by Alex Cowan
I am a female wheelchair user who was diagnosed with MS in my late 20s. A few years later I got married and my partner already knew I had MS. I am very happy that he accepts my impairment particularly as he is often my carer too. We enjoy a good sex life and we continue to navigate our journey through disability and sex, both of which are a work in progress.
I give workshops and presentations/talks on the subject of relationships and disability. I would like to offer here some of my experiences on enjoying an intimate and sexual life. One of the biggest things is to discuss and talk to your partner about everything and accept the fact that your partner might want to do things on their own. They may resent their house being invaded by your carers and need to get out sometimes. That is quite natural so try and accept that. One thing I have found is that it’s best to try not to take sex too seriously nor too flippantly.
Be safe and consensual
Sex can be:
Planned and romantic
Unexpected and wild
Hot and Passionate
Cool and dreamy
Living out fantasies with role play
Talkative and experimental
Slow and sensitive
Quick and satisfying
Soft or harder sensation play
Dominant and submissive
Find out what being sexy means for you, what sex means for you and redefine it around yourself and what you are able to do. Connect, talk, touch and hug and don’t be ashamed of your feelings and desires or lack of, explore them, explore yourself.
Experiment. Don’t be afraid to fail or get it wrong. This can give you opportunities to explore and discover new things you might not have thought of before. You can still have and enjoy sex, it just might mean that you need to look at sex in a different way and maybe need a different set of tools and ways of having sex. That can be a lot of fun, challenging, and frustrating and fulfilling.
I have been sexually active as non-disabled and disabled (MS), also having friends with different impairments. As someone who tends to talk about sex, I see how many of the situations and experiences I have contain common threads. So what I’m writing may apply not just to people with MS but to people with other impairments as well as people that have no impairments.
However, with so much involvement with health professionals, I had become disconnected from my body. I found myself saying things like ‘the breast’ rather than ‘my breast’. Starting to own my body helps me feel connected and a more sexual person, which also helps me and my partner feel more like a sexual couple.
I have also found that having a disability forces you to know your body better so you can become more aware and intuitive in sex. You may also actually not want any sexual contact at all, but just intimacy and closeness and that’s fine as well. Your partner may be happy with that and masturbation, or they may take other lovers. This can be discussed. Having an open relationship can be part of any relationship and may have nothing to do with the
impairment. Sometimes people can be overwhelmed by the idea of being creative with sex because they think it’s something really complicated.
Sex can be simple; try talking with each other in ways that maybe you haven’t tried before; reading an erotic story; hugging with no clothes on; feeling each other’s skin and body with no other sexual action; watching a favourite film together. I think this helps make people feel that actually sex and intimacy is achievable and possible and pleasurable.
It’s important that sex and intimacy are consensual so make sure the other person really wants and agrees and that it is respectful and safe. Experimenting is great and if at first you don’t succeed that doesn’t mean to say that it is never going to work – try it again. Of course sometimes you can experiment and you are really clear the first time that you don’t like it and that’s fine as well, don’t do it and move on to other things.
Summary: What can help?
Shifting how you think or feel.
Redefining what sex and intimacy mean for you.
Being aware of your needs and ways to communicate them.
Remembering we all like and need different things.
Developing a new self-awareness/self acceptance about your body.
Communicating, connecting, giving each other pleasure and enjoyment.
Changing or adapting to the external world.
Adjustments like a grab rail near the bed to help positioning and moving.
Using adaptable or high-powered vibrators if your sensation is not so strong.
Using a sex swing, wedges, special cushions, vibrating glove, Easy Rider (see resources for websites that may provide these and many other options)
Adapting to major changes like a wheelchair, catheter or moving house.
If you can’t undress, get your partner to do this.
Take your time – have a quick nap, when you wake up you’re ready to start.
Spasms – medicate just before sex to minimize spasms (consult your GP).
Continence – see below for details.
Changing how you and your partner relate and how you do things together.
Key words: enjoyment, intimacy, connecting, closeness and openness. Understand the expectations and needs of your partner.
It’s not just about loads of sexual positions (maybe one or two suit you both fine).
Separating roles of partner and carer (set times, routines and locations).
Consider the impact of sex when talking with health and care professionals.
Adopting new behaviour and practices, rethinking assumptions
Be creative and experiment.
Communicate as clearly and openly as possible
Resolve emotional issues, acknowledge losses and emotions
Take emotional risks.
Value new abilities or practices, redefine what is helpful and pleasurable.
Discover alternative intimacy and sexual expressions e.g. alternatives to penetrative sex like sensate focus, also see
The Disabled Sexual Surrogate by Lawrence Shapiro 2017 and The Elephant Journal which has an article on making love without having sex.
Body Mapping involves touching areas of your body and seeing how they feel.
Imagination, fantasy, and role-play can lead to new ways of enjoying intimacy.
Appreciating difference and preferences.
Age awareness – whatever your age, go with the drive.
Don’t give up after an initial disappointment.
There is no ‘failure’, only discovering what may work well for you.
Making the effort externally can improve how you feel in yourself.
Understanding and working around your condition
Spasms can be affected by triggers, timing, and medication.
Spasticity – certain positioning may be better or worse.
Closing catheter valve before and during sex.
Prescription drugs can have side effects on sexual function (consult GP first).
Plan ahead – preparation can be a sexy-new type of foreplay.
Finding help with sex and intimacy
Common aids like cushions or T-roll help with positioning.
Resources – websites, blogs, forums, books, talking to other disabled people.
Counsellor, sex therapist can help with advice.
Someone else may act as an enabler when physical help is required.
