I didn’t see it when it first came out, but there’s been a little bit of an outrage explosion in the hypermobility and Ehlers-Danlos Syndrome patient community. A petition has been launched on change.org demanding an apology from ITV show This Morning.
“There was a phone in regarding whether children should be excused from PE and whether parents should be writing them a sick note with Dr. Dawn Harper being present and answering questions. A lady called Sarah had phoned in and explained that her child has Hypermobility and comes home from school with aching and the weather affecting the child.Dr. Dawn went on to say that “Hypermobility is also known as double jointedness”
Sufferers have felt that this response is very much dismissing the often debilitating and life-altering reality of what hypermobility really can be. And it’s a lot more than ‘just’ being double jointed.
So I thought I’d share my story in the hopes of raising awareness.
My pain started when I was nine. We don’t really know why (that’s the nature of the thing, I guess) and I went from being a normal child, running around with my friends, to one that couldn’t do that because of the terrible pain that had developed, especially in my knees.
It’s actually really weird looking back on childhood videos and seeing me running and jumping. It’s something that I don’t remember at all. But what was most noticeable was the weight gain just months after the pain started.
At school, there was a constant struggle with the school nurses. I didn’t want to do P.E. because it hurt. A lot. My first memory of the trauma this caused me was being forced to run the whole-school cross country. I finished last. Crying. My P.E. teacher ran the last bit with me and everyone congratulated me on finishing. I was just the unfit girl that hated running.
But I had an invisible illness called Ehlers-Danlos Syndrome that I wasn’t diagnosed with until I was 21. Try being nine years old and suffering from extreme pain, frequent dislocations and fatigue but being told that you’re too young to be in pain and no one believing you. Because I’m short, I gained weight very quickly. Just another fat child who didn’t want to exercise. Simple.
The overriding memories of my childhood often feature me spending time in physiotherapy. I remember pushing through how unwell I felt, but not being able to go out as much as I wanted to (I felt particularly bitter about not being allowed to go on the ski trip to Canada). I remember time and time again being forced to do P.E., and notes I would take from my mum being ignored, or her being called to prove that I hadn’t forged them. Time and time again I was denied painkillers, or when I was given them, told that I was lying when I said they didn’t work.
So the dismissal on This Morning made me particularly upset. Yes, of course children are children and there will always be some who want to get out of P.E. It’s also important to note that being hypermobile doesn’t mean that you have EDS (think ballerinas/gymnasts!) But I suffered significant worsening of symptoms because I forced to exercise in a way that was damaging, as well as being constantly belittled by adults around me because I ‘didn’t look ill’.
Even now, as a patient advocate, blogger and general loud-mouth, I still find it hard for people to believe the reality of what I go through every day. So here’s how, for me, it’s more than just hypermobility (if you want to read in more detail – and trust me there’s way more – please feel free to visit my blog):
I am in pain. Every single day. In every joint in my body. It’s utterly debilitating. I can’t take medication because it doesn’t touch it.
EDS isn’t just about being hypermobile (although daily subluxations are a huge part of it). I have dysfunction of my autonomic nervous system (that thing that regulates all the unconscious processes in our body), I have multiple food sensitivities, and chronic fatigue. I have about an hour a day (on a good day) where I feel like I can function relatively normally.
I am unable to work in the jobs that I want to and am pretty much a professional invalid. I’m studying for a Masters in Law because I need to prove that I can do something with my life. My health is my full time job.
The condition is multi-systemic and complex and affects everyone differently. I am luckier than many.
I constantly run into the problem of people not believing me. I’m 27, bubbly and outgoing. I know how to behave in public. I’ve been interviewed by a number of publications and every time I can’t imagine how weird it must be for me to explain in detail just how unwell I am (my physio once said to me that I have the quality of life of someone with congestive heart failure. Others compare it to MS) when looking the way I do.
I feel like my life was taken away from me at the age of 9. So no, it’s not just being double jointed. Hypermobility can have severe and debilitating effects. Many medical professionals aren’t educated in this, and this is how, on national T.V. we can have an incident like we did yesterday. Please read and sign the petition to find out more, and raise more awareness of EDS.
This was originally written for the Huffington Post.