13 Oct 2021 Feeling Accepted With A Chronic Illness
When I attended my first EDS The Ehlers-Danlos Society conference in Las Vegas in 2017, around 50% of my clients had EDS and hypermobility with pain. I was kindly invited to speak by Lara Bloom CEO of The EDS Society. I had just released the first online hypermobility course, Strengthen Your Hypermobile Core.
I had travelled 5000 miles, didn’t really know anyone and yet I knew I wanted to be there to present my thoughts on movement therapy to the community.
Something amazing happened in those three days. I felt fully understood and accepted for the first time with a group of strangers. No one looked at me weirdly when I said about strange symptoms, I understood the perspective of everyone I spoke to, no one tried to stop you going to bed early or taking an afternoon break. There was even a rest area where people could lie down. I’d never seen that anywhere before. People were welcoming, open and empathetic. I made great friends and my world grew. It was life-changing for me.
From those days on, I knew this is where I was meant to be. My clinic practice now has a 95% focus on EDS, hypermobility and chronic pain. I wrote the book Hypermobility Without Tears and launched the biggest online movement resource, The Zebra Club. Over the pandemic, I developed my YouTube channel to give free movement education to the hypermobile community. I feel part of this community. I also teamed up with The EDS Society to create their movement resource hub, which can also be found on their YouTube channel.
I’m not saying you need to attend an EDS conference. But there will be resources, groups, communities that are there and who do understand. These can be online too – it doesn’t mean you have to travel these days. It can sometimes feel lonely, isolating and frustrating living with a chronic condition. Sometimes just having an online conversation with someone who gets it can make all the difference. There is such a sense of relief in feeling accepted and understood.
Have you found useful resources? Would you say it helps feeling part of a supported community?
Thank you for reading.