20 Years in the Dark: My Journey to an Ehlers-Danlos Syndrome Diagnosis

I was diagnosed with Ehlers-Danlos Syndrome (EDS) just last year — but my symptoms started when I was only four. My first fainting episode happened at five, and many more followed. Still, doctors didn’t investigate further than basic vitals.

In my teens, I experienced extreme fatigue, pain, and musculoskeletal issues like foot pain and dystonia. I was sleeping 12 hours a night and still napping for four. Instead of answers, I was told it was anxiety or depression — which I didn’t have. That led to years of psychiatric meds that only caused more damage, because the root issue was physical: EDS and POTS (a related condition I also have). A little bit of ADHD played its part, which is common in EDS.

It wasn’t until I met a professor familiar with rare conditions that I was finally diagnosed. While validating, it also brought grief. I lost most of my early 20s to an undiagnosed condition. My body feels decades older than I am, and my disability is largely invisible — chronic pain, fatigue, GI issues, dysautonomia, and joint problems don’t show on the outside. It’s lonely and it’s scary. Finding Rare Disease South Africa and their support groups has changed that.

To the medical community: we need to do better. The South African medical syllabus needs stronger education around rare diseases. Early diagnosis matters. Listening to patients matters. Validating what you don’t yet understand matters.

It took 20 years to get a diagnosis. That’s 20 years of living in the dark. I hope that, by sharing my story, we can light the way for others.