Sexuality & MS: a guide for womenSection 4: Intimate relationships
Living with MS on a day-to-day basis can be stressful and create pressure or tension within relationships. But some women find that sharing the experience of living with MS brings a new closeness and depth to relationships. Some relationships are not strong enough to survive the diagnosis of MS. Some partners are unable to cope with all that it brings. In this section we consider the importance of good communication and highlight the value of maintaining intimacy, particularly when full sexual activity is not possible.
My partner tries to be optimistic for the future. He always helps me with anything I need. I think our relationship is stronger now as we always do everything together.
Irene
Communicating with your partner
If you are experiencing sexual problems in your relationship then good communication is absolutely vital. This is easier said than done. Many of us find it really difficult to share a discussion about sexual matters and when someone has MS, it can make for an emotionally charged situation.
My husband said from the day I was diagnosed that we were in this together. He has always been there for me and during my bad days has been my rock. Our relationship is very good.
Julie
Below we offer some suggestions for discussing sexual problems in a positive and constructive way:
Don't put it off:
if you are experiencing sexual problems, the longer you leave it, the more difficult it will be to broach the subject. For example, if your libido is diminished or lost, it is tempting to avoid any intimate or sexual contact. This can be confusing for partners who may misinterpret this as rejection or failure on their part. They may feel resentful or hurt. It is better to be honest and to confront the situation together so that you can agree a plan of action.
All I can say is see what will help and don't let it cause the bad feelings and problems that doing nothing can cause.
Lora
Plan ahead:
rather than bringing up the subject out of the blue, it may help to say that you would like to chat at a later time or date. Agree a convenient time and place to talk when you won't be disturbed. You may want to use books, publications, or videos to initiate a discussion. Consider the mood your partner is in and use your judgement. If it feels right to talk, then go for it.
Take the initiative:
when partners seem to have lost interest in sex, it is good to find a time to discuss the matter in a calm and non-threatening way. You may be surprised at their reasons for avoiding sexual contact. If you have recently been diagnosed, they may simply need time to adjust to the new situation. Alternatively, they may be worried about hurting you if you have sex or may mistakenly believe that continuing to have sex can be harmful to your condition. An honest discussion can help to dispel any misunderstandings.
Don't get things out of proportion:
sometimes you can lose your sense of perspective and imagine that your problems are more serious than they really are. The problems can grow in size in your head, but when you talk to your partner they may have a different perspective and feel that your difficulties are much less of an issue.
I try to listen to my husband's problems and he to mine. Then we try to work out a solution.
Julie
Be sensitive:
if you have lost your ability to enjoy sex, explain to your partner that the problem is related to your MS and reassure them that it is not a result of any change in your feelings for them or their lack of sexual prowess. When discussing sexual or relationship issues, avoid accusing, criticising or blaming your partner: use phrases such as "I feel…" or "I would like…" instead of "you don't". Try to keep calm and listen to each other's feelings. If the discussion becomes heated, agree to stop and to resume at an agreed time.
Keep your sense of humour:
a good sense of humour can work wonders when you are talking about sexual problems and sharing a laugh can help to bring you closer. Remember that sex is supposed to be fun!
My husband is a wonderful man with a wonderful sense of humour which has kept us both going during the bad times. We have our down days but I try not to let it affect me.
Suzanne
Think about what you want to say ahead of time:
you may want to prepare a script, practice on your own or, if you can, with a friend. Sometimes using pictures or illustrations can help when it is hard to put things into words. This may bolster your confidence and will help to ensure that you cover the points you want to discuss.
Be realistic:
while some relationships become stronger after a diagnosis of MS, unfortunately, others fall apart. If you had problems in your relationship before your diagnosis, they will not disappear overnight and sadly, your partner may be incapable of providing the support you need. If this is the case, then you need to consider whether your relationship can survive. Professional counselling can help you to determine the best way forward. See Section 6 for more details.
Be honest:
it is natural not to want to worry your partner too much but if you are really feeling down, you do need to be honest so that they understand what you are going through. Putting on a brave face can leave you feeling isolated and make others feel rejected or helpless. If you are going through a particularly bad patch, it could be useful to talk to your GP or MS specialist nurse.
