Published: 19/04/2024 Tags: Stories

If this helps just one person, it’s worth sharing

I know I am early, but May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month, a month dedicated to raising awareness for people worldwide with these complex, multisystemic conditions. I’m not one to share what’s happening in my personal life, so this has been giving me some anxiety, but if this helps just one person with similar symptoms, then it’s worth sharing what I’ve been struggling with nearly all my life.

I had a heart operation when I was 3 to fix a ‘leaky valve,’ which, unbeknownst at the time, was linked to EDS. I have always been able to bend my body/joints in ways that shouldn’t really be possible. My skin has always been unusually stretchy (my party trick, as many people know). I get something as small as a paper cut, and it takes me weeks to heal from it as my skin doesn’t heal; I have hyper-sensitivity to almost everything, chronic widespread pain, extreme fatigue, and unexplained bruising…the list is never-ending.

All of the above has resulted in what feels like a lifetime of countless appointments with specialists, all of whom diagnosed me with something that wasn’t or, in some cases, concluded that my complaints were ‘all in my head’.

The average time, from the first display of symptoms to diagnosis for people with Ehlers-Danlos syndrome is 10-12 years.

29 years after my heart operation, I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), an incurable connective tissue disorder that explained everything.

Collagen is the glue that holds your body together. This critical protein gives structure and support to connective tissues, including your skin, bones, ligaments, tendons, and the cartilage that protects your joints. My ‘glue’ doesn’t work and is extremely faulty, so it doesn’t hold my body together, which is a slight problem. I remember sitting in the geneticist’s office, on my own, after she had done a full body examination, and she just casually said, ‘Oh yes, you have EDS; here’s a leaflet; I’ll write to your GP and good luck,’ since then the only medical person who has been helpful is my physio, who has helped me massively as my muscles were all basically deteriorating after years of never being active, as my joints were doing all the moving. Apart from my physio, my cardiologist has also been helping by giving me countless monitors to wear, one of which I have worn every day for 4 months – he was able to conclude that I have POTS (this is another comorbidity of EDS & comes with all its fun quirks like fainting, not being able to regulate my body temperature, palpitations, blurred vision, brain fog to name a few…) my cardiologist was the one who got the ball rolling with my EDS diagnosis.

The display of symptoms in EDS varies so much. Today I don’t need things such as a feeding tube, a walking stick, wheelchair or any ‘major’ life accommodations. Tomorrow, that might be different. EDS is so unpredictable that my future is uncertain. My future looks nothing like I envisioned it when I was younger.

Living with an invisible illness can be lonely, frustrating, and some days sad as I process and accept my future might not necessarily look like what I’ve always wanted it to. So if any of what I have said can make one person with EDS/POTS feel seen and heard, then I have done what I set out to do, as it really shouldn’t take 29 years to be diagnosed, and EDS shouldn’t be as misunderstood by people as it currently is.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list