5 years of EDS

On this day five years ago I got a diagnosis of Ehlers-Danlos Syndrome. After a decade spent navigating increasingly confusing symptoms that never seemed to fit together, I thought that getting an answer would be the start of my life changing for the better. Now that I knew what was wrong with me, we would be able to figure out a treatment plan, get all my symptoms under control, and I would be free to go out and start my life with no limitations just like any other 20-year-old. I wish more than anything that I had the ability to go back and talk to that version of myself, if only just to give her a heads up of everything that was yet to come. 

I had no idea when I walked out of that appointment that my life as I knew it was over. I don’t really understand what happened. I don’t know for certain what the catalyst was, or even if there was one. There was a reason I was pursuing a diagnosis - my health had been gradually deteriorating since late 2019, but it had been bearable. I had lots of unexplained and moderately difficult symptoms which were interfering with my life but none of them really debilitated or limited me, they were just a barrier in the way of me living it to the fullest. And after so many years of not having an answer to give people when they asked about it, I desperately wanted to know why. But almost immediately following that initial diagnosis, my health took a swift and sharp decline with no sign of stopping or slowing down.

Since my diagnosis of EDS in November of 2020, I have accumulated almost thirty other diagnoses. Some were big, almost catastrophically so and some were smaller - but each one had an impact on my body, overall health and physical capacity.

I went from having visited a hospital a handful of times in my whole life to being in one multiple times a week. From not even knowing who my GP was, to having weekly meetings with them. My life flipped from that of a semi-normal 20-year-old, at the very start of their life, to one filled with waiting rooms, procedures, admissions and so much medical jargon that I am able to stand in a room of doctors, who spent 7+ years studying for a degree and understand exactly what they are saying. I learned that the medical system that we rely on, and most importantly, the professionals whom we are taught to trust above all else, are not going to help you. I learned how to fight for myself, for my care and my needs, how to ask the right questions in the right way. I learned to stand up to the people I was always taught to simply respect, how to talk back, hold fast and be firm without fear. 

I never expected that at 21 I would be forced to stop working. That I would have to give up my job, not in the name of finding something bigger and better, but because my body could no longer handle the physical demand of being on my feet for 6 hours a day. I never expected that at 22 I would lose the ability to walk, that I would be riddled with such severe pain and weakness in my legs that I could no longer put any weight on them. I never expected that by the age of 25 I would be using a wheelchair, or would be reliant on devices to keep my body working the way it should or to have to take 20+ pills multiple times a day, every day to function. I never expected to have to learn how to walk again, to still be living at home and unable to care for myself or to be having conversations with doctors about things no one should have to consider until I was in my 80’s. 

Ehlers Danlos Syndrome is so much more well known now, only five years on from when I got my diagnosis and while I am happy that it is being talked about more I still do not think enough people truly grasp how devastatingly evil this disease is. EDS is so much more than being bendy and dislocating your joints. It is a systematic failure of your entire body at a cellular level. And I don’t think people can really comprehend what that means… nearly every single thing wrong with me, each one of my thirty diagnoses has EDS as the root cause of it all. 

Connective tissue is everywhere. It's in your blood vessels, your digestive tract, your heart, your bladder, your brain, your skin, your spine and when that tissue is faulty everything starts to fall apart. My heart struggles to pump blood properly because my blood vessels won't hold the pressure they should. My digestive system is partially paralysed, all of it - all the way from my oesophagus down to my intestines. My bladder and bowel muscles don’t work, I never know when I need to pee or when my bladder is empty and I can’t empty my bladder or bowel by myself anymore I need medical devices that help me do it. I am Deaf in my left ear with my hearing in my right deteriorating because the connective tissue in my ears is slowly breaking down and giving up. My joints dislocate from the slightest of movement and sublux dozens of times a day, every day, even in my sleep. My muscles and tendons are wound impossibly tight from trying to hold together a skeleton that won't stay in place.

And the pain. God, the pain. It's everywhere, all the time. Nerve pain, muscle pain, joint pain, headaches, abdominal pain, bladder spasms… Pain that has become so constant that I can't even remember what it feels like to exist without it.

(Nerve pain from tissues pulling on nerves that shouldn't be touched. Muscle pain from the constant, desperate work of trying to stabilize joints. Headaches from my skull not sitting right on my spine. Abdominal pain that makes me afraid to eat. The bone deep, aching, fatigue that no sleep can fix. My body working ten times harder just to exist, just to sit up, just to breathe. Running out of energy by 10am because just getting dressed took everything I had and knowing that if I do something today - even something as simple as making my bed can leave me house-bound or bed-bound for days.)

This disease has stolen futures and shortened lives. EDS can be fatal, even to people who don’t have the types that are considered more dangerous, just the complications of the less severe types can be enough. Blood vessels rupture, organs fail, and systems shut down, they give up, completely exhausted. The structural failure can just become too much. And for those of us who survive, simply sit and watch our lives shrink year by year, milestone by milestone, dream by dream - trying to accept the reality that this will only ever get worse, never better.

I grieve for the person I was supposed to become, for the career I'll never have, the independence I've lost, the simple joy of making plans without wondering if my body will cooperate. I grieve for every friend who stopped inviting me, for every person who just couldn’t handle the sentence I was given. I grieve for the version of myself who thought a diagnosis meant hope.

This isn't about being flexible or quirky or interesting. This is about being 25 years old and having to plan my life around whether I'll have the energy to shower or brush my teeth. This is about watching my body deteriorate and shut down in real-time and knowing that there is no cure, that the best I can hope for is to slow down the decline. This is about existing in a constant state of crisis management, never knowing when the next system will fail. EDS is a thief. It steals your body, your independence, your future, your sense of self. And it does it while making you look normal enough that people question whether you're really that sick. It does it while doctors dismiss you, while people tell you to just exercise more or think positive or try yoga. It does it while you're fighting every single day just to be believed.

I need people to understand something, categorically: this disease is devastating. It is life-destroying. It is life-ending. When you hear Ehlers Danlos Syndrome, I need you to understand that you're hearing about a condition that affects every single moment of a person's existence, that steals their future piece by piece, that is destroying their body from the inside out. We need research. We need funding. We need doctors who actually understand. We need the world to know that this is not a quirk or a party trick or a TikTok trend - this is a disease that is literally taking lives.

Five years ago I got a diagnosis. Five years ago, I thought I was getting answers. Instead, I watched every hope I had for my future crumble while my body fell apart, taking with it every dream, every plan, every version of the life I thought I would live. Five years on I am still happy to have an answer… I’m glad I know. I just wish the answer had been different.