What is EDS? Interviewing people with Ehlers Danlos



This cover image was made by Cherish Fletcher and is called ‘Feeling of Alone’. About this, she writes: “This piece depicts emotions people with EDS live with on a daily basis. I promote EDS awareness through my art and raise funds for Ehlers Danlos Society through the proceeds of my studio shop.”
You can find more of her work here: Fine Art America / Her website / Facebook.
[Image description: A painting of a girl with zebra stripes for skin]

Article by Emily Bourne.
Featuring: Caitlin Glasgow, Maizie Dyer and Rose.

Ehlers-Danlos Syndromes, also known as EDS, are a group of rare inherited conditions that affect connective tissue. It’s important to note that connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. There are 13 types of EDS: the most common is Hypermobile EDS (hEDS), but others include classical EDS, vascular EDS and kyphoscoliotic EDS.
There are several types of EDS that can share symptoms, such as an increased range of joint movement (joint hypermobility), stretchy skin and fragile skin that breaks or bruises easily. EDS can affect each individual living with it in many different ways - it’s relatively mild for some, but symptoms can be disabling for others. Moreover, some of the rarer, more severe types of EDS can be life threatening.

For this article I’m going to speak to some of my (lovely) friends who have EDS, so that we see what it is - not just from medical knowledge on the internet, but from the people who have it themselves.

Caitlin

The type of EDS I have is hypermobility (hEDS). Hypermobility means my joints can move and bend a lot more than what most people experience. EDS is a genetic disorder which my dad has, but doesn’t experience it as severe as myself. My dad doesn't get as much pain with it as i do or any other problems. Since my diagnosis of EDS, I have realised my perceived clumsiness is actually a balance problem caused by the disorder. My muscles get weak and fail me a lot, so I fall down and need help getting up. For that reason I don’t like being by myself because I'm scared I'll be stuck on the floor.

Another symptom is that my skin is stretchy and I bruise easily. My muscles can become fatigued and my joints dislocate. I get physio to help with the pain. I got told up until I was 16 that I had growing pains. I only got diagnosed with EDS when I was in too much pain and because of my persistence in asking what was wrong.


What do you want people to know/understand about it?

People tend to think I have a dull ache kind of pain, which isn’t true. They don't really understand that when I move a joint it can feel so sharp the pain I sometimes feel like a knife is there.
Plus, since I have the hypermobility EDS, people just think I'm bendy when my muscles are trying to keep my joints from popping out, hence more pain. My pain always differs with the weather, too, so sometimes my muscles can feel tighter in the cold, making things a lot worse.
It really gets to me when people think I'm perfectly fine, like it's just a pulled muscle, because though some days I may be able to achieve all my goals, on others I just can't. I've started walking really slowly now too and I have a walking stick (it's rose gold so it's pretty!) for worse days. I wouldn't even allow myself to use it ages ago because I'm meant to be 18 not, like, 70! I think people forget how it affects social life too because I have gone from going out every weekend to I'll see you sometime this month! because I'll be catching up on the work I've missed.

I’d suffered with bad migraines for two years before a diagnosis and when I discovered its a symptom of EDS and fibro, I was so relieved - I thought I was making up my pain and migraines! It's crazy how I ended up thinking it’s all in my head since doctors would say it was little more than growing pains.

[Image description: Caitlin at the forefront of the image holding a hand up against her cheek, avoiding making eye contact with the camera. Along her arm and onto her face text says “just because I’m young doesn’t mean i’m not in pain”. Source]
Maizie

I’m diagnosed with hEDS, but they think I might have classical EDS so I’m going to have genetic testing soon. When I was young I had very painful legs, which was just put down to growing pains. Three years ago I got very ill - awful whole body pain, extreme fatigue, stomach problems and other things - so I went to my GP who sent me to a rheumatologist in Bristol. The doctor assessed my symptoms, looked at my joints and my skin. He diagnosed me with hEDS and fibromyalgia. Since then I have physically gotten worse, but I’m learning how to deal with it better!

What self-care tips would you give to someone with EDS?

  1. Baths! They are great for sitting muscles and joints, and can be even better with bath bombs or Epsom salts.
  2. Saying no is a major action of self-care. If your pain is too bad, or fatigue or anything else, say no! It might be hard, and the person might be upset but you need to do what’s best for your body!
  3. Another one would be to have snacks, drinks and meds in your room, so if you need to stay in bed, you have things you need!

Art by @floteren. You can buy this here: Source.
[Image description: Drawing of a womxn in a funky outfit, waving her arms around, with the slogan “chronically ill but still groovy’ and stars spotted about.]

Rose

When I was 16 I began to have chronic pain symptoms throughout my whole body. Over the past two years, my symptoms have spiraled out of control and left me severely disabled. My name is Rose and I have Ehlers Danlos Syndrome and an array of co-occurring conditions (such as gastroparesis, intestinal dysmotility, colonic dysmotility, POTS and fibromyalgia). My journey has been rough the past few years: I almost died from starvation in November due to all of my GI* issues taking a scary turn for the worst. I now am fed through my central line using TPN**. I am also unable to walk and both of my shoulders are permanently dislocated. Although my health is very poor, I do not let it stop me from doing what I love. My motto is ‘this isn’t forever. The wait is the hardest part but it will get better.’
I created my Instagram account, @my.eds, to spread awareness for my illnesses. Awareness for EDS is extremely important to me. The average time to be diagnosed with EDS is years upon years. Not many doctors and people in general know about this rare illness. Awareness can decrease diagnosis time and even save lives.

*GI: gastrointestinal
**TPN: Total Parenteral Nutrition is used when individuals cannot or should not get their nutrition through eating. TPN is also used when the intestines are obstructed, when the small intestine is not absorbing nutrients properly, or a gastrointestinal fistula (abnormal connection) is present.


What is something you want people to know?

“I would be hotter if I could walk.”
My clothes would look better, my body would look better, I would be more normal, strangers would see me as beautiful. All of these thoughts bounce through my head anytime I see myself in the mirror or in a picture. Our society and our media has festered and birthed these awful thoughts into the heads of all mobility-aid users at some point. And it’s disgusting. Why do I have to feel less than because I can’t walk? Why don’t I see more people like me being portrayed as sexy? Why do strangers assume I’m a sick child with no more to offer? I’m posting this to change this mentality. Not only change my thoughts but change yours as well. My name is Rose and I’m disabled. I cannot walk. I cannot eat. I cannot drink. But I CAN be beautiful. I CAN dress hot and feel hot. I CAN love my girlfriend. I CAN BE A PERSON. I want you all to post sexy pictures and show the world we’re here, and we matter. And I will continue posting things like this. We’re changing things around here. One picture at a time.
So, I want to remind everyone disabled people are hot as hell.

[Image description: Rose sat on the bed in her underwear, with her medical equipment showing and posing. The lighting is a shade of red.]

*    *    *

Resources:

Extra information:
The authors -
Emily: instagram / shop
Caitlin: instagram
Maizie: instagram
Rose: instagram
Cherish Fletcher: Fine Art America / Her website / Facebook