Multiple Sclerosis: friends & family experiences

Love and relationships with MS

After a diagnosis of Multiple Sclerosis (MS) people may worry about possible effects on their relationship with their partner, if they have one, and their planned future together. It is sometimes reported that couples where one partner has MS are more likely to separate than the rest of the population, but in fact there is little evidence to support this. There has been some research that suggests women who have MS are more likely to experience separation than men, but overall the rates are very similar to the rest of the population. The MS Society offers a leaflet on living with the effects of MS, which includes some advice about relationships.

People whose partner has MS may find their relationship continues largely as it did before. Some people we talked to said their partner was still the same person they had originally fallen in love with and that was unchanged. Some felt it had brought them even closer. David says it is important to keep talking to each other and work hard to stay close together so he and his wife are more than ‘a carer and someone who is sick.’
On the other hand, living with MS may bring to the surface tensions that were already there, or create new tensions, as people adapt to changes in their social lives or take on caring responsibilities, particularly if the person is more severely affected. Louise, whose husband has had primary progressive MS for 15 years, said, ‘You marry one person and you get another’. Eric’s wife has had MS for 30 years but in the last few years it has progressed markedly. He now feels he is ‘75% carer and 25% husband’. These are all normal responses and no-one can predict how they will feel if it happens to them; it is likely there will be good days and bad days.
Some people had married knowing their partner had been diagnosed with MS. Mully and Chez admit they didn’t know fully what that would mean for them.
Although Mully and Chez’s relationships had lasted, Kay described how her brother’s did not. He got married after the diagnosis and his wife was optimistic at first, but eventually left him because she could not cope with his mobility problems. If people are diagnosed quite young, sometimes family members may worry whether they will have a relationship with a partner, and a family. Louise’s son now in his 30s, has not had a long-term relationship since his diagnosis. Ann’s daughter, though, recently diagnosed at the age of 18 is getting married soon.

People talked about the stresses and strains that went along with living with a partner who has MS. Dave said, ‘It’s a good job you’re in love, or you wouldn’t do it.’ Betty and her partner had lived together for 31 years, but over the last 5 years his condition has become much worse. She commented, ‘The person I fell in love with I lost five years ago. It’s a bit like living with a stranger sometimes… Sometimes you do want to walk out… but you don’t do that. I’m not going to give up on him’:
Several people talked about other people they knew, including their own parents, siblings or children, who had separated from a partner with MS. Carole and Anita both described how family life was affected for them as teenagers by the separation of their parents – in both cases it was their mother who had MS. Alice had made a decision to leave a partner with MS. Although she stopped being what she called his ‘romantic partner,’ she has sustained a long, loving friendship with him:
Morris described a similar situation between his parents. His mother continued to come round and help his dad but they had not lived together for some years. 

Sexual life had changed for some couples, but not for all, and people had different reactions when sex became difficult or impossible. Karl said his sexual relationship with his partner was quite good and that you just have to ‘work around things.’ Ian also said that his wife’s MS hadn’t affected their sex life, which was probably even better now that their children had left home.
Sex had ‘dwindled’ for some, as a result of physical incapacity or the presence of urinary catheters and sometimes it was ‘virtually non-existent.’ Eric and his wife both felt deprived by the lack of sex in their relationship. For some couples, one partner felt the loss more than the other. For Louise it was a ‘tragedy.’ But, losing sex did not always mean the end of physical intimacy. As Chez said, ‘We still kiss, we still cuddle, we still have the love that we had 25 years ago.’
MS also had an impact on other important relationships. Kay’s involvement in her brother’s life has affected her own partnership. Morris’s relationship with his dad has improved as a result of caring for him. He said it was almost a role reversal.

Last reviewed July 2018.

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