RESOURCE CHARACTERS WRITING Writing Disabled Characters (Ehlers-Danlos Syndrome)

[Cricket]

First things first, EDS is a group of genetic disorders that effect the joints, skin, cartilage, veins, and arteries. It's like the opposite of rheumatoid arthritis, instead of everything being too painfully tight, everything is too painfully loose (sometimes referred to as a hypermobility disorder). We'll get into what that would look and feel like to a character here in a bit.

Good morning, everyone! If you're here you're writing a character with Ehelers-Danlos Syndrome (EDS), or you're just curious about what the heck EDS is and why I'm writing about it. Either way, welcome!

First just a disclaimer here, what I write here is based on my personal experiences with EDS, and it's not going to be the same for everyone. This is me taking advantage of the platform to ramble, since my autistic ass made EDS my special interest when I got diagnosed and read about nothing else for months. Now I'm going to infodump. You're welcome

What exactly is EDS anyway?

EDS is a group of genetic disorders that effect the joints, skin, cartilage, veins, and arteries. It's like the opposite of rheumatoid arthritis, instead of everything being too painfully tight, everything is too painfully loose (sometimes referred to as a hypermobility disorder). We'll get into what that would look and feel like to a character here in a bit. A character with EDS would use a variety of tools and resources to help them cope with day to day life, and likely seeing a handful of different medical professionals/doctors as well.

What would a character with EDS use in their day to day life?

Before all else, remember that EDS and the affect it has on the body fluctuates day to day! Some days are really good, and your character would be able to walk or move without much pain at all. Other days, the pain can be debilitating, and that is when more assistance would be needed. It would also depend on what part of the body your character's pain is. With EDS it's not constant, and it's not everywhere in most cases. As an example, in my case it's my hips, shoulders, and hands.

There's a lot of different tools that a character with EDS may use to help them with their pain, and what they use may change day to do. On a good day, they may use a cane or rollator! A rollator is like a walker, but with four wheels instead of just two. It also has a seat built in so that the patient can sit when needed in case of pain or a jump in heart rate.

On a more painful day or if something is happening that require a lot of walking, they may utilize a wheelchair instead. In situations where a lot of walking is needed (traveling, conventions, malls, markets, etc.), the wheelchair would help prevent a flare-up later. They can still have their cane with them and use it to move around. Personally, I keep a collapsible cane in a bag on my wheelchair so I can get up and roam a little if I want to while using my wheelchair!

For general pain management, compression items are also used a lot! They squeeze painful areas, which helps alleviate the pain. They can be compression gloves, socks, or chest compressors. They may also use kinesiology tape. (Yes, literally the joints and muscles are taped where they're supposed to be) It's surprisingly helpful. Why fix what's not broken?

What does EDS feel like?

EDS has a handful of effects that can differ based on a few factors. Someone with EDS has softer skin than most, with a more velvety feel to it. The skin stretches more than usual, and bruises very easily. Less visibly, it also affects the way skin reacts to painful stimulus. Hard hits (punches, falls, or hitting things) isn't really different to someone who doesn't have EDS, but small irritations, like light scratches or bumps, can be a lot more painful for someone with EDS than it is for others. Getting a tattoo was like nothing for me, but lightly scraping my arm on something rough will make me cry, I swear.

When it comes to the affected joints, there's a few different ways it could present. The joints could be partially in socket, resulting in a lot of popping and rolling with movement. For me this is typically painless, though if a nerve is pinched it's suddenly very painful. It's almost like a party trick, being able to pop things in and out of socket at will. Keep in mind that the more the character does this, the more painful it becomes. When the joints start to hurt, either with normal use (like walking) or from hyperextending the joints, it's an ache in the joints similar to the muscle aches you get when you're finished with an intense workout. It can also be very sharp sudden pain, when a joint rolls out of place and snaps back in quickly, or dislocates fully and has to be put back into place.

The amount of use that it takes to cause this pain depends on the person. For me, my hips start to hurt from walking my kids to the bus stop and back, for others it can be as little as taking a flight of stairs. Flare ups are different of course, but we'll go over that soon. In day to day life, EDS can cause unexpected, sharp pain when a joint dislocates while being used. Having the hip dislocate while walking would result in very sharp pain, leaving the character unable to walk until the hip is back in place.

What does a flare-up feel like?

EDS flare-ups are a little different than other auto-immune flare-ups. It's not like being sick or physically ill. There's not a fever or other symptoms like that. Instead it's like the day to day pains get exponentially worse. Things like walking or moving around become incredibly painful, and in my case I'm wheelchair or bed ridden until it resolves. It also comes with other symptoms, such as migraines, fatigue, vertigo, or numbness. In some cases, there may also be a correlating flare of Scleritis. Scleritis is when the immune system attacks the sclera in the eyes, which makes them extremely photosensitive. Any light is excruciating.

Flare-ups can happen at random, but they can be brought on by too much activity! Refusing to use the tools and mobility aids they need or doing something they usually can't, like running, could push them into a flare-up. During a flare-up, there's a handful of was to manage pain. Pain medication, of course, but heat or electrical stimulation also help! For electrical stimulation, a transcutaneous electrical nerve stimulation (TENS) unit is used, where small sticky patches are placed on the skin and send a very small electrical signal through the muscles. It feels fuzzy, like when your leg starts to fall asleep. Heating pads, hot baths, and Epsom salts also help relieve some of the pain.

What if you need to go to the hospital?

Deciding to go to the hospital is a personal decision, and could be for pain management, due to a concerning symptom like high heart rate, or to have a joint relocated that they were unable to put back in place on their own. I dread going to the hospital, and usually only go as an absolute last measure. Pain management, heart rate, or joint relocation are considered low priority, so it's not unusual to be sitting in the waiting room for hours upon hours, or to be treated as a drug seeker instead of helped.

Rather than going to the hospital, a lot of EDS patients will schedule with a physical therapist! Physical therapists can relocate joints, realign misalignments, provide TENS unit therapy, and guide the patient through small exercises and movements that will help with the pain. Their primary care doctor will be able to prescribe pain medications for management during flare-ups, and refer to a cardiologist if frequent high heart rate becomes troublesome. EDS very often goes hand in hand with POTS, which can exacerbate heart related symptoms.

that's the end of my rambling!

At the end of the day, every person and character with EDS will have a different experience. Pain levels, where pain is, and how it presents is personal and won't be the same person to person. Despite that, a person with EDS is not weak, helpless, or unable to handle day to day life. With utilization of the tools and mobility aids available to them, they can manage their symptoms and pain levels.

I know this was basically just a long ramble (partially just pent-up ranting because if I hear 'you're too young to need that' one more time I might go on a rampage), so if you have questions that weren't answered, feel free to ask them! I'll answer as best as I can.