Did you know that the zebra is often a symbol for rare chronic conditions? Medical students have been taught for years “When you hear (the ‘clip-clop-clip’ of) hoofbeats behind you, don’t expect to see a zebra.” In other words, they have been taught (rightly or wrongly) to look for the more common diagnosis, not the surprising diagnosis or the rare, unexpected conditions. That’s why the zebra is the symbol for some of these very rare conditions – including Ehlers-Danlos. “Sometimes when you hear hoofbeats, it really is a zebra.”
Ehlers-Danlos Syndromes (EDS) are a group of rare inherited conditions affecting connective tissue. There are several types of EDS. Like many long term conditions, including Parkinson’s, symptoms are wide and varied and can be mild or severe or somewhere in between. Symptoms include: chronic fatigue, an increased range of joint movement, fragile skin that breaks or bruises easily.
As Ehlers-Danlos is so complex and rare, people with this condition can spend years in limbo, waiting to be diagnosed. Which is exactly what happened to my friend Mia…
Mia spent a lot of her childhood and teenage years going backwards and forwards to various doctors for lots of different (and seemingly) separate issues. She had no idea that she had a chronic medical condition causing her various joint issues and constant exhaustion and a lack of energy. She was misdiagnosed with ME in her early 20s and was finally diagnosed with Ehlers-Danlos when she was 30.
Mia is extremely bright and intelligent but she struggled with her (at the time undiagnosed) Ehlers-Danlos symptoms through school and university. Her main symptoms are chronic fatigue and unstable joints. One of the things she found most difficult was that because she was undiagnosed, those around her at school and at university – staff and students alike – had little sympathy for her. “They probably thought I was ‘a bit soft’ and needed to pull myself together”.
I waited nine months for my Parkinson’s diagnosis and it was the longest nine months of my life, so I cannot even begin to imagine feeling so unwell for over 20 years and not knowing what was causing it. Especially as a child/teenager.
The way Mia coped with this in her younger years, was by believing that if she could just keep going and get over this hump, she would be ok later. She had a persistent sense of optimism and hope.
Hope – alongside a very deep faith – helps her to keep going through the tough times as an adult. There have been many tough times, especially during lockdown as she was on the ‘shielded’ list. Her strong faith gives her a sense of purpose.
I’ve known Mia for several years through church and what has always struck me about her is this deep faith and hope that she has. I know that she finds her condition extremely challenging at times, but she never complains and tries to focus on the positives.
Another thing Mia told me she finds helpful is giving herself time to take stock of things on a regular basis.
“I try to spend some time thinking about how am I doing, how am I managing, what could I do better, and make plans to adapt accordingly.”
On self care, she told me: “I don’t feel I am very good at self care, but this is something that I am trying to work on. I think that it is a case of trying to enjoy the things that I can and always enjoying the small things, as opposed to focusing on what I can’t do. I hope that I can plan for small blocks of time for self care to do special things in the future. A diary entry somehow makes it more likely to happen. 😊”
I think what Mia has in abundance is courage and resilience. One thing we’ve talked about is the fact that because we have experience of living with long term conditions, we’ve increased our resilience over time, so we are better able to cope with unexpected life challenges.
Thanks so much to Mia for sharing your story, and raising awareness of EDS.
For more information about EDS, visit the Ehlers-Danlos Support UK website at:
https://www.ehlers-danlos.org/
Living with Parkinson's 