#manifesting. maybe ill write it maybe ill hope someone else does and link me and ill draw about it | Explore Tumblr Posts and Blogs

cuttlefishkitch · 4 years

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hello! i haven't talked to you before, but ron said that i could ask you for some advice on writing eds? (i'd like to know things to avoid/common things that could come up in everyday life that would be good to mention/the sort of aids and stuff they'd have maybe?/anything else you think is relevant)

Hi! Sorry this took so long, a combination of ADHD and chronic pain slowed me way the fuck down. Thank you for being patient!

EDIT: WEIRD HEEL THINGS I FORGOT!!

So, before I get into this I should probably say I technically haven’t been diagnosed with Ehlers Danlos Syndrome (EDS for anyone reading) because it’s one of those syndromes that takes forever to get diagnosed with (it took a friend of mine’s mother over 30 years to get dxed). Many doctors, and everyone I know who does have EDS agree with me that it’s probably what causes my chronic joint pain and some of my other chronic issues. But just because three separate doctors have said “Yeah Probably” doesn’t mean I’m diagnosed!! Only a geneticist can do that!! And they had two-three year waitlists BEFORE the apocalypse happened.

I am diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Small Fiber Neuropathy, and potentially misdiagnosed with Fibromyalgia (once I get properly tested for EDS I might get undiagnosed with this because I don’t have most of the main symptoms of Fibro, but I got diagnosed with it anyway because it’s what doctors misDX you with when they don’t know what’s wrong with you and don’t want to do more tests).

All that said, I’ve done a lot of research about EDS (mainly because it’s the only thing that explains all my symptoms since doctors seem incapable of doing so), and know a few people who have either confirmed or suspected EDS, so I’ll link to some stuff, talk about the symptoms that often come with EDS, explain how the symptoms I have affect me, because just because someone’s not diagnosed doesn’t mean they aren’t having symptoms, and probs elaborate a bit about writing physical disabilities and chronic pain in general because it’s super important to me!

So RESOURCES aka how to make sure your post never sees the light of day because you’re linking things and tumblr hates it when people give other people information!!

Youtubers! If you want to know about the day to day of living with EDS or any disability or chronic illness I super suggest finding a youtuber that makes videos about their life. My EDS favorites are

Jessica Kellgren-Fozard

Annie Elainey

Amy Lee Fisher

Websites! If you’re asking random folks on tumblr I’m assuming (and hoping) you’ve already done the basic WebMD google searches and looked over the seemingly ridiculous lists of symptoms and related conditions, so here are a few websites that are made more for people than for doctors.

The Ehlers Danlos Society

OhTWIST (That’s Why I’m So Tired)

ChronicPainPartners (the fact that they have an entire section of articles called “Dealing with Doctors” should really tell you something)

Books! If you feel like doing actual reading! I suggest reading books written by people with Ehlers Danlos, to get a feel for how they portray themselves. I’m not saying steal, but it’s probably a good point of comparison to see how your portrayal feels. (haven’t actually read these b/c my ADHD doesn’t let me read)

Ria Ruse by Morgan S. Ray (a superhero book with a disabled super MC!!)

Mysteries of Maybelle by Imani Benfell (Imani is still in high school and has already written and self-published a book cause she didn’t have enough representation for herself how cool is she!!)

Bodies in Motion by Liana Brooks (tw for pregnancy problems and miscarriages in the link, because it’s a blog post talking about integrating EDS symptoms into the story without explicitly naming them as such)

OKAY, now for some rambling about EDS SYMPTOMS!!!

Ehlers Danlos is one monster of a genetic condition in complexity and variety. There are THIRTEEN different identified types of EDS, it often comes with Mast Cell Activation Syndrome (MCAS) and/or POTS, and can lead to various other conditions like gastroparesis, chiari malformation, craniocervical instability, and/or bad teeth. So if you’re going to be writing a character with EDS consider what other comorbid conditions they might also have. I’m mainly going to be talking about Hypermobile EDS (hEDS) because it’s what I probably have and what I’m most familiar with. That said there is a lot of overlap in symptoms with the other varieties.

I started typing this section and realized I was going to have to break it down even more so we’re going to talk about Chronic Pain, Unstable Joints (Dislocations and Subluxations), Skin Things, Mobility Issues, and Other Weird Shit and how those things get addressed separately.

