Stories — Hypermobile Ehlers Danlos Syndrome RSS



"All Bodies are Good Bodies": Zoë's Body Positivity Story

I'm Zoë and I have Hypermobile Ehlers Danlos Syndrome a genetic disorder, various comorbidities and ME/CFS, which remained mainly undiagnosed until I was 19.  For about 3 years in my mid teens I became very sick and I spent my life between my bed, the children's hospital and school when I could manage it. I hid my body under a uniform of fluffy socks, leggings and a hoodie. On the worst days I often couldn't dress myself, brush my own teeth or shower, at one point I was sleeping for anything from 18 to 20 hours a day.  My faith in my body was shattered,  Hundreds of humiliating, dehumanising medical procedures made me distant from my 'meat suit', I read hundreds of...

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Where Style meets Chronic Illness

  I spent most of my twenties in pyjamas, leggings, and cosy jumpers. My hair was mostly unwashed, tied up in a bun on the top of my head, and I’d be lucky if I could wash myself properly more than once a week. Before that, I’d always been interested in vintage style and vintage fashion, but I felt so uncomfortable and insecure in my body that a handful of cute dresses were the limit of my ‘personal style’. As I got older, and my chronic illnesses took hold more and more over my life, any sense of fashion (bar a slash of red lipstick whenever I’d go out) went out the window.  It was difficult to see ‘Ill Natasha’...

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