I should start this (before my mother totally loses the plot), by highlighting that I am NOT about to start chatting about my sex life. All you need to know, Mum, is that your chances of being a grandmother are not completely over. There, better now? I’ll continue.
I grew up around disabled people. My mum and my uncle were the most proximate to me, but by no means the only ones (don’t worry, I’m not going to think about or discuss their sex lives either. Ew). My parents had 4 kids, one of whom was born when I was in my early twenties. As much as I tried to convince myself that he was the result of divine conception thanks to my priestly father, I had to accept it: my parents were probably not sleeping with a wall of pillows between them.
So to me, gross as it was to think about, being my mum, disabled people having kids (and maybe even having the odd over-friendly cuddle between procreative attempts), was not alien. Far from it.
I have just bought my first walking stick. Dotty is bright, noticeable, and most importantly, not the knee brace from hell that I so hated. Fewer people ask what I’ve done to my leg (though when they do, it’s the last people you expect), and I feel I can go further and actually feel more confident. Though Dotty exudes an air of permanence, which is a tiny bit unnerving, her benefits far outweigh most of the worries, and psychologically, she’s been a huge improvement. But within a few days of Dotty’s arrival, I realised something when I walked down the road with my other half. People would look at my (admittedly eye-catching) stick, and then look not to me, but at him. Not everyone, but enough people that I started trying to deliberately catch their eye whilst discussing things that seemed clever so if they were judging me, I sounded bright. Tragic, really. It felt like they saw the stick, and immediately looked at the very able-bodied man next to me, wondering what he was doing with it’s owner.
I’m probably over-sensitive, but it’s already a touchy topic in my head. I was pretty mobile when we met. I went running and everything. He didn’t bargain for having a girlfriend who swapped stilletos for walking aids, and frankly, neither did I. I am very aware of how lucky I am to have him, and yet angry that I feel that way, because actually, it shouldn’t make any difference. To him, it doesn’t (he’s just got very good at remembering where I’ve left Dotty!). I’m the one getting sensitive on his behalf and that’s ridiculous. He’s not the one taking piles of painkillers, and he certainly isn’t a saint (though he is worryingly close at times). I’m lucky to have him altogether. My manic need to achieve everything, my stress-head tendencies and my inability to feed myself are the things that make me lucky. The fact he finds me attractive despite the walking stick should be decidedly less of an issue.
This evening, I read this (http://ind.pn/1Bu3qxo), and many of my fears were confirmed. While I’m not as disabled as many of the people they refer to, I didn’t really want to read that; ‘When a 2014 newspaper poll asked Britons if they had ever had sex with someone who had a physical disability, 44 per cent said: “No, and I don’t think I would.”‘
Ouch. I may not look disabled without the stick, but the idea that at 27 years of age, 44% of the population would not fancy a go is frankly a bit upsetting. I was teasing a friend of mine recently about his match.com technique of speed-flicking through photos before finally deciding that one person’s carefully chosen snapshot of themselves as they think they look best is worth him actually learning their name or working out that their favourite book is something more literary than the Argos catalogue. I asked him (as an illustrative point only!), whether if my profile picture on such a site contained my walking stick, he would even consider me. I respect him hugely for saying ‘no, probably not’ as a response – I would be livid if he lied to save my feelings – but I’m not going to pretend it didn’t hurt.
The Independent article also makes an important point; how should society assist people to have sexual relationships? Should society have anything to do with it? As a medic, this struck a cord. I’ve never really asked a patient how their condition effects their sex life, (and actually, no medic or therapist has ever asked me). Why? Because often, I’m embarrassed. I can perform a rectal exam on a total stranger, and yet asking whether their sex life is satisfactory is too intimate. And that’s ridiculous, because (and yes, this is coming from a Vicar’s Daughter), SEX IS IMPORTANT. We crave intimacy as human beings. Those few of us who don’t, still needed it to be even be here. Feeling attractive to other people is often a vital part of our identity and feelings of self-worth. When someone is ill, or struggling with mobility or mental health issues, if a simple intervention on our part (such as re-siting a catheter, as the article states) can enable someone to have sex, or some level of intimacy, then it is positively negligent not to act on that.
Relationships come under strain when disability rears its wonky head. The intricate balance created between two people can be turned upside down as one person feels like a burden and the other under pressure to help them. Remove their sex life too, and what hope does that couple have? Some undoubtedly manage it, but it can’t be easy. I, and no doubt many other professionals, need to be comfortable asking about sex, not only in disability, but in other forms of ill health. It’s a vital part of the job, and one that could potentially save relationships, and even lives.
So medics; ask about sex. Maybe don’t open with it(!), but don’t assume that a) everything’s fine or that b) that part of a patient’s brain magically turns off when their life changes. Even if everything is fine, by normalising asking and talking about it, you’re reinforcing a key point not only to your patient, but to society; ill and disabled people can, should, and want to have sex, just like everyone else.
Excellent blog as always Hannah.
Raises some very interesting points. I think we may be getting slightly better at asking about sex. I’ve been taught that asking men about their ability to maintain an erection is a very useful part of vascular, diabetic and cardiovascular exams (and I’ve asked, and had answers!) however…
Women have been left behind, the idea that we may have sex lives seems to be an foreign concept to most, the thought that perhaps our health might have an impact on this part of our lives.
We need to start to think about every aspect of our patients, even acknowledging that it could be an issue is a start.
So my resolution will be not to forget sex.
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