Published in InterAction 69, Autumn 2009
“Sex and CFS /M.E.: why bother?” asks Dr Libby Nugent, CFS/ME Service, St Bartholomew’s Hospital, London, in this frank, down-to-earth article. (Warning: contains explicit sexual language).
Sex and relationships are everywhere in the media, but the idea that people are sexual can still be looked at with embarrassment or disgust, particularly if sex is linked to health difficulties and illness.
Sex can be seen as a physical need or drive (like sleeping), a spiritual act or for reproduction. These reasons (and more) will be seen as having varying 'truth' or importance to different people.
Regardless of beliefs about why people want or need sex, we know that sex can do our minds and bodies good in a number of ways. It can relieve stress, provide physical and emotional closeness, is an opportunity for fun, can be a good workout, helps us to experience power, can influence our self-esteem, make us feel more like a woman/man, give us a confidence boost and help us sleep.
In society we have a lot of social rules and pressures about sex and relationships. These rules tell us what is 'normal' or 'OK' and what is not.
The rules each individual follows will be informed by community and culture as well as unspoken rules learned from each family.
Getting it right (performance, style, with whom, where, at what age, how often) can therefore be a source of anxiety as we inevitably associate sex with social worth and judgement.
Typically to have sex we need to 'turn the volume down' from some of the bits of our brain that encourage us to follow these social rules and others - such as hygiene and what parts of our bodies we touch. However, this bit of our brain is also influenced by worry and fear.
At the same time we allow other bits of our brain to have the 'volume turned up' from sensory information such as sight, sound, smell and touch. This leads to heightened sensations and increases opportunities to experience the pleasure of arousal.
If we have a lot of worries - whether it is paying the bills, work stress, experiences of pain, problems with our family or living with a health condition like CFS/M.E., the impact of these can be so loud they are difficult to ignore. As such our ability to be interested and enjoy sex becomes more difficult to achieve and the sensory stimulation needs to be stronger or more effective.
The consequence of this can include: lack of sexual interest; difficulty in becoming aroused; problems with maintaining an erection or muscles relaxing during penetration; experiences of pain during penetration; or difficulties with orgasm/ejaculation.
This is why doctors might ask about someone’s libido or interest in sex. If someone’s ability to enjoy sex the way they used to, or think they should, is changed this is often (although not always) a sign of high stress, worry and/or low mood and they may benefit from being able to talk about difficulties in this area.
Sex and M.E.
As M.E./CFS affects our bodies, relationships and sometimes the way we feel about ourselves, it may also affect our intimate relationships.
There is not much literature about sex and M.E./CFS but it is thought it might be quite common for people with M.E./CFS to experience difficulties with sex and relationships.
The lived experience of M.E./CFS is that of fatigue, pain, sleep disruption, ‘brain fog’, all presenting in a form that can appear invisible to wider society: all of which one would anticipate might impact on libido or how interested in sex we may feel.
As well as this some people with M.E./CFS report increased experiences of social isolation, not feeling understood/believed, losses or changes in ability to perform roles eg. difficulties in work, spouse, missed life experiences and depression.
Also, importantly, the stigma and shame people can experience from some attitudes in society about M.E./CFS comes with its own set of issues. The impact of low mood (depression) and worry (anxiety) can also result in sexual dysfunction either directly or as a side effect from medication to treat these 'mental health' issues.
Is there an answer?
This might all sound a bit overwhelming so it's good to remember people with M.E./CFS can and do have enjoyable sex - the way they like it!
Taking worry and stress out of sex by focusing on what genuinely feels enjoyable and fun, rather than what we think we ‘should’ be doing, helps increase the sensory input to our brains and this is the key.
There are many ways to be sexual and intimate (not just vigorous intercourse / penetration) such as kissing, touching, talking, texting, fantasy, oral sex, masturbation, use of toys, role play... Experimenting with what feels right for you can be an important way forward. It’s about giving yourself (and partners) permission to prioritise the sexual part of your self - and then get creative.
Sometimes by focusing on certain forms of play, such as physical contact with no genital touching, or focusing on one particular sense can be a good place to start.
For some people, if the expectation of orgasm or ‘following through’ is removed, this allows focus on enjoying what you are doing, rather than worrying about what it might lead to and subsequent consequences.
This can also help to build on your ‘repertoire’ and increase confidence. It can be a good idea to explore via the internet, library, bookshops, specialist sex shops and literature around enjoyment of sex and physical intimacy.
For some people it might be helpful to develop skills in re-establishing or developing self-esteem, identifying needs and learning how to share and negotiate these with partners.
As a final note, these suggestions are by no means comprehensive, nor will they be to everyone’s tastes or capabilities. I would suggest if you are struggling with these issues and you think an extra bit of support might be useful you can ask your GP, local genitourinary clinic or M.E./CFS service to see a sexual health psychologist or counsellor.
References for this article are available from InterAction on request.
Not tonight darling
Readers may also be interested in a previous article, Not tonight darling, I’ve got M.E., (InterAction 48, May 2004, p 35,) which is available on our website.
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