"It’s reassuring to know that what you’re feeling isn’t something you’ve made up."20 May 2020
Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues.
Rio is 28 and officially got her diagnosis of hypermobile EDS at the beginning of last year. We’ve spoken to her about her journey up to this point, what it’s like living with a condition not recognised by many people, and how she manages her symptoms and flare ups.
Journey to a diagnosis
“Like many people, my diagnosis came really late. I’ve experienced dislocations all my life – I had my first big one at age of four when my child minder picked me up and my shoulder dislocated. Everyone thought I was a clumsy kid – I broke a lot of bones but looking back now, I think I had several dislocations that are most definitely linked to my condition.”
“At the age of about 17 or 18, I was getting lots of pain in my knees, which it turned out were subluxating. A subluxation is a partial dislocation, where the joint doesn’t fully come out. I started having physio and for the last ten years it’s been on and off problems with different joints at different times. I was even tested for neurological problems at one point, as I was falling over a lot, and no-one was sure why. It took years to realise that this was down to very weak ankle joints.
“Then a couple of years ago I started getting really bad gastrointestinal stuff – suddenly my body didn’t like eating certain foods, they’d give me a lot of pain, and I wouldn’t use the bathroom for days after. I’d had some mild digestion problems since my early teens, but I just thought that was the way my body was.
“Then one day, in a conversation about my digestion problems, a friend said to me ‘I don’t suppose you’re really bendy, are you?’. I’ve always been abnormally flexible, and that’s when she said I should check out EDS. I spent some time looking into it, and it was like a light-bulb - all these apparently random things, I was suddenly able to connect. I went to see my GP and from there I was referred to the hospital.
“When I was diagnosed, I was referred onto different departments – I had physical therapy referrals to build strength and stabilise all my joints and was given supports and splints for just after any dislocation. I was also referred to women’s health for bladder related stuff and sent for some heart scans. The one they are most anxious about is vascular EDS, but fortunately I have the hypermobile subtype – which I understand is often the most manageable.
The impacts of EDS
“Having been a chubby, very unsporty child, I took up dance when I was about 15 and this was really brilliant for me. It was the first time I understood that you could move for joy and that it was good for my body – a nice feeling rather than a punishment. I built up a good relationship with my body and movement through university, I felt strong and healthy and wasn’t noticing problems with my joints.
“Now I have a full-time job, and it’s harder to exercise, I’ve lost a lot of the strength I built up. It’s hard to know when something is a direct result of EDS, or when it’s just that I’m not as fit as I used to be. Some days it’s just general aches and fatigue. Aside from dislocations, my joints are generally very weak; on my worst days, I struggle to hold a knife and fork.
“When you get a formal diagnosis, it’s reassuring and encouraging to know that what you’ve been feeling isn’t something you’ve been making up all this time. I think - as is often the case with EDS - I had so many apparently unrelated symptoms, I was beginning to feel like a hypochondriac.
“My condition is hugely up and down at the moment in terms of flare ups – sometimes I struggle to hold a pen, but other days I’m pretty much fine. I’m not really sure what triggers those things, sometimes the weather makes things worse, and I find it takes longer to recover than normal.
“Two or three times a year, I’ll have a fairly major dislocation. I did my back in a few weeks ago and I had to lie in bed for a week, with my boyfriend helping me to get dressed and washed. It’s hard to manage those moments, as they often seemingly come out of nowhere.
Is it normal to get anxiety?
“I had a formal diagnosis of anxiety and mental health problems ten years before I was diagnosed with EDS. But I think many chronic conditions come with some anxiety, which seems quite rational.
“I actually knew two people who had EDS before I got diagnosed – one was as seemingly healthy as I was a few years ago, and now, she needs to use a lot of mobility aids, and is frequently in and out of hospital for surgeries and treatment. So, there is an anxiety around whether this will be me in a few years’ time. But I also have friends with EDS who live relatively unaffected lives – there’s a huge spectrum of experiences within EDS, and the unknown of course brings worry. It’s also caused me to have to unpack a lot of my own internalised ableism, which is something I’m still working through.
“If I experience any other health issues, I also worry that it’s an EDS thing. A few months ago, I convinced myself that I was becoming incontinent, which was really upsetting. My doctor was really supportive, and it turned out to just be a really bad UTI but having EDS in the background means I often worry about worst case scenarios.
Living with a chronic condition through a pandemic
“The current advice for people with hypermobile EDS is that you’re at no more risk than the rest of your age demographic, if you get coronavirus. I’m feeling quite calm about the whole thing, which I think partly comes from knowing that I’m not in a high risk category. I’ve had hospital appointments postponed indefinitely, and it’s difficult to exercise as I regularly would, but that’s true for many people.
“I live in Sheffield and work at Leeds Playhouse. I love my job, it’s a real passion of mine. I work in artist development, so organising workshops and training for writers, actors and creative people, which is amazing. Of course, not much of this can happen at the moment, so I was officially furloughed about five weeks ago. But I’m keeping myself busy doing other things at home, I do a bit of freelance work and some of that can still happen. I’m also coming towards the end of my PhD in literature at the University of Liverpool, so I’m trying to use this time to be productive in that sense.
My message for other people living with EDS is…
You have to be your own advocate. Doctors are wonderful, but in particular GPs cannot be a specialist on every condition, so if you’ve done your research (not just on Facebook or forums!) and believe you need a referral, push for it. Getting a formal diagnosis has made my conditions so much easier to manage, as well as making me feel a lot better mentally.
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