Sex surrogates and sex workers can also be helpful.
Continence
Continence is an issue that comes regularly in my talks and workshops. One woman had stopped having sex with her partner because of her urine incontinence. She assumed, not uncommonly, that he would not want to have sex with her because of it. Then with her consent I talked separately to the partner. He said that didn’t bother him and there were things they could do like putting an absorbent/waterproof pad or sheet on the bed etc. So when I went back and talked to her she was completely surprised that her partner was okay with her incontinence and sex. I brought them together – they talked about how to resume having sex and deal with the incontinence. Both of them were very reassured and felt more positive about resuming a sex life.
Attractive sexy underwear has also been designed for ostomy users. Sometimes partners are worried that sex may be painful or damage their partner in some way. This is most often not the case and a situation where you should ask your partner whether it does or doesn’t or talk together to a GP, continence nurse or other health professional.
Health Professionals
When talking and connecting with a person who has an impairment, don’t assume somebody is or isn’t having sex. If you are health professional or counsellor or therapist it can be really important to discuss sex and sexuality.
Open the door. Maybe say something like “… Some of my patients /clients find that sex is an issue for them and they find it helpful to discuss this, if you feel this way I would be very happy to discuss this issue with you”. This both opens the door for someone to be able to talk about their intimate life, and also normalises it so that the client/patient can see that they are not the only one.
Don’t assume that just because a person appears confident in certain areas of their life that they will be confident enough to bring up the topic of sex and sexuality with a doctor or health practitioner.
Health professionals need to know how to open the conversation and then refer somebody on. Don’t feel you have to have all the answers. Be honest with yourself about what ideas, stereotypes, hang-ups you might have that may be barriers towards you dealing with sex and sexuality with your clients.
And look at ways that you may be able to deal with these barriers, so counselling for health professionals is valuable, as is peer group work and teamwork. So make discussing sex and sexuality part of something that you as a team do as well, so that you can gain support and information from each other.
ABOVE ALL ELSE…. CONFIDENCE….
Confidence – that is one of the keys, I think, to a satisfying, fulfilling, fun, sex life. And I think some of that confidence can be gained by doing, trying out different things and with maybe a third party like an enabler to help. But I felt that having the physical experience of sexual situations to build my confidence in a positive way was really important for me. An enabler, sex therapist or sex worker can be extremely valuable to help show what can be possible when you need some ideas to navigate sex with an impairment. Be safe and consensual and go to experienced, accredited people. There are some organisations and practitioners listed in the resources section for reference.
Resources Books and booklets
● The Ultimate Guide to Sex and Disability (Kaufman, Silverberg and Odette)
● Secret Garden, by Nancy Friday – one of the first collections of people’s sexual fantasies.
● Urban Tantra, by Barberla Carrellas – explores the vast range of sexual, spiritual and emotional possibilities open to all of us, written in a very accessible style.
● Women, Sexuality and the Political Power of Pleasure (Zed Books), chapter
“Sex and Disability” L Couldrick & A Cowan
● Desires Reborn by Penny Pepper. Erotic short stories featuring disabled characters
● The Trouble with Illness – How illness and disability affects relationships. Julia Segal (Jessica Kingsley)
● Supporting Disabled People with Their Sexual Lives – a Clear Guide for Health and Social Care Professionals – Tuppy Owens with Claire de Than (Jessica Kingsley)
● Sex, Intimacy and Relationships (MS Essentials/MS Society)
● Sexuality and MS: A Guide for Women (MS Trust)
● Sex and MS: A Guide for Men (MS Trust)
Online Resources
● The Sexual Advice Association: helps improve the sexual health and wellbeing of men and women – www.sda.uk.net
● College of Sexual and Relationship Therapists has useful links and resources (www.cosrt.org.uk)
● Mitch Tepper: covers sexual health, disabilities, and medical conditions –www.mitchelltepper.com/about/sexual-health-network
● In Touch previous project about sex and disability for young people with some informative videos on the Leonard Cheshire site see link here:
https://www.leonardcheshire.org /intouch
● Sexual Respect Toolkit: helping health professionals (and you) raise the subject, includes extensive resources –www.sexualrespect.com
● Bladder and Bowel Community https://www.bladderandbowel.org/
● MS Society – Sex, intimacy and relationships (booklet)
https://www.mssociety.org.uk/ms-resources/sex-intimacy-and-relationships-booklet
● MS Trust – www.mstrust.org.uk
● MS-UK – www.ms-uk.org
● Outsiders: helpline, advice, club, campaigning: www.outsiders.org.uk
● Disability Sex and Relationships articles and advice
http://disabilityhorizons.com/category/relationships-and-sex/
● SH&DA: Sexual Health and Disability Alliance for health professionals, including guidelines for using sexual facilitators and enablers – www.shada.org.uk
● The disabled sexual surrogate – Taylor & Francis Online (download pdf)
www.tandfonline.com/doi/pdf/10.1080/09688080.2017.1333894
● Handisex – International sex and disability organisation offering advice and
practical help http://handisex.dk/?lang=en
● Elephant Journal ¬– Life & wellness journal article making love without sex https://www.elephantjournal.com/2015/01/making-love-without-having-sex-adult/
● The Pleasure Garden – selling sex toys for everyone including disabled people www.pleasuregardenshop.co.uk.
● Spokz disabilty website, disability products including sex toys
http://www.spokz.co.uk/Sex-Aid-Products/20
● TLC Trust: connecting disabled men and women with responsible sexual services: http://tlc-trust.org.uk/
This chapter contains illustrative guidance only and advice should always be sought from a GP or medical practitioner.