Let’s talk about sex…

7 October 2018

A lot of people with MS will experience sexual problems at some point in their lives, but yet we often find it hard to speak up about sex and MS. We think this needs to change. 

OK, I am clearly showing my age here but do you remember the Salt-N-Pepa song from 1990?

Let’s talk about sex baby
Let's talk about you and me
Let's talk about all the good things
And the bad things that may be

So let’s do just that!

I was diagnosed 11 years ago, and I don’t think any health professional has ever asked me if I have any problems with my sex life. This was something I pondered when  last year I sat in on a talk about sexual problems for women with MS with Dr Sohier Elneil who is a Consultant Urogynaecologist and Uroneurologist at University College Hospital and the National Hospital for Neurology and Neurosurgery in London. She said that MS nurses have got much better at talking to their patients about bladder and bowel problems in the past few years, but still the subject of sexual issues very rarely come up. She then pointed out that if you do have issues with your bladder or bowel that quite often sexual issues will also occur as it is all connected ‘down there’.

Actually, wait a minute, strike that…’down there’, why would you refer to your sexual organs in a rather shameful way as ‘down there’? I guess this all ties together with why we are so bad at talking about these things. And if nurses don’t ask, and we won’t raise (no pun intended) the subject, where does that leave us?

This is the reason that we at the MS Trust have written two books, one for women and one for men on the topic of sex and MS. We have actually had the books for quite some time, the first “Sexuality and MS: a guide for women” version came out back in 2007. But this year when it came to reviewing them, we decided that we wanted to do something different. The feedback that we had from the previous books was always very good, we had even won some awards for them! But the tone was perhaps a bit dated, even quite negative in places and the feedback we got was that they were very hetero-specific and quite technical in places. Maybe some images might be helpful and break up the text a bit too. Also the book is about sex, not sexuality, so it seemed it might be the right time for a change in the title of the women’s book. So when a member of the info team asked me to read the old version of the women’s book and give her some feedback before she started writing the new one, I thought it sounded very interesting.   

I found that there was indeed a big focus on people in relationships, especially hetero-normative relationships. But people of other sexual orientations get MS too and the book didn’t really speak to them. In fact people who are single get MS too, but that doesn’t mean they don’t want to have an enjoyable sex life even if they don’t have a partner. Some people might have several partners. As the world is much more open about these things we thought our books should move with the times.

Another thing I thought weird with the books was that even though it was a book for women I was reading, there was a lot of focus on penetration, almost like it isn’t sex unless there is that specific act. And well…we know that isn’t true, sex can be so much more.

The third thing that I found was that about the section on emotions and sex focused on how when you have MS that you perhaps feel self-conscious about your body, perhaps immobility had made you get lumps and bumps you didn’t like. Although this is probably very true, personally I felt like we need to move away from the ideas that only “the beautiful people” are allowed to have and enjoy sex. I really like the body positivity movement which is “an acceptance and appreciation of all body types” and I felt that things like “dress so you feel pretty, hide the bits you worry about” was perhaps not great. To have a book to empower women to have a good sex life with MS needed something different. I think you’d be hard pushed to find many women who are 100% confident in their body whether they have MS or not, so I think it was important to normalise that too!

We are very happy with the book that we produced (I say we, I only fed back what I thought!) And the same goes for the book for men. We hope that we now have two books for people with MS who want to enjoy a fulfilling sex life.

We hope that people with MS and their partners (of all sorts) will find the information and tips useful. Perhaps even feel like they then can ask their health professionals about problems they may have as well. Because your MS nurse will have heard it all before, and talking about it is so important. The book includes some tips for how to start a conversation with your health professionals if you’re feeling a bit unsure about how to broach the subject.

Having worked for the MS Trust for nearly 11 years, I know that when we post about sex we generally don’t get many comments, as it is a sensitive subject. But it can also be a fun subject. Seeing the funny side of MS can help situations that sometimes can be embarrassing. I remember having a chat with a friend of mine who has MS a few years ago, who would suffer quite badly from fatigue after psychical exercise. She told me that the first time her and her new boyfriend had sex that when she got up afterwards her legs didn’t want to work and she fell over. Her partner didn’t get worried that she had fallen over, he simply thought that he had been that good…my friend just laughed at him and explained that no, it was the MS…

Laughing aside, real sexual problems aren’t a laughing matter, and it can really be a huge issue for people with MS, and if we don’t dare to speak up about it, how can we address it, to make it better? Because in many cases it can get better, you’ve just got to find a solution that works for you.   

So let’s #SpeakUpAboutSexAndMS let’s talk about sex baby, all the good things and the bad things just like the song goes. Perhaps rather than Stoptober we should have “let’s get it Ontober”!  We can all do things to speak up and not be ashamed about wanting a good sex life. I for one promise never to say ‘down there’ again. What will you do?         

Information on sex and MS

Our information team has recently updated our books on sex and MS for men and women. These books look at how MS can affect sexuality and intimacy and how you can manage these issues.