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With Ehlers-Danlos Syndome, We Sometimes Must Create Our Own Hope


I have had some time now to come to terms with my diagnosis of hypermobile Ehlers-Danlos syndrome (EDS) and to find ways to adapt and cope with the changes and deterioration of my body.

I have been to see numerous general practitioners as well as physiotherapists and specialists throughout my journey to this point. EDS patients have to do a lot of our own research to gain a better insight into our condition. When I think about the journey I have been on, I feel the hardest part of adapting has been staying positive and hopeful about what the future holds for me. Unfortunately, this is because so many
medical professionals I have seen have tried to take away my hope. This made me realize that taking away someone’s hope is one of the cruelest acts that exists.

I don’t for a moment think this is ever done intentionally. I believe a lot of the time they are trying to make sure we are realistic and know this condition cannot be cured. What they don’t understand is we already know this. This is a detail that constantly haunts us and is a fact we don’t need to be reminded of. Just because there is no cure doesn’t mean there is no hope. I think there is always hope, no matter how bad things may appear, and crushing someone’s hope is so dangerous.

So maybe sometimes we must create our own hope. That is a shame, but we have probably been through worse. By the nature of what we have already been through, we are incredibly strong people.

We can focus on what we do have and what we can achieve. We might be very restricted physically, but we can still find a way to have a positive impact on this world. Whether that is loving those close to you with your whole heart, being kind to yourself, supporting others with the condition, or raising awareness of EDS, positivity will always radiate brighter than those who try to crush our hope.

“Pursue something so important that even if you fail, the world is better off with you having tried.” –  Tim O’Reilly

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Photo by Jose A. Thompson, via Unsplash


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