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.’
David works at demolishing the barriers which MS can create between himself and his wife so that they don’t lead separate lives. Sometimes it feels as though she is building a wall around herself.
David works at demolishing the barriers which MS can create between himself and his wife so that they don’t lead separate lives. Sometimes it feels as though she is building a wall around herself.
But it’s a way off, all these things are a bit of a way off, they’re not going to be, it’s not tomorrow, it’s in the future, and I never thought in five years time I’d be saying these sort of things to be honest. It’s just that I’ve often described it as though sometimes Sandra’s building a brick wall with her illness between me and her, and what I have do is smash it down occasionally, push it over. It’s like someone building with a sandcastle and you have to push it over to try and get back together again, because if you don’t, you end up, I think, leading very sort of separate, sort of lives, and I don’t think you have to. I think you can actually lead, it’s difficult, but you have to do it lead really a very sort of active and it will all be worthwhile doing it.
Ray thinks that being close friends is one thing that has kept him and his wife together.
Ray thinks that being close friends is one thing that has kept him and his wife together.
Ray: I think that ultimately, as we’ve discussed before like, we, if we weren’t married we’d be friends anyway.
Sarah: Yeah.
Ray: And because, I don’t know, you just, something just, something just clicks. And you just get on. And we just, we’re always looking out for each other all the time. Whether it be if you’re coming home, oh I’d better, make a sandwich, so you’ve got a sandwich, or whatever. It’s you know I’ve got to go to town get your tickets because I’m going to the football and thing, you, you know, and so, we look at all, we all look out for each other and always have done all our married life, I think. And Sarah’s just sort of slipped into that pigeonhole, shall we say? And I think Sarah is exactly the same as us. It’s like when, with my late father, my late father was my best friend as well. And he was my brother.. and my other brother’s best friend as well [laughs]. You know, they, it’s not unique or anything like that. And, that’s just the way we are as a family I suppose. And it’s nice that it is.
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.
Mike acknowledges that for some couples life with MS becomes too much for their relationship to survive. But he emphasises that he is, ‘in it for the long haul.’
Mike acknowledges that for some couples life with MS becomes too much for their relationship to survive. But he emphasises that he is, ‘in it for the long haul.’
I was just thinking about what you said about being in this relationship for the duration. I’ve spoken to quite a lot of partners and they’ve more or less all said a similar thing to me. Many of them have also talked about knowing other people whose relationships have dissolved as a result of MS.
[Um, um]
And I wondered if you could just talk a bit about where that motivation is coming from for you to stay in it for the duration?
Well the motivation for actually staying, staying in it for the duration is the fact that I love Jenny to bits and to me the fact that she has an illness doesn’t make a jot of difference at all. I mean, yeah, okay, I can understand where some people would be in a relationship and find that they couldn’t actually cope with it. As far as I’m concerned, what drives me is the fact that I love, I love Jenny with all my heart and you know if this is the way it is then this is the way it is. We deal with it as best as we can.
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.
Mully didn’t know anything about MS when she met and married her husband, but she was optimistic that she would be able to handle it.
Mully didn’t know anything about MS when she met and married her husband, but she was optimistic that she would be able to handle it.
Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.
Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.
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’:
Stella describes the tensions between her and her partner as a ‘clash of intensities.’ Sometimes it feels like he’s trying to break away from her and there is resentment on both sides.
Stella describes the tensions between her and her partner as a ‘clash of intensities.’ Sometimes it feels like he’s trying to break away from her and there is resentment on both sides.
And also it’s, this kind of like tearing away from me lately. It was very difficult for me, because before I felt that I was needed more and more and more, and more and that constituted a lot of our intimacy in our relationship, me caring for him. And, suddenly, that was like taken away and he was tearing away. And so we actually went to… we were always very proud of our relationship and we even thought about becoming relationship counsellors. We were really proud. And so that actually led us to seeking professional help and to having relationship counselling. So that’s late developments.
And but now it seems that mainly… he says he loves me, but he can’t be in this flat any more. And so that’s another headache, really, and, yes, and so it has an impact. I suppose it’s also this kind of, like, if one in the relationship is always, like, really miserable for long periods of time, not feeling well and kind of like intensities clash. So, if I come from work and I’m quite joyful, and it’s creating resentments obviously, huge resentments on both sides. And so, he wants me to be as miserable as he is, or she doesn’t understand me, and really difficult. So I marvel at how other people cope with that.
And then me being quite smug and doing this recording and talking about it all, and him actually suffering all this pain and all these threatening things. It’s just like much.. far, far worse for him than it is for me and so it’s kind of like split. It’s not easy to deal with I suppose.
Betty feels hurt that her partner is friendly and chatty to other people but doesn’t talk to her much anymore and takes out his frustrations on her.
Betty feels hurt that her partner is friendly and chatty to other people but doesn’t talk to her much anymore and takes out his frustrations on her.
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.
Anthony’s wife loses some feeling in her body during a relapse, but feeling always returns and, he says, they are lucky to still enjoy a full sexual relationship.
Anthony’s wife loses some feeling in her body during a relapse, but feeling always returns and, he says, they are lucky to still enjoy a full sexual relationship.
Fortunately, no problems at all, I’m happy to report.
At times when my wife has had a relapse then her feeling in her body does diminish but, thankfully, from that point of view, all her feeling returns and after a relapse and there’s no problem at all with that. Because, obviously, in a loving relationship that’s a very big side and you can’t understate it really, I don’t think. So we’re lucky in that respect.
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.’
Dave and his wife, who are both trained relationship counsellors, contributed to a television film about ‘Sex over 70.’ Dave talks about some challenges of continuing to express love for each other physically.
