#generalized hypermobility

[consider-your-potatoes-mashed]

I just want to know what’s wrong with my body. Why is it so hard to get that? I just want to have answers. I just Want to live life with appropriate treatment.

[madrivervalleyicelandics]

TW pet loss

Big long reflection post under the cut. Wanted to say it all somewhere that doesn’t have a character limit.

We are about a year out from when we put our two mares diagnosed with ESPA to sleep. Ultimately losing them has caused me to really sit with & unpack the way I had allowed the judging & breed standards to impair, inform, & even BECOME my own judgement, even when they didn’t make sense or clashed with something I knew wasn’t right. I think we all need to become more honest about the root of our sports & traditions, & redefine our ideas of “correctness” not based off of historical trends but the best & most current research we have access to.

I liked Skvísa from the start because she was hypermobile & that made her talented & easy to prepare for sport. Bottom line. Hypermobility wins, the standard calls it correct & rewards it, & I followed & believed in the standard. I didn’t see her hypermobility for what it was until recently. I saw it as talent, suppleness, flexibility.

If I hadn’t bred her, she’d have lived an almost normal lifespan, which is true of many ESPA horses. She always had some sensitivity & required a lot of careful stabilizing training to stay balanced with a rider (particularly to keep her trot & avoid cross-canter), but she would have more or less been okay for the normal lifespan of a horse. Her fetlocks might have dropped in her late teens, she might have developed an unusual propensity for eye ulcers or colics or whatever but if I hadn’t - twice! - allowed her body to undergo 11 months of relaxin & weight gain followed by a year+ of pasture time afterwards, she’d have lived a more or less normal life, & I can almost guarantee she’d have retired undiagnosed & whatever eventually killed her wouldn’t have prompted us to make the connection & diagnose her.

She only got diagnosed because for whatever reason her kids expressed this hereditary disease to a much more extreme degree, & with a much faster progression. Síríus was incompatible with life because his larynx lacked integrity & stuck together when he flexed his neck, blocking his airway. His older sister, Sylgja, seemed normal at birth but presented with extreme nerve impingements as she grew, & was crippled & experiencing whole-body pain episodes by 5. I got to see her get better under my stabilizing training & then watch her completely fall apart worse than before & realize that it was my responsibility, entirely, from her conception right down to the bitter, early end.

What happened to these horses is 100% my responsibility & my fault, the result of choices I made. But I made those choices based on the education I received regarding what “correctness” is & looks like - a standard I was then very heavily reinforced for riding & training towards.

Since my mares’ deaths, I’ve learned about enough other Icelandic horses with this disease, & talked to enough people who fully don’t care & have no intention to change anything that I’ve all but completely removed myself from the breed community. I won’t be told this was an isolated or unlucky problem for me specifically when I know that I’m not alone. I won’t continue to use language that dances around what we’re doing when we endlessly rehab the same problems over & over again - horses losing trot, losing canter, getting pacey, crests falling over, etc etc etc. I can’t see the sense in continuing to chase an “outline” that requires inappropriate poll/AO compression & a degree of leg action that does not make sense to the animal’s anatomy, with no research to support these practices and so MUCH research indicating that this runs counter to welfare, while mindlessly parroting the standards & citing them as the reason why X hypermobile hyperflexed example is “correct.” It’s a feedback loop. We’re saying that the horse is correct if he scores high, but he scores high because he’s correct.

It makes no sense. It’s rooted in nothing. The standard was written to fit the trends - it’s not as if science informed the standard & THEN the sport followed. No! The sport came first. That’s true of Icelandic horses, true of saddleseat, Tennessee walkers, hell - it’s true of competitive dressage. Honestly? It’s true of classical dressage, too! We are riding to standards set by a bunch of dudes from a very long time ago based off of what they thought 1. Looked cool & 2. Felt cool to ride, with NONE of the knowledge we currently have about training science, biomechanics, equine behavior, etc. As recently as the 1970s, scientists were still claiming animals couldn’t feel pain. Think about how that mentality informed horse training!!

We retrofitted rules to match & reward what was already winning, in these early iterations of sport. We continue to do mental & linguistic gymnastics to maintain this status quo with every new study that emerges. We know SO MUCH MORE now. We have progressed rapidly in the last century, last 50 years especially. Equestrian sports NEED an update. The onus can’t just be on the riders to find ways to meet the standards using better, more evidence-based techniques. The sport standards themselves have to change to fit what we KNOW now.

Anyway. Not all hypermobility is ESPA, obviously, and many ESPA horses can live long, relatively okay lives with careful management - if they’re diagnosed and the owners know & can stop riding them & certainly not breed them. It’s worth learning how to manage hypermobility, & how to use certain training techniques to help stabilize hypermobile horses, because the world is now absolutely freaking flooded with them. But until we stop rewarding it so heavily, we won’t stop selecting for it, & as I learned the hard way - when you’re breeding hypermobile animals, you can’t control how that hypermobility expresses itself down the line. AND - ESPA isn’t the only disease or injury associated with selecting for hypermobility.

Bottom line: No horse deserves what happened to Sylgja, in particular. She suffered, and longer than she should have because it took me so long to figure out what was wrong.

Because of this experience with them, my life looks completely different than it did a year ago, & in my opinion every single change is very much for the better. Identifying and learning to manage my own hypermobility & connective tissue weirdness has been a piece of that puzzle. I owe very much to those mares, but that is not what horses are here for. They do not exist to suffer so that we can learn about ourselves.

I considered what it would look like to step away from horsekeeping entirely, & in the heaviest months of grief that felt extremely attractive. But where I landed is to recommit myself to understanding their minds & bodies, be a student again (the trauma-informed certification being the first step of that!) & reconnect with my own horses more as pets, & less through sport. Beyond that, I really can’t say what my future with horses holds.

