Evolving relationships: from partner to carer
One of the harsh things about MS is that it often strikes in early adulthood,1 just when you are entering what should be your most productive years, be it in forming a relationship, having your own family, or making headway in your career.2 It is no surprise that being told you have this somewhat unpredictable illness can throw you for a loop–and it is not just you, but everyone you are close to, who has to learn to live with the condition.
It can be especially hard for the partners of those with MS, for whom taking on the identity of "carer" can be a disturbing concept. People expect to provide care for babies, children, and elderly parents. They do not expect to be the caregiver for a chronically ill partner, their lover, at a time when they may only just be setting out on their lives together.
Thankfully, just because they may be a little uncomfortable with the label, it doesn't mean that partners aren't good at the job. In fact, your partner may be very good at taking care of you, but rather less good at looking after him or herself.
The lesson for partners is this. They shouldn't feel guilty. They shouldn't beat themselves up because they're not superhuman and sometimes feel resentful. What they should do is make some time for themselves–and recognise that while supporting their loved one, they may very well need some support themselves.
It's probably the last thing you want to talk about, but when MS causes problems with sex, it can be a cause of much stress and unhappiness.2 MS can affect the way you feel about intimacy in a number of ways. Firstly, there may be neurological changes that directly affect your sexual feelings and/or your sexual response–things like decreased libido, altered genital sensations, reduced vaginal lubrication, problems gaining an erection, and less frequent or intense orgasms are all examples of direct effects that MS can have on sexual activity.1
Then there are other, more general, symptoms that can get in the way of sex too -you may feel overly tired, your muscles may feel tight, weak or go into spasm, you may have bladder and bowel problems or trouble with your co-ordination, or you may feel numbness or discomfort in other areas of the body so that just being touched is painful.1
Lastly, there are the emotional factors that impact upon sexuality–MS can alter your self-image and lower your self-esteem so that you feel less sexy or attractive, and you may worry about being rejected or feeling dependent. The changing dynamics within a relationship can also cause problems–sometimes roles can be confused and the one who is well can feel more like a carer than a lover, or they may pull away from sex to avoid hurting their loved one. 1
It goes without saying that to begin with, you are going to feel embarrassed talking about intimate details to a health care professional. But they can talk you through the range of treatment options available to help you maintain a healthy sex life. If you think about sexual problems as just another symptom of MS that needs to be dealt with, it might help you bring the subject up at your next clinic appointment. You might find it helps to think about how you are going to describe your problem beforehand (particularly the actual words you are most comfortable with when talking about your genital area).