welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

When I decided to tell my teacher about my EDS diagnosis

Earlier this year, I was diagnosed with a rare connective tissue disorder called Ehlers-Danlos syndrome (EDS). Getting to the point of diagnosis has been a long and exhausting way. However, being diagnosed was an incredible relief in the first few moments. Finally, I received an official confirmation that my pain is real and that I am not making it up.

They believed me. But like with so many other diseases, getting a diagnose is not only a relief, but also a huge shock. Even if you try to prepare yourself by doing research about the disease on your own, you will never reach a level of preparation that will leave you unmoved. Only recently I came to realize that. After being diagnosed, it took some time until I felt the real shock. I started to think I wouldn’t have to have this experience because I had informed myself so well about EDS. I thought I was prepared… but I was wrong.