Living with brittle bones, I thought sex would break me11/26/2021
My sex education lessons took place in a room full of giggles, with condoms on bananas and stories about the dangers of drugs.
I was 15 when, during our fortnightly lessons, we learnt about different families, and how same-sex love was beautiful and normal. We learnt about everything from sexually transmitted infections, to how important trust was during intimacy and not to feel pressured into doing something that we weren’t ready for.
The teaching was thorough, but left me with one important question – will having sex break me apart because of my brittle bone syndrome?
No question seemed off-limits in those lessons, and the teachers encouraged an open dialogue.
So why did the questions that lived in my head feel unanswerable? I was scared that if I did ask, I’d be laughed at by my peers, or pitied by my teachers, or seen by the whole school as a freak.
Each lesson, lots of other queries swirled around in my head:
Can I have sex while in a wheelchair? Will I have a family? Will anyone ever find me attractive?
I could never vocalise them.
I waited to see someone like myself on a PowerPoint slide: an adult version of me in a wheelchair, with a loving partner holding her. Or maybe an entry point into the questions that were eating away at me. I never did.
I waited to be told that it would all be OK, that my insecurities were just like everyone else’s. But the slideshows on intimacy and having a relationship as a disabled person were never shown and there were no movies or TV shows about girls like me.
I felt so embarrassed and alone the moment I realised that not one of my worries was going to be addressed in the sex ed sessions. I felt invisible and out of alignment with every other girl in my class. I didn’t feel normal, or what I was told being normal meant.
But this is the effect that not being represented has: it makes you wonder if your life and your set of experiences are wrong. And they’re not.
The closest I ever got to seeing a desired disabled person on screen was in 2008 during BBC’s Britain’s Missing Top Model: a show where eight disabled women competed for a modelling contract.
But instead of feeling uplifted by the show, it had the opposite effect. During a shoot, contestants were encouraged to hide their disabilities in photographs.
The series made me feel as though being both disabled and beautiful were unattainable goals, especially in the modelling industry. I felt as though there was no ‘right’ way to fit in and look beautiful if a person was disabled.
The solution was to hide my condition as best as I could, online and offline, to avoid judgement.
At the age of 16, I hid my mobility aids in order to appear attractive. I hated photos where I was seen in a wheelchair because it made me feel out of place with everyone else, so I carefully selected Myspace pictures and did everything I could do to appear ‘normal’.
And when it came to sex, I buried my worries away and tried not to think too much about my fears. I wasn’t scared of a romantic relationship; I was a hopeless romantic as a teenager. It was the physical, sexual component that worried me, which led me not to pursue anything.
The truth was, I was terrified of having sex and hurting myself.
There is no manual on how to live with brittle bone syndrome. A huge part of it is trial and error: trying something that you want to do (if it is worth it), accepting the risk of injury, and seeing how it goes.
But I didn’t have anyone that I could ‘test’ having sex with as a teenager. I wanted to understand the ‘secret’ world of sex and why everyone was so obsessed with it. I wanted to nod my head knowingly and stake my claim to being adult-like, to being a woman, and not a school girl with a special educational needs (SEN) surrounded by over-protective adults who were worried about me injuring myself.
I hadn’t really considered what having sex actually meant: connecting with another person, being very vulnerable, and sharing an experience.
But the lack of trial and error made me feel lonely and isolated and abjectly insecure. I was convinced that no one would ever want to date me. I figured I’d spend the rest of my life alone.
How do you even broach a subject like that with someone that you are interested in? ‘I want to have sex with you, but I don’t know if I can, I’m terrified that I might break,’ is not a good conversation starter.
But in 2009, when I was 16, I went to an annual conference in London for people with my condition. By complete coincidence, there happened to be a talk for young people with brittle bone syndrome about intimacy and relationships.
It was the first year that this talk, put on by the Brittle Bone Society, was running, and it changed my life.
I sat in a room surrounded by people who looked like me. Some of the attendees were my age, others were older. Many had partners, or were married with kids. Everything I had ever dreamt of, every question I had ever had, was presented to me as possible for the first time.
And as I sat in that space, I felt myself start to unravel. I started to talk about my fears around intimacy for the first time – and I was comfortable doing so.
It’s hard to explain what it feels like to see so many people, who share the same condition as you, looking back, nodding and understanding what you’re going through.
And sure enough, my questions were answered:
‘No, you won’t break apart while having sex. Just make sure that you are communicating with your partner. This applies to any couple. If something hurts, ask them to stop.’
‘Yes, you can have sex while sat in a wheelchair. If it’s uncomfortable, why not just transfer to a bed?’
‘Yes, having a family is possible with a disability.’
The conference was life changing. It made me feel reassured about not getting hurt physically. Seeing happy couples with brittle bone syndrome also gave me hope for the future. I felt more confident about myself and my body. I came out of the conference feeling as though I could, for the first time, talk to someone I fancied and see if they felt a spark. Before, I wouldn’t have dared.
This conversation burst a bubble of shame and worry that I’d been carrying around for years. I felt more at ease.
It made me realise how important it is for sex education at school to be inclusive of disability issues nationally. And not just for my sake, but for non-disabled people, too.
To this day, I still get asked the questions that I wondered about as a teenager: ‘Can you have sex? Will I hurt you?’ And while I’m not offended by these questions (unless they come from strangers who don’t know me!), it demonstrates that we need to be having more open conversations about disability and sexual relationships.
I was lucky enough to stumble upon my education of sex that was specific to me and my condition – I don’t think anyone else should have to do the same.
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