My life finally started after diagnosis

Posted November 5, 2020

Barbara sits in front of her wheelchair, with a dog sat in her wheelchair, and a horse stood on a block behind her

It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was not actually crazy like some had tried to make me feel the past years. 

I went through a hell of a wrong revalidation process which damaged my body further. I got PTSD because of the fact that no medical professional listened to or believed me, I was bed-bound for months but I got myself back into the wheelchair. Again, with no help. EDS can be a very long and lonely fight. 

There was a doctor who said that even if I did have EDS, a diagnosis won’t change anything about that. He was wrong because a correct diagnosis can change everything. I mean even if there is no cure, your life can actually start when you are diagnosed and treated in a way that you deserve, as a patient and as a human being. My life finally started after all those years, 24 years. I am seen, heard, and helped. And this is how it should be. This is why we need more awareness of all types of EDS.

But I can tell you that I learned a lot about myself in these past years. That I am strong. And strong walls shake but never collapse. EDS taught me a lot of valuable lessons. I am thankful for my fight, my medical journey because it might help to support others. This is why I share my story.

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