Content note: This story includes personal reflections on pregnancy risks, hereditary illness, and the emotional impact of choosing not to have children due to EDS.
Living with EDS is tough. Some days it feels like more than I can handle, but I’ve learned to hold on to the small, good things in life. My dog, Mabel, always finds a way to make me smile, and little moments of laughter with the people I love remind me there’s more to me than just my condition. Those are the things that keep me going when EDS feels overwhelming.
Behind the smiles, though, life is complicated. I had heart surgery at just 3 years old for a “leaky valve.” Nobody realised then that it was linked to my EDS.
My skin stretches and heals slowly. I bruise easily. I live with constant pain and fatigue. This year alone, I’ve been told I have problems with my lungs and oesophagus, and that my body struggles to absorb nutrients and vitamins. I’ve always been “small and skinny,” and no matter how much I eat, I can’t put on weight or muscle. People often comment — “you mustn’t eat” — and while I know they don’t always mean harm, it wears me down. There’s evidence of an overlap between EDS and autism, which my therapist believes I may have. A formal diagnosis won’t change much — I’ve always known I’m “different.” But with EDS, there always seems to be something new.
The hardest part is the invisible side of it. At my age, I’m constantly asked about kids. That one really hurts. Pregnancy could put my life at risk, and I could pass EDS on. I’d love nothing more than to be a mum — but I couldn’t bear being the reason my child was in pain every day of their life. That’s a heartbreak I carry quietly.
It took me 29 years to get my diagnosis. For decades, I was told it was “all in my head.” When I finally saw a geneticist, she handed me a leaflet and said, “good luck.” No cure. No plan. Just me, left to figure it all out.
Since then, I’ve been fortunate to find some support. My physio has helped rebuild muscles that had weakened over the years. My cardiologist diagnosed me with POTS — which for me, means fainting, palpitations, blurred vision, brain fog, and more. My body lives in constant fight-or-flight mode. It’s exhausting, stressful, and relentless.
Living with an invisible illness is lonely. People sometimes ask why I’m “so kind.” Honestly? It’s because I’ve been treated unkindly too many times by people who dismissed me because of my EDS. I don’t ever want anyone else to feel the way I’ve felt.
If sharing my story helps even one person feel seen, or if it helps someone get answers sooner than I did, then it’s worth it. It shouldn’t take 29 years to diagnose EDS. And it shouldn’t still be this misunderstood.
