In researching this article, I wanted to find out roughly how many novels dealt with hypermobility. So, in a completely non-scientific manner, I googled it, and found a grand total of two. This was not an unexpected number, but still disappointing as hypermobility is extremely prevalent among children and young people. In my opinion, this only makes the need for representation in fiction that much more vital. It’s so crucial that young people (and adults!) see themselves represented in books—and represented accurately. So, in this article, I’m going to write about my hypermobility, and how it affects me and my life. I hope that detailing my experiences about this condition will inspire more authors to take up this subject.
Two years ago, I badly dislocated my knee. A child I look after sat on my knee and—bam—it went. For forty minutes I sat in a park screaming and trying to not scare the other kids I look after, until finally, my knee went back into its joint. It was horrible and scary and, to be honest, not completely unexpected.
My knee has dislocated before—in fact, it’s gone loads of times. I hop off a train, and the next second, I’m on the floor. I’m out running, and then suddenly I’m face-down in the gravel. To be honest, I didn’t think much about it, mainly because my knee usually went straight back in. I’d never even gone to a doctor about it. It was more of an inconvenience than anything. That was until that moment two years ago. I rushed straight to hospital, terrified to bend my leg just in case it went again. Finally, I was diagnosed with hypermobility.
Hypermobility syndrome is a condition that means that my joints move beyond the normal scope for joints, and my ligaments are really stretchy. Whilst this can be cool, since I’m really flexible and have loads of bendy party tricks, it also has its horrible moments. My joints are at constant risk of dislocation, which is not fun, and if I over-exert myself, or twist funny, or seriously, anything happens, I have pain in my joints. Sometimes this means I have to ice my joints, or I struggle with walking distances. Hypermobility is an integral part of me, and as an avid reader and writer, I would love to see my experiences represented more in fiction.
My hypermobility affects me almost on a daily basis. The first thing I do when I wake up is exercise. This may seem counter-productive, especially if I wake up and I’m in pain, but if I don’t exercise regularly, my hypermobility gets way worse. My muscles need to be as toned as possible in order to counteract the flexibility of my ligaments. Exercising regularly dramatically decreases the chance that one of my joints will dislocate. The type of exercise I do is also affected by my hypermobility. Contact sports and anything that involves a lot of impact is completely off the table, and I was told by my doctor that I should ever only run if my life is in danger. So I stick mainly to waking, yoga, and riding my stationary bike.
After I’m done exercising, I’ll probably have a driving lesson. Yes, I am twenty-three and still learning to drive, and hypermobility is a big reason why. Driving manual meant using my left (very bad) knee a tonne, and it was so painful I couldn’t drive longer than an hour, and would have to ice my knee for the rest of the day. I recently switched to automatic, and it has seriously changed my life. Passing my driving test seems possible for the first time.
Then comes walking. Walking to the shops, or putting the rubbish out, or just walking down the stairs is something a lot of people take for granted. It’s an ability that I know I didn’t appreciate until I lost it. After I dislocated my knee badly, it took me a year to be able to walk to the shops again. I struggled getting in and out of the bath and shower.
Another thing my hypermobility affects is plans. I can’t tell you how many great concerts, festivals, and conventions I’ve missed because I’m in pain and going would just risk more pain. It’s frustrating, and it sucks, and the only way to kind of counteract it is to spend the days leading up to a big event sitting a lot or icing my knee.
By far the worst part about my disability is the constant anxiety. It can be all-consuming. After my initial diagnosis, I couldn’t walk very far, and every time I stretched my leg or put weight on my foot, I freaked out. Every click would scare me senseless. I felt a kind of disconnect with my body—like I couldn’t trust it. It’s very, very difficult to feel confident in a body that you feel so distant from. I used to retch every time I heard or read the word “dislocated.” (Seriously, authors use that word a lot.) I couldn’t look at knees. But gradually, over many months, I began to feel better in my body. My ultimate goal was to walk without fear again. The first time I was able to lower myself in the bath without feeling horrible was amazing. Only later did I read that some scientists believe there is a link between anxiety disorders and hypermobility syndrome.
I’ve seen hypermobility called an “invisible illness,” and I agree with this definition. A lot of the time, if you see me in the street, you wouldn’t know I was disabled. It’s only if I’m wearing my leg brace, or using crutches to walk, that people start to clock me. Being invisible has both its advantages and disadvantages. I definitely have the privilege of being considered able-bodied sometimes, but on the other side there’s a lot of raised eyebrows and disbelief when I say I have hypermobility syndrome, and that is horrible. It would be great to make invisible illnesses like this a lot more visible in our society, and in our books.
It took me a long time to accept myself as a person with hypermobility syndrome. It was—and still is—hard to manage on a daily basis, but I have a great, fulfilling life. In a way, despite the physical nature of my condition, I feel stronger than the person I was before my diagnosis.
Hypermobility affects a pretty significant chunk of the population, and so the fact that there is only a handful of fiction books about this condition is disheartening. It’s clear that many people, including pre-diagnosis me, don’t know much about hypermobility and other “invisible illnesses.” This only makes the need for representation more necessary. It would be amazing to read more books where I, and lots of other hypermobile people are represented.
I, too, have hypermobility syndrome–undiagnosed until I was in my 50s. I grew up being called klutz by family & teachers, because I was always dislocating something when attempting sports. I thank you for your article; I’m intrigued by the idea of addressing the “invisible illness” in my fiction writing. Best hopes to you!
JHS and EDS- hypermobile type are the same thing, the new criteria + most newer literature on it expresses this. You might be curious.
I was diagnosed with hypermobility last month and I loved this article. I’ve had never listened about it until I was diagnosed. I’m an author (but I write in Portuguese) and this article give me inspiration to write about it and let more people now what it’s like.
Thank you for sharing your story. I’ve been told I have “loose joints,” and exercise helps protect them, but my condition is not nearly as bad as yours. (I can jog, for example.) I’ve never heard of this as a medical condition. I’ll think about including characters who have similar joint issues. I wouldn’t feel comfortable depicting a disability that was completely outside of my experience, but it’s easier to imagine an exaggeration of what I experience. (Isn’t that what fiction mostly is – an exaggeration of our experiences?)
Pingback: Hypermobility and Representation – Miranda Learns
I also have hypermobility. I wanted to write a review for this website, but I couldn’t, because . . . there are no books about people like us. Wish I’d thought of writing this article, lol!
I’ve never been diagnosed but when taking my son to a pyso appointment I said I don’t know where he gets it from, they asked me to hold my arms up and they said he gets it from you! I’m lucky that I don’t have it too badly but my legs used to dislocated when trying to get up out of a position I’d sat in to long. As a child I used to explain it as my legs locking.
My mum called it growing pains!
Hi! You mentioned there being a handful of fiction books about characters with hypermobility – do you have a list of the ones you’ve found?
I have hypermobile EDS and I know my kid would enjoy reading books that had characters that reminded them of me. 🙂