My Latest Project – Raising Awareness of Hypermobility

I’ve always been one for projects, most of them seem to involve writing. I had a project to write a novel, and I’ve accomplished that twice over with the NaNoWriMo challenge. I still want to write, but I have found something that I really want to make a difference with. I have no idea how I’ll accomplish it, but I really want to produce some lengthy piece of writing, perhaps some sort of novel if I figure out how to go about doing it, about the trials and tribulations of hypermobility and what it is like to have it. I have met so many wonderful people who suffer from the disease, and yet awareness of it is so painfully low. It is my mission to change that.

I don’t know how to turn this desire for awareness into an extended piece of writing or a potential book, but I have had an idea that I think could work. One person’s story of hypermobility could not fill a book, but if the stories of many adorned the pages of a book, people could develop a genuine understanding of the condition and those who suffer from it. So, if you are a HMS sufferer, I would love to hear your story and make it part of my project.

This idea sort of started in my mind when I was having a particularly frustrating day. I felt as if people were sceptical of my condition and didn’t think I was suffering. So in my frustration, I wrote this.

‘You don’t look you’re suffering.’

Five words which, one by one, chip away at my self-control and carefully composed persona until I snap with all the anger I’ve been hiding.

Suffering is not something that presents itself to people: it doesn’t wave outrageously to others saying ‘hey look! Here comes a person who’s suffering!’ We don’t wear t-shirts that say ‘Suffering’; we don’t have signs on our foreheads that convey to you what goes on inside our bodies.

Just because I don’t look sick doesn’t mean that I am healthy. Just because I’m not in a wheelchair, on crutches or losing my hair does not mean I’m not fighting an internal battle.

I’m a hypermobility sufferer. Don’t know what it is? Most don’t. In short, it’s a condition where the tissues that connect your joints aren’t all that good at connecting. So you’re naturally bendy. Reckon that’s good? Think again. Imagine not knowing the limits of your joints, imagine the pain, imagine how easy it can be to dislocate or partially dislocate a joint.

It’s a bit like the worst workout of your life, magnified tenfold to create exhaustion akin to nothing you’ve ever seen or felt before. And visualise for a second, this pain that resists most pain medication. Think of it as the worst headache of your life which paracetamol just won’t cure. It follows you around, like a spectre it haunts you. A malevolent presence that never leaves, to some degree it’s always there.

I find myself increasingly tiring of being told I don’t look sick and I don’t look like I’m suffering. I find myself wanting to invent an empathy machine, where someone can truly feel your pain before they reach for a judgement with their insensitive strangling hands.

And so this story is one of my own reality, where I attempt with all that I possess to deepen your understanding and change your mind. Hopefully in the end, you will begin to comprehend that people hide behind many masks, and just because they hide, it does not mean that they are not suffering.

My name is Ellis Spicer, and I refuse to remain silent.

So this is an appeal to anyone who suffers from hypermobility. I would love for you to get involved in my project, send me your story and pray that we can make a difference 🙂 This could serve as a manual for new sufferers, ways of coping, tips and tricks, it could serve as a reminder that there are others who share your pain, and it sends a clear message to all that awareness needs to be raised 🙂

I have set up an email account thehypermobilityproject@hotmail.co.uk, so if you are a sufferer, I’d love it if you could email me your story. I think it would be so valuable to have so many stories all together in one place. It can be as long or as short as you like, don’t hold back and be honest.

Some questions to consider:

• What were your original symptoms?
• Were you diagnosed with something else at first?
• How have the NHS treated you?
• How long did it take you to be diagnosed?
• How has your condition been received by friends/family/work?
• How do you think awareness could be raised of HMS?
• How has having HMS affected you? In any way
• How helpful have you found support groups and forums?
• How do you manage your HMS?
• What advice would you give to someone who has just been diagnosed with HMS?

xx