What it’s like living with Ehlers Danlos Syndrome

So recently in the news Ehlers Danlos Syndrome (EDS) has been pushed into the spotlight with celebrates such a Sia and Lena Dunham announcing that they suffer with EDS.

As a sufferer of EDS it was heartwarming to see such strong and independent women living their best lives with this evil chronic illness that people tend to just sweep under the carpet.

I don’t really like to talk about the fact that I have EDS as I’ve sort of pushed myself into denial about it my whole life accounting “I’m fine I am just like everyone else!” so what actually is it and how does it affect me?

Ehlers Danlos Syndrome (EDS) - This was two weeks after fracturing my ankle and walking around poland with it all strapped up under my socks. I was insisting I didn't need to take my crutch on holiday with me even though i really should have and needed it badly
This was two weeks after fracturing my ankle and walking around poland with it all strapped up under my socks. I was insisting I didn’t need to take my crutch on holiday with me even though i really should have and needed it badly

What is Ehlers Danlos Syndrome

So EDS is a chronic illness that you have from birth. It’s passed down genetically and is very very rare. I was tested on majorly as a child as my whole family has it and we were one of the few famalies in the UK that would agree to all the endless tests.

It means that your soft tissue does not hold your joints in place properly and you are overly bendy and suffer from dislocations very very easy. It also means you are in pain every minute of the day as your body is struggling to hold yourself together.

Diagnosing EDS

So I had symptoms of Ehlers Danlos Syndrome (EDS) my whole life and my GP had just brushed it off as growing pains and “oh she’s just bendy” when in really I was in and out of A&E at least once a month with dislocations and having to be on crutches. My GP was useless at diagnosing it and half the time would make comments like “she’s just pretending so she could use crutches for attention”. Yes I kid you not. But as a ten year old child I can officially say being on crutches is the WORST possible outcome. Other kids would make fun of you. Steal your crutches. You were different and that made you an easy target.

But when I was 13 and playing hockey at school I pushed my body a little too hard and when I was running across the pitch I ripped my lungs away from my sturnam and suffered a punctured lung. And FINALLY a kind doctor in A&E realised this 13 year old should not have been able to puncture her lung so easily and referred me for extensive testing.

Ehlers Danlos Syndrome (EDS) - Me resting my leg after walking too long and it deciding it didn't want to work anymore...
Me resting my leg after walking too long and it deciding it didn’t want to work anymore…

Heart Problems

And to top off having all the college in your body not work you are prone to having heart problems as well. I’m one of the unlucky few to have every problem you can have with Ehlers Danlos Syndrome (EDS). I have mitro valve prolapse thateans the main valve iny heart is faulty and pushed blood back through the wrong way. It gets worse as you get older and I’m bound to need heart surgery when I’m in my 40s. I also suffer from POTS which makes my heart rate rise and my blood pressure drop while standing. So if I stand up too long I get dizzy and can randomly pass out for no apparent reason. Also this is not fun in public places when I have to just sit my ass on the ground for no apparent reason as I feel like I’m going to drop. Yes I’ve done it in tesco. But no I don’t shame myself for it anymore.

These pesky heart conditions give me the lovely brain fog also. So throughout the day I get these brain fog moments where I can only describe it as this dizzy confusing state where nothing goes in and I’m kind of on basic auto pilot. It get very frustrating at work when someone’s talking to me and no matter how hard I try it’s just not going in and I look like a twat.

Bloody Crap Joints

So we already know my joints pop in and out of place. But because that happenes so often I’m not taken seriously when I visit A&E. “well if you had a dislocated hip you would be screaming in pain right now and you seem fine”, trust me it’s popped out. My pain threshold is just so high due to being in pain 24hours a day I can just compose myself very very well and brush dislocations off as inconveniences. If I’ve made the effort to come to A&E that means I tried to put it back in place like normal but couldn’t so you professionals are going to have to do it for me. Im also allergic to morphine so it’s a painkiller free relocation for this gal over here!

Barely any White Blood Cells

To top all this lovely stuff off, I also have too little white blood cells in my body. This means if someone sneases near me I’m screwed. A little cold you say? Three weeks of pure hell for me as my body can’t handle it. Tonsillitis? That’s a hospital jobby as the infection goes straight to my weak heart.

Ehlers Danlos Syndrome & Depression

No one likes to talk about the D word but imagine your body constantly breaking. Constantly being in pain. Constantly tired. With that going on every day it gets to you mentally. Most of the time I’m that person who is very bubbly and almost trying to prove to the world I’m “normal” and can do everything anyone else can do. But some days o sit there and cry my eyes out because I’m working ten times as hard to keep myself on normal level and play it cool. I will never admit I’m in pain but trust me you can see it. I limp alot and try and style it out without anyone noticing.

Ehlers Danlos Syndrome (EDS) - Broken foot
OWCH!

A few months ago I stood up and somehow managed to fracture my ankle. But me being the stubborn girl I am only wore the boot for about five days and took it of determined to walk on it. Yes it hurt. But I’d rather be in pain than have the same of being in crusted pushed on me like I did my whole childhood.

So even though my body is constantly failing me and trying to make my life awkward its always been on my forefront to keep on going! Even if it means hobbling along!

TWUSS is a PR friendly Suffolk blogger. Feel free to contact me at info@twuss.com if you would be interested in working with me.

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2 Comments

  1. February 3, 2020 / 11:53 am

    Great post, I had no idea what this was. Sounds miserable but good on you for staying positive

  2. Zoe Saunders
    February 3, 2020 / 2:17 pm

    I’ve never heard of this before but you would have never know you suffered from it! You hide it well! Keep doing what you are doing!

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