Into the Maelstrom

My diagnosis story. Let's get this out of the way...

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Dear readers,

I never used to like starting my story with ‘my name’s Rebecca and I have Ehlers-Danlos Syndrome.’ It made me feel uncomfortable, in the early days of my illness. I wanted to hide my condition away and start my life story with something less painful.

But I couldn’t.

My condition began to seep into every aspect of my life, and built who I am as a person. Every negative experience I had in those early days shaped who I’d become as an adult, and so now I can’t ever separate my condition from my life story.

I want to write about my career, my life in the city and my love of 1950s fashion- but I want to do so with a purpose. That purpose is to show that people with chronic illnesses can live full, exciting lives.

If you’ve read the ‘about’ section or seen the tagline for this blog, you’ll know that chronic illness is not the exclusive focus of my writing. I want to write about my career, my life in the city and my love of 1950s fashion- but I want to do so with a purpose. That purpose is to show that people with chronic illnesses can live full, exciting lives. My illness touches everything I do, but that isn’t necessarily a negative thing. In some ways, it’s had an astoundingly positive influence on my life.

So now, at the age of 24, I am writing my story exactly the way I want, beginning with this.

My name is Rebecca and I have Ehlers-Danlos Syndrome.

It all started when I was around 14. While my friends started getting boobs, hips and chest hair, I started to notice weird pains, and symptoms I had never experienced before. My joints began to ache, for no reason at all. With little to go on, the doctors diagnosed me with juvenile arthritis. I was given strong painkillers, some anti-inflammatories and the vague promise that I might grow out of it.

Cut to a year or so later. Now I’m 17, sitting in the back of a teacher’s car, being driven home early from a debating competition. I feel sick. My head’s spinning. When I get to A&E, the doctors suggest that my anti-inflammatories might be causing my persistent nausea. They certainly haven’t been helping with my joint pain.

Finally, my rheumatologist came to the conclusion that I didn’t have an inflammatory condition. She asked me to perform a few stretches for her, to bend my little finger and extend my knees backwards. It was only then that it was discovered that my joints were too flexible for their own good, and that was what was causing my pain and mobility problems. I went home with a diagnosis I’d never heard of before; Ehlers-Danlos Syndrome.

I called this first post ‘Into the Maelstrom’ because that is exactly what the news felt like. I was terrified. I felt lost. I can’t really capture in words how scary and lonely those first 2 years were after my diagnosis. While my friends’ first worry was what to wear to prom, mine was ‘will I dislocate a joint on the dancefloor?’ ‘Will I ever be able to live by myself?’ ‘Will I even be able to walk unaided ever again?’

It was a really frightening time, but I want to place emphasis on the fact that I made it out of the maelstrom. Now I’m 24, with a job and a flat of my own. I’ve done many of the things I once thought impossible. I held on tight, and eventually the waves began to calm around me. The howling wind slowed. Now, the sun is up.

If you’re a young person who’s been diagnosed with an illness you don’t understand, or you’re experiencing weird symptoms and nobody can tell you what’s going on, I want you to know that it gets better. Your illness might not- let’s be real here. But your life can, if you put out your sails and learn how to move with the storm.

Thanks for reading,

Rebecca