Unmentionables: Talking about sex in the healthcare setting

'The Sessions', in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life

‘The Sessions’, in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life just as much as the able-bodied.

Doctors, psychologists and other healthcare professionals, both in mental and physical health, are used to talking about difficult subjects. Bowel movements, terminal diagnoses, suicide and self-harm, tricky topics are a standard part of the job. Yet somehow when it comes to sex, many struggle to find the words or avoid the topic all together.

Sex, whether defined by sexual acts, more generally as intimacy or in many other ways, is an important human need. It contributes highly to individuals’ quality of life. On Maslow’s famous Hierarchy of Needs it comes only after physiological and safety needs in terms of importance. I think I can go as far as to say that changes or difficulties relating to sex are common to the majority both physical and mental health problems, whether they relate directly to the symptoms (e.g. impact of pain and limb weakness on sex positions, hypersexuality in mania) or are secondary to medication used to treat the problem or further consequences (such as impact of taking on a sick/carer role, self-consciousness relating to skin conditions). Anti-depressants are very widely prescribed, yet often information on the (common) sexual side-effects is left to be read in the small print. I’m reminded of a quote from Ben Goldacre on SSRIs,

“ I’m trying to phrase this as neutrally as possible, I really enjoy the sensation of orgasm. It’s important to me, and everything I experience in the world tells me that this sensation is important to other people too. Wars have been fought, essentially, for the sensation of orgasm.”

Stroke for example, is a condition where sexual dysfunction has been well documented. Yet in research speaking to rehab staff, they rarely brought the topic up with clients and on the occasion when it was brought up, staff often felt embarrassed and uninformed (McLaughlin & Cregan, 2005). Reasons given for staff not approaching the topic also included fear of upsetting clients and there has been other research suggesting that (often unconscious) stereotypes relating to sex, relationships, illness and disability, play a role in this silence. Although sex problems have been particularly highlighted in stroke, there is evidence that these staff attitudes and difficulties exist in a variety of settings and in relation to many other conditions. Whilst working in a clinic for Chronic Fatigue, I approached staff about the possibility of including sex and relationships as a topic to include in a psycho-education group, and was met with quite a dismissive response. It was too sensitive, and time was needed for other important areas. However, a friend with the condition informed me that on a service-user forum, the sections relating to questions and advice about sex were by far the most used. Service-users often have to go and seek out their own information because professionals fail to provide it.

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Knowing you, perhaps

Rules of Attraction: “What does that mean know me, know me, nobody ever knows anybody else, ever! You will never know me. ”

Rules of Attraction – “What does that mean know me, know me, nobody ever knows anybody else, ever! You will never know me. ”

The woman in front of me frowns, frustrated. “It makes me really angry, I feel like they’re not listening to me, they just don’t understand how things are for me.” We talk about the different ways she can make herself heard, express her perspective in a way that others could be receptive to. Finding a common language to share her experience, that others can translate.

But I wonder if what we’re chasing after is actually something of a myth. This idea that if we found the right words, the right time, and said it in just the other way, others would get it. They’d be able to step into our shoes, inside our skin and really see the world as we see it. The truth is that another person can’t ever truly know what it is to be you. We don’t even know if we’re all staring at the same colour ‘blue’. The same words spoken will be heard and interpreted very different by different people, depending on their own experience and stored knowledge, or how they happen to be feeling at that moment. No matter how clearly you put it, you can’t be sure of what others will take away. And someone can spend a lot of time with you, learn all your history, your interests, your little quirks and mannerisms. And then they will know an awful lot about you, but they won’t know what it’s really like, your own private, subjective experience, what it is to be you.

Like Nagel says, despite everything we know about mammal anatomy, physiology and infra-red, we don’t really know what it’s like to be a bat.

But we want to be understood. We want to be known. The imagined intimacy that comes from someone really knowing you so entirely. Total understanding. But there will always be a limit to this (or at least until we find a way of plugging in to each other’s brains). How can we tolerate this? That total understanding is a fantasy and reality others will always get it just that bit wrong? That no matter how well you know someone, there will always be a mystery there that can’t be solved.