But the biggest blow wasn’t the diagnosis. It was what he said next. “If you do not want to cause permanent damage to your joints, you must stop heavy weight lifting and high impact exercise.” I was a fitness instructor – it was my job to teach that kind of exercise. What would I say to my manager?

Luckily my manager was understanding – she gave me low-impact classes to teach like Legs, Bums, and Tums, but I felt defeated. It was the HIIT classes and my powerlifting sessions that made me feel strong. The diagnosis brought me crashing down – I was more fragile than I’d wanted to believe.

I continued coaching for another five months but eventually, the joint pain became too much and I decided to end my dream career. By this time, I had moved back to the UK and was working at a gym in Bradford. I returned to an office job and due to the impact the situation had on my mental health, I was put on antidepressants. I hadn’t stopped going to the gym but I felt my eyes tear up when I watched other people doing the exercises I loved while I plodded along on the cross-trainer.

As I researched frantically for workouts that I could do, I came across a book called Hypermobility without Tears: Moving Pain-Free with Hypermobility and Ehlers-Danlos Syndrome. Written by Jeannie Di Bon, a movement therapist who has hypermobile Ehlers-Danlos Syndrome herself, it provides a step-by-step approach incorporating Pilates that teaches you how to stabilize and strengthen your joints and re-discover your range of movement, while overcoming your fear of pain. My fear of pain and causing further damage to my joints was what was holding me back.

I reached out to Di Bon and discovered that I was not alone in my grief. “Sadly, this is very common,” says Di Bon. “So many of my clients have had their lives changed as a result of an accident, trauma, stress, or viral illness. This seems to trigger the symptoms of hypermobility spectrum disorders such as pain, fatigue, and brain fog. To go with that is a big sense of loss – loss of the life that used to be. People were fit, running marathons, hiking, working full time, and suddenly that seems impossible. I’ve had so many people in tears because of this grief, so mental health can be impacted.”

Ehlers Danlos Syndrome: "How I redefined strength for myself after my diagnosis"