Sex and MS: This Woman’s Perspective

This week Emma Rogan feels a little bit… awkward.   No one who walked into the room left without having some of their ideas changed to a more sex-positive way. It was after lunch, it wasn’t in the dark and they didn’t whisper when they spoke about positions, difficulties climaxing, drugs that help or toys that work about lubrication, orgasmic spinal centres not getting enough stimulation and vacuum device to help with erectile dysfunction in loud voices and in public! They were talking about sex and people with MS.  “For most people, sexuality and its expression are a natural and important component of self-concept, emotional wellbeing and overall quality of life” World Association of Sexology Sex is a core part of being a human yet in this society it’s a topic so weighed down by disgust and shame that having a sex-positive discussion is almost impossible. Add to this living with a nerve-signal, body-altering condition and we’re all silent. I have scars in/on my brain and spine and damage to my nerves causing loss of feeling. I’ve not always been able to feel the touch of a lover and I’ve faked so many orgasms I can’t count. I’ve had great sex, fall-asleep sex and everything in-between. Sex only got better when I was honest about whom and what turned me on.  There are thousands of women with MS and their sex-partners having unfulfilling sex lives for all sorts of reasons. Maybe it’s because of the dreaded T word- talking. Maybe being diagnosed with MS has severely impacted how we feel about our body and our personhood has been seriously harmed. Maybe it’s a traumatic experience in the past that has damaged our bodily integrity. Maybe when we’re in front of our neurologist our sex life not on the priority list. If we value your sex life, we must talk about it. Otherwise, we leave the clinic without a referral to a therapist or having a conversation with the MS nurse or a getting prescription for something useful or tips on what would work for us.  We’re complicated creatures and if having MS is having an impact on how we feel about ourselves, we need to deal with it. If there are issues with our relationships, we need to talk with our partner and consider seeing a couple counsellor. If it’s something physical (loss of erogenous/clitoral sensation) speak to your neurologist or an urologist. Ask someone and learn to talk about it so when you do talk with your girlfriend or boyfriend, wife or husband or with someone you trust, you start getting sexual healing. MS Ireland has a trained psychosexual therapist on their staff, Mary Leonard (maryl@ms-society.ie) and she’s available if you need her help. Get in contact with an accredited therapist.  Imagine living in an Irish society free of repressive attitudes, where people are decent to one another, disagree and still get on and where there’s a celebration of what it means to be a living, breathing human being. Imagine sex being a routine, part of daily life without competition and not about performance. Being with someone who really turns you on, you can talk to and who makes you happy is worth talking about. Sex doesn’t need to be mind-blowingly amazing every time but pleasurable, yes. The people from earlier were Charalampos Konstantinidis and Moira Tzitzika at the EMSP Spring Conference in Athens, 2017. I’m not a Greek goddess no matter how amazing I think I am. I’m an ordinary woman with needs and desires and I know what and who makes me feel good. Learning about and understanding the issues I have is a step towards me learning how to ‘overcome obstacles effectively’ (Moira Tzitzika). Having MS has not diminished my desire to have a healthy, sex-positive life and if talking about it helps, being awkward is something I know I can overcome. I’m on Twitter @emmadragon a lot and am eager to chat about this and other MS topics.  Moira Tzitzika MSc, BTEC, EFT, ΕCPS, MSMC Charalampos Konstantinidis, MD, FEBU, FECSM  MS Trust Sexuality and MS: A Guide for Women