ve been afraid it was infection. The last time I had surgery, I told the anesthesiologist about it in advance, and changing the blend of drugs did stop that from happening again. For anyone who might have run into similar issues. I don’t think they ever told me the details, and it’s been a long time, but that is apparently a known thing.)
Me rolling into the doctors in a box labelled “Some Assembly Required.”
Still more gratifying than it should be, though, knowing what’s going on there.
Maybe especially with the fun pattern of “dentist inevitably tears your gums all to hell, then makes unflattering assumptions and lectures you about hygiene, is possibly even rougher the next time”. Nope, that’s just how they are because lousy collagen 😵
I really liked the one who was all, “That shouldn’t cause bleeding! *purposely jabs at a few other places with the pointy metal implement to see what happens* *promptly decides it’s my fault I keep bleeding at them* *starts lecturing*”
(Then again, I also ran into one who decided that obvious demineralization from the celiac must also be poor hygiene. That’s not how anything works…)
Ridiculous Annoyance OTD: Forgetting to do a thorough antiseptic mouthwash rinse before I went to bed. Popcorn strikes again! 😬
I should maybe go ahead and try buying some “hulless” variety, with the aggravatingly fragile gums and my apparent inability to stop eating the stuff. When I know full well there’s a decent chance I’ll be feeling it later.
I could tell last night that some inflammation was starting up, and while the rinsing doesn’t totally fix it? It usually calms down a lot faster if I do. Thank you executive function! 🙄
This time it’s making it hard to chew on the one side of the mouth where chewing works. Both the top and the bottom at the back of that side. Annoying, hopefully it will calm down again (and a couple of molars will stop freaking itching too) ASAP. Soft food in the meantime.
I’m hypermobile, but not flexible at all – which meant I didn’t realise I was hypermobile for a long time, and still means I fail certain tests for hypermobility, that uniformly assume flexibility.
And…my inflexibility is actually closely linked to my hypermobility.
My muscles are constantly tight and seizing…because they’ve literally spent the last 30 years holding my skeleton together.
I’ve had so many doctors and PTs and MTs over the years comment on how well-developed and tight my muscles are. I deal with near constant musculoskeletal pain, and I get migraines when the muscles in my neck and shoulder spasm. This gets amplified hugely when I’ve had a full dislocation – my muscles will be spasmy and inflamed in that area for days. And conversely, it’s no coincidence that as soon as I take a muscle relaxant, my bones decide to just hold a fucking rave inside my skinbag.
So like, yeah. The fact I’m not bendy at all actually makes perfect sense in the context of hypermobility.
JUST BECAUSE YOU’RE NOT BENDY DOESN’T MEAN YOU’RE NOT WOBBLY.
Urocyon's Jaunts 2.0 
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