How EDS Can Feel Like A Chain Reaction

I love it when people get in touch to let me know about what they’re experiencing. I recently got an email from Nicole to talk about what it is like to be 17 and have EDS.

There is so much pressure on people to package their suffering. I feel it myself. If people ask me how my daughter is going I have to make a quick decision. Do I tell them the truth or select a couple of positive phrases and give them the Disney version. I’m sure you know what I mean.

So THANK YOU Nicole for putting your truth out there. For people in a hard place – the truth is very helpful. Somewhere else in the world there is a lonely 17 year old with EDS saying, “Yes, I know what that feels like.” Your words will make that person feel less alone.

In the early days of editing this website I was careful to keep it positive. Over the years I have learnt that difficult and painful stories can be valuable and in their own way they can liberate us.

So Nicole, here are your precious words. Thanks for shining some light on the truth.

Hello, I’m 17 years old and I can tell you that EDS never gives you a day completely pain free. Flare ups are like a chain reaction. Once one joint starts hurting others follow until your whole body hurts and you are hard pressed to get relief. Your friends don’t understand and just think that you are a baby. How can you explain something to someone who you don’t completely understand yourself and cannot see?


On the topic of people telling it like it is – I’d also like honour a fabulous writer Stella Young. As well as having a complex medical condition Stella also had major disability. She was an activist and taught us all to think about difference in a new way.  I’d like to include her fine piece of writing –  A letter to my younger self.

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