Make time for your partner:
some women say that MS can dominate a relationship and that over time, conversations and social excursions tend to focus on their condition and how it affects them. The other partner can feel excluded and may begin to feel that their needs are not being taken into account. Both you and your partner could draw up a wish list with ten things you would like the other to do for you, sexually and romantically. Then take it in turns to swap treats from the lists.
If you really find it difficult to talk about sexual issues, then write down how you feel and ask your partner to read it. Then agree to discuss the matters you have raised.
Rediscovering intimacy
Intimacy means far more than just having penetrative sex. Physical intimacy such as hugging and stroking is an important element of any relationship, especially when full sexual contact is not possible. Emotional intimacy is also vital – this means sharing things with each other, spending time together and simply 'being there' for each other.
We now have a less physical, more gentle intimacy, more cuddles and we know we are there for each other.
Irene
Maintaining or resuming intimacy can be difficult at times; here are some ideas you may find helpful:
- if you have stopped having sex, temporarily or over the longer term, your partner will need reassurance that you still love them and find them attractive. You can still show affection in many other ways. A kiss, a hug, a note or a few loving words sound simple, but they all show that you care and will help maintain the intimacy within your relationship.
- intimacy doesn't just happen – it needs to be worked at and not just in the context of sexual activity. Make an effort to spend time together; time that is intimate in a non-sexual way such as talking about your feelings, rather than just discussing daily mundane topics such as what you are having for supper. Try not to let your conversations revolve around MS too much.
- if you are resuming sexual contact after a break, be patient and take things slowly. Don't expect everything to be perfect straight away or to be the same as it has always been. If something doesn't work, be flexible and try an alternative approach. Restoring intimacy needs to come before sexual contact.
- be prepared for the fact that some sexual requests will be rejected – this doesn't mean that your partner is rejecting you as a person – they may need time to adjust to the new situation. Any change that needs to occur within your sexual relationship will take time and effort from both parties.
- share with each other what feels pleasurable and what does not. Be prepared to experiment with different sexual positions and be creative in finding ways to give and receive pleasure. For some fun ideas, see Games to play in Section 6.
- remember that if you don't have regular orgasms or penetrative sex, you're not unusual. There is no 'normal'; don't be misled by popular myths about sex. You can still experience sexual pleasure and intimacy through other forms of touch such as cuddling, caressing, massage etc.
- if you are finding it difficult to resolve your problems, consider talking to your MS specialist nurse or another healthcare professional (see Section 5). They will have talked to others before you about the same problems and if they don't have the answer can refer you to someone who does.
- in some cases, it may be helpful to seek more specialist forms of counselling called psychosexual counselling. This involves assessment and management by a specialised sexual therapist. Your MS specialist nurse, GP or neurologist may refer you for this. Counselling will allow you to explore your feelings and any partner's, if wished, in a respectful and professional way. Emotions can be worked through in a non-judgmental way.
When it is too painful to be active sexually, I try to caress, touch, hold and kiss to remind my husband I still need and want him.
Maz
Learn to laugh about it and not get too disappointed!
Ruth
We talk a lot more about intimacy and sexual issues and what each other likes or dislikes. This has helped our relationship and brought us closer together.
Julie
I use my mouth rather than my hands as I don't have enough feeling in my fingers to 'do a good job'.
Jan
Starting new relationships
If you are not currently in a relationship, the fact that you have MS can affect your attitude towards meeting potential partners.
I think that trusting people and enjoying my sexuality were not huge issues for me but that the sadness my diagnosis caused made me feel less like embarking on new relationships and certainly less attractive. Only by chance did I find a kind, supportive partner who I felt comfortable with and they have helped me to feel much happier with these issues.
Esther
Some women with MS experience feelings of low self-esteem and lack of confidence, believing no one will want them because they have MS. These thoughts and beliefs affect behaviour and may result in a reluctance to flirt or start relationships. Others are unsure how to go about meeting a potential partner.
After I developed outwardly visible signs – dragging leg, walking using a stick and at times a wheelchair or scooter, droopy arms and sometimes jerky limbs, I felt that was it! I thought my chances of ever meeting a guy I liked who would ask me out were over. I didn't feel like a fully functioning woman any more. I'd never had good body image anyway, and that put the lid on it – who would want me now? But two years ago I met a non-disabled older guy who asked me out. I couldn't believe it! Since then, I've gone out with another guy, and am now in another new relationship! It has boosted my confidence a lot … but for a while, I thought it was over.