Gonna get the Other Weird Shit out of the way first. Because EDS is a malfunction of connective tissue it can fuck up all sorts of random things. For instance, I and many other people w/ hEDS have trouble swallowing. Shit gets stuck in my throat, I sometimes choke on and have to cough up food, and pills can be hard to swallow, which sucks cause I take A Lot Of Pills. If it doesn’t cause full-on gastroparesis it can cause IBS or other digestive problems b/c the digestive tract is mostly made of connective tissue. It can potentially cause heart problems even if they aren’t as big of a risk as in some other forms of EDS. Premature osteoarthritis is common because what you need is more joint pain. And Fatigue OH BOY THE FATIGUE. And of course the headaches, can’t forget those pesky migraines can we!

AND piezogenic papules!! I completely forgot!! Piezogenic papules are little white bumps that appear when you put weight on your heel. In some people they hurt, but in others they don’t. They’re technically tiny little herniations of fat peaking through the fascia in the heel. They were added as part of the diagnostic criteria for hEDS in 2017!

Now for Skin Things cause it’s not as big a thing in hEDS as it is in other forms. Basically, in a lot of forms of EDS, the skin is extra stretchy and extra delicate. It bruises and tears easily, people with the extreme versions of this can accidentally scratch something into an open wound if they aren’t careful. My skin is pretty soft and sensitive, I def have the typical velvety skin, and as is pretty par for the course of someone with hEDS my skin is a little stretchy, and sorta delicate. I’m not as tissue-papery as some people get, but I almost always have at least one mystery bruise or scrape b/c existing is hazardous. Most of scars are also pretty normal, unlike the extremely papery and atrophic scars (though I have a few tiny acne scars that are atrophic) that are common with other kinds of hEDS. Something that I DO have is Lots of Stretch Marks, all over my thighs, and even down to my calves. Which wouldn’t be abnormal, except for the fact that I’ve never been over 145 lbs and I’ve never been pregnant. Having a lot of stretch marks or striations in the skin without due cause happens because the structure of the skin isn’t as strong as it is in people with a normal amount of connective tissue.

I don’t have to worry as much about my skin but people that do are usually very careful with adhesives because they can irritate or tear the skin, which sucks when you need a lot of bandaids cause your darn skin won’t do its job.

Now on to the meatier stuff and since I’m mostly working backward let’s do Mobility Issues!! These can happen in loads of ways, but a lot of what causes these in people with EDS are the other two things I wanna talk about. Unstable joints lead to increased risk of injury when doing stuff people with fully functioning joints can do.

For context, I’m an ambulatory wheelchair user, meaning I can walk, but a lot of the time it’s better if use a chair. Mine is mostly for my POTS symptoms, but the fact that my legs aren’t also in absolute agony is a big plus. I use a custom manual wheelchair with a SmartDrive (b/c I’m very fucking fortunate and have good insurance) whenever I leave the house and have to be “walking” for more than a few minutes at a time. I can’t fully self-propel in a manual chair because it would be damaging to the joints in my arms and hands, but the smaller chair is easier to maneuver in less than accessible spaces (like almost everywhere). There was about a month-long span where I used a very cheap and very bulky electric chair while I was waiting on the ideal set up I have now. Before that, I also briefly used, and sometimes still use, an up-right posture cane.

People with EDS have widely varying mobility issues because of how uniquely it can manifest. My cane only gave me a little help with balance because if I used it in any prolonged capacity any pain it took away from my legs was relocated to my arms, and as an artist, my arms are more important to me!

If you’re going to write a character with EDS having mobility issues as a result of their EDS the best thing to do is to narrow down their specific needs. Are their knees complete and utter garbage but their shoulders and wrists strong? Maybe they can get away with using a cane. Can they not stand for longer than 5 minutes because of the vertigo from their POTS? Maybe they need a manual wheelchair. Would propelling themself damage their back and arm joints? An electric chair might be necessary! Plenty of people with EDS use all sorts of combinations of these aides to get around their life, consider how your character’s good and bad days would be. Do they have back up plans if they overestimate themselves? There can be a lot to manage, but don’t let it scare you off! Sometimes I try and make it into a resource management game (because I’m a game designer and that’s what I do), to make evaluating my energy and mobility needs more fun!

But now let's tackle some of the reasons those mobility aides might be needed. Unstable Joints.

Ever stepped wrong and rolled your ankle? It hurts for a few steps and then kinda fixes itself, or maybe it bothers you for the rest of the day and you put it up and ice it when you get home? When I was walking around outside my house that would happen AT LEAST once a month, usually more. Some times I’m sitting wrong and when I get up my knee isn’t a knee anymore and decides to just give out from under me. My knuckles are made of unruly popcorn and they Don’t Want To Stay Home!! Oh! And my shoulder is more often out a little out of its socket than it is fully in.

