I’m hiding Ehlers-Danlos Syndrome

Before I share other people’s stories, I wanted to kick things off by sharing my own.

Thanks in advance for taking the time to read it!

Q: How old are you? 

The grand old age of 24.

Q: Can you tell me about your disability? 

I have something called Ehlers-Danlos Syndrome type III. EDS is caused by a fault in the genes that causes connective tissue to be weakened. It’s pretty rare with only 1 in 5,000 people having the condition. EDS has a really wide range of symptoms and each person is affected in a different way. For me personally it causes my joints to be very unstable, causing frequent dislocations (as many as 5-10 each day), chronic pain, dizziness/fainting and exhaustion.

Q: What is your typical journey like (prior to the badge)? 

Like most Londoners, I normally have to get to work for 9am which means I have to travel at the peak of rush hour. I live on the district line which very often has severe delays, leaving every train absolutely packed and really hot. I usually squeeze onto a train, mind the closing doors and hope for the best like everyone else; in the past few years I’ve lived in London I’ve only managed to get a seat during my commute a handful of times. On even rarer occasions the train will empty at Earl’s Court and I can nab a seat there, but it’s not very common.

Q: What happens if you don’t get a seat? How does this impact your day? 

On a good day if I don’t get a seat, it might mean I need to take some extra painkillers throughout the day. On a bad day, the additional 45 minutes of standing can lead to constant pain at a minimum, dislocation of my hip later in the day, and often missing the next day or two of work (or having to spend my weekend in bed). 

On one occasion – naturally we were packed like sardines in the carriage – the train suddenly made a hard stop. Everyone was jolted around and some people fell over. Unfortunately, I wasn’t able to get my arm free quick enough and I dislocated my shoulder. Luckily it went back in smoothly, but it’s a pretty horrible way to start the day.

Q: Are there any visual cues that would signal you need a seat (prior to the badge)? I.e. walking stick, crutches. How successful is this? 

Yes and no. Outwardly I look healthy, but I do have to use a walking stick often. I have a pretty bulky forearm crutch too, so it’s quite in-your-face. Some people are so lovely and give up their seat as soon as they see the walking stick, but in a busy carriage sometimes they can’t see it. I would say it helps get a seat about 50% of the time, as opposed to not having the stick.

Sadly, even with a visual cue like my walking stick, some people do their very best to avoid giving up their seat. I think the most memorable was when I was standing in front of this lady who looked at me up and down, then closed her eyes and started “snoring”. Brutal!

Q: How do you feel about the badge trial?

I have been pretty vocal on social media about needing some kind of ‘disability on board’ badge. With pregnant women and the elderly, there is an obvious visual cue that people can look for. With hidden disabilities, it’s impossible to tell and sadly walking aids aren’t enough sometimes. London’s public transport can be a crazy place, so having something that is ‘official’ and that people accept without much hesitation is a HUGE relief for me.

Something I have heard a lot is “Why don’t you just ask for a seat?” My answer to this is a challenge; every trip you make on public transport for the next week, walk up to someone and ask them for their seat. You’ll likely get a lot of people pretending they didn’t hear you, some pulling faces like you’ve insulted their grandmother, and then a handful saying yes with no qualms. Now try doing this multiple times each day – it’s exhausting.

Q: How do you feel living in London with a disability? 

London is an incredible city with endless things to do and see. When you have a disability your life is not always in your control. When the infrastructure we have in place is running smoothly London is one place that I feel you get some of that choice and control back. When it’s not running smoothly (or at all) it can suddenly feel like you’re stranded on a desert island with nothing but an oyster card.

Q: What do you think would most surprise those without a disability about the way yours affects you? 

A: The symbol for Ehlers-Danlos is a zebra, relating to the medical saying “when you hear the sound of hooves, think horses, not zebras”. But sometimes those hooves are zebras! Ehlers-Danlos is quite rare, so doctors often don’t recognise they are seeing it and therefore sufferers tend to have long and difficult journeys to diagnosis. I spent almost 15 years being told by doctors that there was nothing wrong with me. Instead I was having ‘severe growing pains’ or was just ‘very flexible’. It went on for so long that I didn’t even trust myself anymore and questioned every twinge of pain or bizarre clunking in my shoulder, assuming everyone else went through it too. 

I think that may surprise people to know that I’m not actually ‘disabled’ in my head. In my mind I’m the active person I want to be, but it’s my body that has to remind me that I’m not and I do have some limitations. I think that may be the most surprising thing people don’t know about being ‘young’ and having a disability that affects you in the ways EDS does. In your twenties you are expected to work exceptionally hard, build the foundations of your career and have lots of nights out and fun along the way. In contrast, when you have EDS it’s all about nights in, trying to avoid dislocations and pain management. As like most EDS sufferers, I can definitely say my joints go out more than I do! 

I hope you found this interesting and have maybe even learned a little something after peeking into my daily commute.

Check back next week for another Q&A! I am publishing them every Friday moving forward. If you or someone you know would be interested in sharing your story, please get in touch.

Lily x


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