Karen
It can be difficult enough for anyone to find a new partner and having MS can make the process even more complicated. Some women with MS find that there are simply fewer opportunities to meet new partners – perhaps they have given up work and/or have cut back on their social life. However, many single women with MS do meet partners and go on to have long and successful relationships.
Below, we suggest some ways of meeting partners and how to talk to them about MS:
Widen your horizons:
it is often easier to set your sights initially on meeting new friends in a social environment rather than looking for someone with whom you could have a sexual relationship or long-term commitment. As a way of meeting new people, it is worth considering joining a health club, enrolling on a course at a college, joining a musical group or taking part in volunteer work. There may be specific groups in your area that cater for the single person and organise social events - these can open the door for all sorts of new experiences. Your MS specialist nurse may be able to provide further information on this topic, or try searching the internet.
Consider dating services:
if you want to meet a new partner, many women use personal ads, agencies or online dating services. Millions of people use online dating services; many sites are broad-based, with members coming from a variety of backgrounds looking for different types of relationships. Other sites are more specific, based on the type of members, interests, location, or relationship desired. Some dating sites allow you to browse for free for a limited amount of time and provide a mailbox so you do not need to disclose your personal e-mail address unless you want to. Safety is a really important issue - remember that not everyone is honest or trustworthy. Follow the advice given by the dating service.
It took me a while to pluck up the courage to try dating websites, and I met a few frogs before I found some princes! I decided that, for me, free websites weren't always a good idea – paying up front to be included implies a greater degree of commitment, making me feel more comfortable that someone else had the same motives as me! I'm always cautious, trust my gut reactions and take the time to get to know someone through the website, then by exchanging emails, before arranging to meet. Apart from anything else, when we meet face-to-face we have plenty to talk about.
Sarah
My advice would be to think about how you want to appear in your profile and what sort of relationship you're looking for. Get a good friend to look at what you've written. I tried to be honest but you can't expect the same from others! I prefer a relatively early face-to-face meeting as I feel nothing can beat it; it can be very disappointing to find that you just don't gel with someone you felt compatible with after emailing for an extended period.
Anne
As a gay, disabled woman, I have found it hard to develop new relationships. Instead I have been finding it easier to meet women on the internet. It has been a good way of forming relationships and I have been travelling all over the country meeting other women because of it.
Trudie
Go online:
some women prefer to use chat rooms on the internet. These can be very diverse and open up a whole new world of communication with other people. Some use them to develop friendships, others want more than this and some chat rooms are specifically geared up for sexual encounters. There are also specific disability-related sites that allow you to post personal ads, or have free chat rooms and you may feel these are more appropriate for you.
Partners have known of my MS in advance of a relationship. In two relationships I felt very supported so it highlighted the positives about our relationship. In one relationship, I felt patronised – 'Look everyone – my girlfriend's disabled and I'm OK about it' so I guess it highlighted the negatives.
Jan
When you do meet somebody, if they are not already aware of your MS, it raises the dilemma 'to tell or not to tell'. If you decide to tell, then you need to decide when to tell them. There is no right or wrong way to do this and to a certain extent, it's a matter of what feels right for you. Some women prefer to be open about this from the outset, while others decide to wait until they know somebody better and feel more relaxed with them.
I don't cover the MS up – it's not fair to the other person.
Michelle
I wait until the second date before I tell. If I like someone enough to see them again, I reckon I should tell them I have MS. If I leave it longer, it feels like the elephant in the room. Somehow that seems to make it a bigger deal than it is for me; MS is just a small part of my life.
Emily
There is no way of predicting how somebody will react – many people will take the news in their stride while others may need some time to absorb this new information. Realistically, it may affect the way that some people behave towards you. Their response will partly depend on how much they know about MS and it may be helpful to suggest that they read one of the MS Trust's booklets, such as MS Explained so that they are aware of the facts (see Section 6).
If you are single, it is hard to broach the subject with a new partner. I could see that when I told people I had MS, some of them treated me differently. This put me off meeting new people.
Esther