Unstable joints lead to Dislocations and Subluxations of varying intensity, and some people get them more frequently than others. Some can be severe enough to necessitate hospital visits and even surgery, some subluxations are so banal (like my fUCKING SHOULDER) that you just learn to live with the pain.

If a character is going to be in high action, combat-heavy scenarios, chances are they’re going to be popping out joints left and right. Hell, depending on the severity of their joint laxity they could be doing the same sitting at a desk. Again, it’s incredibly varied. I’d suggest setting some sort of baseline for yourself, of what a character’s joints can and can’t stand up to, and maybe do some research on which joints are most likely to pop out in general (hips and shoulders are big culprits being the wacky ball and socket motherfuckers they are). Then maybe have something pop out or hold up every so often when it shouldn’t cause hey! EDS is kinda just like that! Unpredictable!

Some ways people manage joint laxity is with braces, KT tape, and physical therapy. Braces come in many different forms, since I’m currently getting pretty much no treatment for my shitty joints I use mostly compression braces made for sporty people. It really is amazing how much a bit of tight fabric can do to keep my wrist in place.

More specialized braces often have solid parts to prevent the joints from hyper-extending (bending the wrong way) and causing further damage. If you ever see someone with what looks like diamond shaped rings around a bunch of their finger joints, chances are those are Ring Splints, and are there to keep the finger shaped like a finger. I want to get my hands on some and get some on my hands Very Badly, because my fingers hyper-extend SO MUCH when I type, and it makes my hand pain way way worse.

KT tape is another thing people often use. It’s stretchy tape you put on your skin and it basically functions kinda like a second ligament as well as reinforcing the joint and keeping the bones mostly where they’re supposed to be. The problem with this is a lot of people with EDS have very sensitive and fragile skin like I mentioned before, so KT tape can cause allergic reactions, chronic skin irritation, or just straight up take the skin with it when someone goes to remove it. Hence a lot of folks are really careful with it.

Physical Therapy is kinda the best (and only) treatment for joint laxity aside from Very Invasive and sometimes Highly Experimental surgery. It focuses on strengthening the muscles around the joints so they can do the work all those bone ropes made of body glue can’t. The problem is finding a physical therapist that 1) knows what EDS even is, 2) knows you have it, and 3) knows how to treat it without doing stuff that’ll Phucking Hurt You Worse!! Because exercising wrong with EDS can do Permanent Damage!!!

Again most folks use a combination of all of these things, or have next to no access to them b/c healthcare sucks.

Anyway, on to one of my favorite topics, Chronic Pain!! One of the reasons this post took me so long!!!

Chances are if your character has chronic pain as a result of their EDS there are gonna be some things they hate, including stairs, rain, thunderstorms, stairs, hills, uneven terrain, oh and did I mention stairs??? It’s going to vary person to person, but almost everyone I’ve met with pain from EDS has complained about their knees. For me the most debilitating pain is in my fingers and wrists. They’re by far my least stable joints but I use them constantly for stuff like drawing, typing, and sewing.

Because my joint pain is so wide spread, like most people’s with hEDS, it effects every single part of my day to day life. I can’t carry a heavy ceramic plate, open a bottle, or even use my computer without pain. It’s practically impossible for me to get comfortable in any position be it sitting or laying down, and as you can imagine that makes it hard to sleep a lot of the time. Moving too much hurts, but so does sitting still. I’m constantly taking braces on and off or cracking/stretching my joints so they pop back into place and hurt less.

Also being in pain makes everything else That Much Worse. I get tired way faster than I did before my pain was this bad (I had chronic pain for a while before actually realizing it wasn’t normal to not be able to walk down the block without feeling like your foot bones are trying to escape). My sensory issues and anxiety disorder are more easily aggravated because my base level of comfort is way worse. It fucks with my depression. And OH BOY does it make my ADHD worse because being in pain is fucking distracting as hell and makes it harder to make decisions and switch tasks. Also my ADHD often makes my other symptoms worse cause I forget to take my meds, don’t drink enough water, or can’t find my fucking braces because the item eating black-hole that comes with ADHD stole them. The intersection of mental and physical disabilities is probably a rant for another time though, so back to chronic pain.

