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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.

2 Comments
  • Carrie Grandinetti
    Posted at 16:45h, 14 October Reply

    Yes! I’ve had this experience a few times during online group meetings & once at someone’s house that I met through a patient group. It was beautiful, surreal, and made me wonder if this is how most people feel daily – like this is what love is = being seen, understood, & accepted, without words. You & The Zebra Club give me a dose of such love with every visit to the FB page & every movement video, thank you so much. You may not be aware, but you & I have lovely conversations during your videos – I absolutely respond to all your statements & questions as if we are in the same room – that’s a total first & I adore it! Hoping to hug you IRL one day! Let’s have the next conference in San Diego!

    • Jeannie Di Bon
      Posted at 08:57h, 17 October Reply

      Thank you very much for the beautiful comment. I’m so glad to hear and yes, I hope to have a real life conversation with you one day.

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