Chronic Pain, Disability, Disability Awareness, Ehlers-Danlos Syndrome, health

Ehlers Danlos Syndrome From an Outsider’s Perspective – Ian

Today’s guest post is one I never thought would actually happen but I am going to preface it with a warning that if you read the last instalment that my mum wrote, the answers you are about to read are nothing that you are expecting but that’s brothers for you…

Ian and I don’t really talk about my illnesses, it’s not that I hide them away from him because I certainly don’t but we have never had the kind of relationship where we talk to each other about everything.  Our relationship is mainly based on taking the mick out of our mum and arguing about which of us the cats love more, but deep down we both know that if one of us needed the other, they would be there.

Because we’ve never really spoken about my EDS together, I was really intrigued to see what he would say. Safe to say, I wasn’t quite expecting the responses I got but they are absolutely typical of Ian and his personality!

So, with that being said, enjoy reading my brother’s perspective of EDS below… 



 How do you know me? 

We share parents [I should clarify that we are full brother and sister despite the fact he’s made it sound as if we’re step siblngs…]

 Had you heard of Ehlers Danlos before I got diagnosed?


What is your understanding of what Ehlers Danlos is?

It’s a Connective Tissue Disorder

What do you think an invisible illness is?

An illness that you can’t see

 How does Ehlers Danlos affect me?

Pain, tiredness and more grumpy than usual

What is it like having a family member with Ehlers Danlos?

It is what it is

What is the hardest part of having a family member with Ehlers Danlos? Helping

 What is the best part of having a family member with Ehlers Danlos?

Car parking [By car parking he means my blue badge and the ability to park closer to the shops when he’s with me…]

 At this point in the post I would normally include a collage of photos of both of us together but Ian has banned me from posting any photo with his face in on the internet…

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