Sex and disability – a taboo subject?

Sexuality is an issue that affects everyone. The World Health Organization describes it as “a central aspect of being human”.

This influences so many areas of everyday life. It’s not just relationships and intimacy, but self-esteem, body image and personal identity.

We are surrounded by images of sex, yet it seems to be hard for people to talk about on a practical level. Not to mention that being constantly bombarded with ‘perfect’ sexy ideals can make even the most confident of us feel lacking in some way. (I mean, who hasn’t secretly been a bit sad to look in the mirror and see that they don’t actually look like Beyoncé? OK, I really hope that’s not just me…)

For people with a disability or long-term condition, these feelings can be amplified. Cultural stereotypes of disabled people often don’t help. Think about the fact that disabled-access rooms in hotels often only have single or twin beds (implying that disabled people don’t have sex?) or the titles of TV programmes like The Undateables (nobody wants to go out with a disabled person?) – and it can be hard to look beyond the message that disabled equals asexual.

Of course, this is not at all true. Physical symptoms and their knock-on effects on self-esteem and body image can have a huge impact. But this does not mean that living with an illness or disability means you don’t have (or want to have) a sex life. It does mean that there are issues that need to be thought about, and maybe different tips and techniques that might help.

In a condition like MS, up to two-thirds of people suffer with sexual problems – but only 10% can summon up the courage to speak to a healthcare professional about it. Let’s face it, none of us really likes discussing our sex problems (probably because in real life they’re not usually as glamorous as the ones they gossip about in Sex and the City).

A new guide aims to tackle talking about this. Advice on practical stuff like different positions, or having sex at different times of day to combat problems with fatigue, can really make a difference. Just as important – cheesy as it might sound – we all just like to know that we’re not alone. That whole ‘a problem shared…’ thing is never truer than when we’re talking about sex. (I mean, so I’ve heard, asking for a friend, etc…)

Usually once these things get discussed out in the open, we all realise that everyone else has been there, and there’s really no such thing as ‘normal’. But people suffering in silence adds to the emotional pressures – often at a time when they already have more than enough to deal with.

Around a third of people with MS go through relationship breakdown caused by the pressures their illness puts on them, their partner and family. Relationships can also be an issue for single people, with worries about dating and meeting someone new after their diagnosis.

Although (obviously) it’s not only young people who are having sex, MS is most likely to be diagnosed in young people – under the age of 30 – which does create extra issues. It means that people are likely to be diagnosed when they are at the peak of sexual activity. But as well as the practicalities of sex, this often means the news hits at a point in their life when there are other considerations, like dating or deciding whether to have children.

All of this stuff is so important, it can’t just be ignored. Although they may be embarrassed to open up the conversation, studies show that people want to be asked about this aspect of their life.

As the World Health Organization says, sexuality is an integral part of health and wellbeing. So, when it comes to illness and disability, nurses are in the ideal position to speak to their patients about sex. They tend to have a personal relationship with their patients and can provide invaluable support in all sorts of ways. With the right approach, it makes perfect sense for them to bring up the issue of sex in a matter-of-fact way.

A group of MS nurses have developed the new guide, MS, Sex, Sexuality and Intimacy, which aims to provide fellow nurses with help in broaching the subject with their patients.

Even if it’s just as simple as asking the right questions so that people can discuss the matter as much or as little as they want, the main thing is never to assume that people are not having sex.

Lesley Betts, who has MS and uses a wheelchair, is the model on the cover of the guide, and she says: “I’m 100% behind the idea of promoting disabled people as ordinary, sexy, passionate beings.”

At the end of the day, simplistic as it sounds, it’s “ordinary” that is the key. Whatever our issues, we’re all basically the same.

We all have our own weird hang-ups, and no matter how ‘serious’ they are in the grand scheme of things, they affect us all. Although disability and conditions like MS make sexual problems much more likely, it’s helpful to remember that sexual issues can affect everyone and are pretty common in the general population. Does anyone ever actually feel like that sexy ideal we see in adverts and music videos? I very much doubt it.

As Tolstoy famously – if slightly depressingly – said: “Man survives earthquakes, experiences the horrors of illness, and all of the tortures of the soul. But the most tormenting tragedy of all time is, and will be, the tragedy of the bedroom.”

The full guide MS, Sex, Sexuality and Intimacy: A Consensus Guide for Healthcare Professionals by Healthcare Professionals is available as an interactive PDF from the MS Today Clinical Community:

Published on: November 10, 2014