Does it suck? Yes, undoubtedly. Is this incredibly debilitating? Of course it is, I spent the last several months unable to feed myself without assistance because there was a staircase between my room and the kitchen and I could only manage to climb it once a day. Is it overwhelming? Definitely, I’ve frequently broken down crying from a combination of pain and frustration because I’m having a bad day and there’s no relief to be found. Am I able to predict when it’s going to rain with uncanny accuracy because any change in barometric pressure makes me feel like every bone in my body is trying to kill it’s neighbors? You bet your fucking ass I am!! Does it sometimes make me irritable, angry, and occasionally dismissive of when abled people get cold or a temporary injury because the stuff they’re complaining about is my life every single day and all avenues of treatment and recovery I have could take years and still not entirely solve my issues? Yeah, and while I deserve a little extra patience I also have to be sure to check myself because I don’t want to turn into someone who’s nasty to be around. Do I sometimes need to sleep for 17 hours straight because it’s raining, I have migraine, and I’m in too much pain to be conscious? Yup, sometimes a few days in a row. Does living in constant pain mean I’m unable to do all the things I want to and does that sometimes make me wanna curl up in bed and never leave? Yeah, it happens.

But! And here’s the big important but, that’s not everything! I still write, draw, and talk to my friends!! It might take me a little longer but I get there. I’m still happy and excitable and make the time to write out five page long posts about EDS because it’s something I’m passionate about! My chronic pain doesn’t stop me. I refuse to let it. I never really wanted to go mountain climbing anyway, so I’m perfectly happy being able to make it up and down the six steps in my house, even if sometimes I have to sit and bump down them on my ass, or crawl up them like a cat. Chronic pain isn’t all I am. It isn’t a fate worse than death. It isn’t the only thing your character should talk about (though I do talk about my pain a lot cause I’m a complainer about almost everything). You can have your character be hindered by their pain, realistically they would be. You can have them seek comfort, support, and relief. Other characters can commiserate and be sympathetic, but it doesn’t mean their whole life is going to be one big pity party, that would be incredibly fucking boring. I know I’d be bored out of my mind.

All that said dealing with chronic pain, especially from EDS, is Complicated. Physical Therapy is the gold standard, but like I said before it can be a long and difficult process, and isn’t always accessible. Stabilization methods like I talked about before can help prevent pain, or reduce it by keeping bones mostly where they belong. Heat and cold help joints, relax muscles, and reduce inflammation but keeping them applied is rough and the relief doesn’t always last. Doctors prescribe anti-depressants, anti-anxiety, and sometimes even anti-epileptic medication to help manage pain, but everyone’s mileage with those varies. And I’m not at all qualified to talk in-depth about narcotics or other heavy duty pain-meds, but suffice to say the war on drugs fucked shit up for people that legit need that kind of help BIG TIME.

Now for my closer/bonus rant about EDS and Disability Writing in General!

Everyone always says write what you know, so if you really want to do disabled people justice, get to know disabled people! Make friends with disabled people, get involved with advocacy groups, consume content made by disabled creators both about disability and not! Disabilities are so fucking diverse, even EDS is such a complex disorder, and comes with so many potential co-morbidities, that practically everyone with it has a unique experience. There’s no way I can fully explain everything in a tumblr post. Hell, even if I could talk to you for hours probably couldn’t give you enough info to answer all your questions (especially since I’m still in diagnosis hell :,) ), so talk to a wide range of people with EDS and other disabilities!! I know it sounds like a lot of work but trust me, disabled people are some of the strongest, raddest, coolest, people you will ever meet that it won’t feel like it.

And don’t be afraid either, the fact that EDS and other disabilities are so wildly varied means that you have a little bit of wiggle room with your character’s experience. There’s so little disability rep out their I think people are WAY to scared to try their hand at writing it. So long as your character is a fully developed person in addition to being disabled, you give some logical thought as to how it would affect their life, and you don’t make their disability the butt of any joke it isn’t difficult to avoid ableist writing. PLEASE WRITE MORE DISABLED PEOPLE AND PEOPLE WITH CHRONIC PAIN/CHRONIC ILLNESS!!

Okay that’s it, again sorry it took so long for me to get back to you! My fingers were being little pests about it, and my ADHD (which is honestly more disabling than everything else a lot of the time lmao) was being an asshole! Hope this helps, and feel free to ask me more questions if you need clarification! It might take me a bit but I do love talking about this stuff.

#neela-chaan #ehlers danlos syndrome #EDS #hEDS #hypermobile ehlers danlos #disability #writing advice #disability writing #Chronic Pain #asks #SORRY THIS TOOK SO LONG IM JUST SLOW #also i'm sorry the formatting is such a wreck #my adhd won't let me go back and fix it #and i've already spent way too much time

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