Sexuality & MS: a guide for womenSection 7: The partner's perspective
This section is intended for the partner of a woman who has MS. It aims to give you a better understanding of how MS can affect sexuality and intimacy and offers tips to help you look after yourself and your partner, talk about this sensitive subject and work together.
MS can be a very difficult condition to live with, not only for your partner, but also for you. The chances are that since your partner was diagnosed, both your lives have changed to some extent – perhaps dramatically – and your relationship may also have been affected.
I think that partners should know that it is natural that they too should grieve for what has gone and won't come back. If you do feel bitter and resentful, sometimes it's better to acknowledge those feelings and not beat yourself up for having them.
Judith
It has shocked him, believing I would always be strong and there for him. We are not so close anymore – I try and hide some of my problems from him as I don't want him to be embarrassed for me.
Maz
Being the partner of someone with MS can be very challenging and you may be experiencing a whole range of feelings that are affecting you either physically and/ or emotionally. It can be difficult to know how to support somebody with MS – perhaps you feel unsure about what to say or how to comfort your partner? Unfortunately, there are no easy answers, but the very fact that you are reading this shows that you care and want to understand what is best for your partner and your life together.
Adjusting to change
MS can affect many aspects of life. Your partner may have become less self-sufficient and more dependent upon you. Maybe she has had to give up her job and you are now the sole breadwinner, with all the added responsibility that this brings.
Your partner may have changed as a person – perhaps she has become less confident or less positive in her outlook. She may find it difficult to believe that anyone can still find her sexually attractive or she may feel like something of a burden to you. She may feel sexually vulnerable and need constant reassurance.
I know she feels she can't fully fulfil her part in this relationship and she does see the effect it has and is very self-conscious. She has very low periods where her self image/ confidence is at breaking point. She gets very questioning and jealous of my abilities as an able-bodied person. She has to be encouraged more to attempt to try things to build her self-confidence up.
Grace, partner
Your partner may also have undergone some physical changes. She may have to cope with unpleasant symptoms and may be less mobile than she used to be. Perhaps she has to depend on you for more of her daily needs and it may be that you have had to become involved with aspects of her care that make you feel less of a partner and more of a carer. This can have a profound effect on the way a couple view each other sexually. Just because you are a partner does not mean that you have to become a 'carer'. It is important that you are both able to feel a sense of independence and autonomy. The ability to do that will vary depending on your circumstances and you may have to enlist the support of others to make it possible. Talk to your partner's MS specialist nurse or social worker to see what options are available to support you both.
I feel I have become more dependent on my husband to help with things when I am having a bad day. This can be strange because he becomes a carer, which is a strange relationship to have with someone you love.
Julie
Many people take these changes in their stride but others experience a range of emotions. You may feel anxious about what the future holds. Perhaps you feel angry and frustrated that your life has been disrupted? Resentful that life seems to revolve around the needs of your partner. Or guilty that you struggle to feel the same way about your partner now that she has MS? Rest assured that these feelings are entirely normal and you are certainly not the only person to feel this way.
What can you do to help?
Just being there to provide support can be a huge benefit for your partner. On the whole, it is best to take your cue from your partner. MS is a variable condition and symptoms can come and go. She may feel much stronger and more positive on some days, while on others, she may need a great deal of support and sympathy. Most women with MS want to be treated as a woman and not a patient or just a person with MS.
Although you may feel that you need to have all the perfect responses for your partner, simply offering to listen can be just as supportive and reassuring. There may be certain topics that you find too difficult to listen to. Or there may be times when you are not in the mood or feel that you have heard enough. Suggesting a break from listening and arranging to pick up where you left off later can give you breathing space and time to think things over.
In turn, if you partner sees that they are able to talk freely, they will be more open to listening when you need to talk.
It is so hard to ask our partner questions sometimes because 'we should know'. We don't always know! Please don't get angry if we don't react like you think we should … we just might not understand.
Jon, partner
It can be helpful to learn more about MS so that you understand what your partner is going through. For example, it is important to realise that some symptoms of MS are 'silent' - they cannot be seen on the outside and are not obvious to other people - but this certainly doesn't make them any less real or difficult to cope with. A classic example of this is fatigue. Fatigue is both a legitimate and common symptom of MS that can impact on many aspects of day-to-day life, so if your partner complains of feeling exhausted, she is not making excuses.
My partner… is still learning about MS. He is surprised sometimes at how quickly I become fatigued - but he learns fast and does not put me in any situations (parties for example) where I feel tired or stressed.
Esther
Try not to feel rejected if your partner is unwilling to have sex – it is unlikely to be a reflection of her feelings for you. MS can have a major impact on the way a woman responds sexually and these effects may be temporary or longer-term. Section 2 of this book explains how MS affects sexuality. If sex is off the agenda for a while, it is still important to show affection and there are plenty of other ways to stay close as a couple.
There is always the underlying fear that it's something to do with oneself. This sounds rather self-centred, but her disinterest in sex (for MS reasons) undermines my own self confidence.
David, partner
If you are struggling to cope in your role as a carer, you may find it helpful to contact one of the relevant organisations for carers (see Section 6).
Many couples find that working through their problems together can bring them closer and strengthen their relationship but in some cases, relationship or sexual counselling can be the best way forward. Sources of help can be found in Section 6. Some couples find that living with MS can put their relationship under initial pressure but that after a period of adjustment, they come out of it feeling closer than ever before. There is no way of predicting how a relationship will be affected.
I think our relationship is stronger now as we always do everything together. We now have more gentle intimacy, more cuddles and we know that we are there for each other.
Irene
Looking after yourself
To support your partner, you need to be in good shape so remember to take care of yourself! The following general advice for healthy living can help to keep your energy levels high:
- get plenty of sleep.
- eat healthily.
- drink plenty of water at regular intervals throughout the day.
- make time for yourself when you can socialise and relax.
- take regular exercise – this doesn't necessarily mean you have to sign up to a gym – a brisk 20-minute walk can be just as beneficial.
Remember that even though your partner is the one who has MS, you are both living with it and your needs are important too.