Right now I’m focusing on healing & supporting my own body, & building up other areas of my life. My own horses are not in the back seat, but they’re on this journey alongside me, rather than BEING my journey. I think it’s the amount of distance & clarity I need from the various pressures & stressors of The Sport to avoid falling back into the cycles that blinded me to Skvísa’s dysfunction to begin with.

I hope that when all is said & done, I emerge from all this grief & shifting to find that I am a better horseman than I was when they left me. Time will tell.

But I can’t let a year go by without acknowledging it. They died about a year ago. It was the worst experience of my life, from Síríus’ birth to Sylgja & Skvísa’s last breaths. I miss them daily. I feel the weight of my responsibility for them & their pain always, & I always will.

And if I haven’t said it publicly, I am so, so sorry for what happened to them.

[vampiresconce]

for @bsd-disability-week-2024

prompts: hypermobility

dazai with hEDS is something so important to me actually because before i got actual braces for my hands i literally looked like him

[john4the4leper]

🌀 Intro post 🌀

🪲Hello! You can call me antlers, Mischa, jonah, Toshek, or Moth.🪲

My pronouns are He/They 🌀 I’m a transmasc demiboy 🌀

I have adhd, gad, dysthymia, and have recently been diagnosed with hyper mobile spectrum disorder (:

👁️Interests👁️

The Magnus archives, Creepypastas, NBC Hannibal, activism, Zelda, Supernatural, alternative stuff, poetry, Marble Hornets,and much more :3 I’m a big research nerd 0-0

🪲interact if you:

Are a therian,would be considered a “weird queer”,love crafts,love internet horror and spooky stuff,use “creepy” xenogenders,love talking about NBC Hannibal,love yaelokre,like analog horror and ARGs,love storytelling/folklore,are a cryptid,are pagan,are dealing with trauma or mental illness,and in general if you are a neurodivergent queer <3

🪰DNI:

Maps/pedos,pro Israel,TERFs,sex blogs,racists,ableist,queerphobic,or generally ppl who are assholes for the wrong reasons :3

[snakegentleman]

Hypermobile/hEDS people are being failed so hard by the medical system. I am doing an online program* right now for EDS treatment, and in one of the lessons, the doctor said that it takes people an average of 14 years to be diagnosed, and for a good chuck it can be upwards of 20-30 years, especially if you start seeking it out as an adult woman specifically.

It becomes this collective traumatizing experience that makes seeking treatment after getting diagnosed even harder. Most people average 8 PTs before they find someone who will actually be able to work with them effectively. Personally, I can't even watch these lessons w/o crying because they are actually understanding the nuances of my condition and why regular PT and life is difficult w/o judgement.

*check out the eds clinic- you don't have to be diagnosed, and they take HSA (it is expensive though)

[philologique]

this one is my favorite ahsdjsfhkj

[dykebluejay]

EDS/HSDs seem pretty common on here i wanna know how many of us have fucky joints

[duality-disability]

Developments in hereditary factors for our medical shit:

Our bio mother, adoptive mother (bio grandmother), and older sister (bio aunt). All have hypermobility. And appearently dislocate the ball joints of their hips regularly

Like. They dislocate shit enough to bond over the pain of the experience and how often it happens. And the struggles of putting the joint back into place.

Yall

[batmanego]

i officially have a diagnosis!!!! :DDDD

[marmotsomsierost]

Taking bets on whether the podiatrist looks at my feet and goes 'what the fuck, bro, get out of my office' when i complain about the range of motion loss because so far every md or pt has gone 'what, it's fine, that's normal' like okay. Sure. It doesn't bother me walking or on stairs but i can't stay on tiptoes for any length of time because my right foot is nice and stable and stacked in line and my left foot can't get there. I used to be able to force it into position and now i can't even do that. It's not normal *for me* and i don't like it.

And if the answer is hey you're 40 sucks to suck then i'll be sad about it and do what i can to at least maintain what i still have, but if the answer is something that might have been able to be addressed years ago when i started having problems i'm gonna be mad about it.

[consider-your-potatoes-mashed]

Pretty sure I subluxed my hip in my sleep last night so we’re having a “fun” (not really) time out here

[ofcowardiceandkings]

sent email about helf updates to work HR, hopefully shit goes alright

[mewos-laptop]

Hypermobile arms mood rn: one of my shoulders is dropping out of its socket more than the other and I do not like how unequal my body feels rn !!!!

It's probably from the sublocation that happened last summer now that I think abt it

Here's to me sublocating my left arm this pride to that way my body is equally droopy /silly

[dabeth-is-dead]

Question mainly for autistics but open to all:

[ratcandy]

only a few hours into that pencil holding poll and I have learned some fascinating things such as

Apparently everyone was taught something different as to what the correct method is, which is crazy

Index grip seems show up with us “double-jointed”/hypermobile folk a bit and I’m wondering why that is

Holding a pencil totally wrong was not nearly as much of a shared experience as I thought it’d be fnrNFKDNFJG. At least so far. Wym the majority can hold a pencil just fine. Unbelievably unfair

[autisticlee]

having some sort of chronic pain and tiredness issue and joint problems and whatnot but not knowing exactly what the problem is is really good at leading you feeling like you're faking it or making a big deal out of nothing or making it up. especially if there's a good day where it's not as bad and you can walk straight without limping for the first time in a year. but then you can wake up the next day and can barely walk and wonder why you can't just walk normal. it's hard to not guilt trip yourself into dealing with pain by trying to ignore it and force yourself to walk "normal" all the time