Dave and his wife, who are both trained relationship counsellors, contributed to a television film about ‘Sex over 70.’ Dave talks about some challenges of continuing to express love for each other physically.
Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.
Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.
He’s at that stage now where he physically just getting around from the bedroom to the kitchen, making a meal and then sort of getting to the computer maybe, to do a bit of work and getting up to answer the door, is just going to wear him out. So he’s more easily tired and I’ve just sort of come to terms with it, you know. I just sort of sit beside him on the sofa, hold his hand and then I’ll sort of get up and say, “Okay, well, let me sort of put the kettle on for a cup of tea and let me sort of cook the meal, you know, because I know you’re too tired to do it and just sort of lay there for a moment, just lay there or go to bed or sleep, whatever you need to do. I’ll just sort of sit and make you comfortable.”
So those times when before we’d would be more affectionate with each other, I just make him comfortable and I’m quite happy to do that. The fact that he’s still being able to talk to me I think is much more important than anything of a physical nature, much more important but I appreciate that that he just sort of misses that and mentions it so I’ll just sort of just play along but I’ll just sort of say, “Okay. That’s fine but, you know, you do all the flirting, make all the jokes you want.” But it, you know, it’s going to be less of an issue, okay. Just let’s sort of just sort of maybe sort of deal with that, you know, tomorrow or whatever it is.” But rather than sort of say, you know, “It’s finished. It’s the end,” which I don’t think is the right kind of thing to say, I’ll say, “Okay, well, you know, maybe in a few months. Maybe next week or whatever it is.” Maybe, you know, maybe things might change but I don’t think that they will really in terms of, you know, the sex part of the relationship. I think that that’s over. But that’s okay.
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.
Morris learned more about his dad’s life through caring for him and their relationship has, ‘improved dramatically.’
Morris learned more about his dad’s life through caring for him and their relationship has, ‘improved dramatically.’
Yes... well like I said we didn’t, we didn’t used to see speak to my dad at all because, you know, when we were younger and we used to see him and has he got I, when I got older he stopped working as much because he was getting poorlier we started, you know, we didn’t speak because he was grumpy yes he was grumpy and you couldn’t really speak to him but then when we were kind of like, I don’t know, his health deteriorated and the hygiene fell on me to like start being with him for stuff it’s a kind of, it was a bit weird, it’s a weird process actually because when I started bathing him my son was a baby so I was bathing my son and I was bathing my dad. which was very weird and it’s a kind of, I shouldn’t really be doing this really you know I’m bathing my son and then I’m bathing my dad, it’s, tell you it’s weird.
And we got talking because you can’t just spend forty five minutes with somebody, an hour, in the bathroom and not say a word. So we ended up talking and yes we ended up talking about how he became to become in the UK, what he did for a living. Because I [laughter] I hadn’t a clue you know, he was an engineer when he first came here and you know how much wages he used to get and so we end up talking and the more I bathed him the more we talked the more we talked the more we learned about each other. I mean some of the stuff he didn’t know about me my friends because he was housebound more or less so, you know, he didn’t get to go out or hear word on the street because nobody used to come and speak to him, his friends never used to come and see him so he didn’t know what I was doing. Usually you pass people say ‘Oh I saw your son doing’ or, there was none of that kind of interaction.
So, yes we learned a lot about each other and now out of probably all of his kids, if he had to say, you know, parents don’t say oh so and so is my favourite but he had to say who he was closest to now if he didn’t say me I’d be upset [laughter] you know, yes I’d be shocked if he didn’t say me because it’s a bit sad really but I actually calculated over 12 months how much times I’ve bathed him or, you know, and it’s quite I mean yes it’s quite a lot of times.
But yes I spent lots of hours extra with my dad . What I’m trying to say is I’ve spent a lot of hours with my dad that I wouldn’t probably have spent with him they always say behind every negative is a positive. And I’ve seen people triumph have tragic, tragedy so it’s that that I’m focused on and I do get emotional when I leave his house or still now, yes I put him to bed and still leave with that, so. He might be in the bath and we’re having a laugh and a joke and stuff in the bathroom but as soon as I leave his house I start, emotion kicks in and that down feeling but I mean I wake up in the morning and I’m back to normal, yes, fully functioning. So, you know, if we speak yes I couldn’t speak to him about it all that. So it’s improved, my relationship has improved dramatically from not talking to being able to tell him absolutely everything.
Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.
Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.
My relationship with my partner has obviously been quite affected by everything that’s happened. We’ve been together for nine years as of yesterday. We moved in together about a month after my mum died. So in most of the time that we’ve been together he’s been involved in, you know, my family. Obviously he was at my brother’s wedding. And he’s obviously, he’s seen, he’s seen my mum decline. He’s seen my brother go from a chap who used to speed round in a sports car to somebody who’s bedbound with all the problems that he has. It’s been very hard on our relationship.
We you know, try to get on with, with stuff and, day to day. He’s given me a lot of practical support, taking me up and down to the Midlands before I learnt to drive, then helping me clear out my parents’ house, helping me with my brother when we’d go up and visit and, and my parents were both alive. He would help me get my brother in and out of bed or help me feed him and, and that kind of thing. Be another person to, for my brother to have a laugh and a joke with as well. He likes ganging up with my brother to pick on me.
But, you know, I can’t say that it hasn’t affected us, because it has. You know, it’s bad enough when you lose a parent and, and maintain a relationship, but obviously having the situation where, you know, we’ve got another person to consider. I mean my partner’s got two siblings and a mother. He’s got a father who, his parents are divorced and his father is abroad. But his family are quite close and they don’t live too far away from us. But, you know, you can come and go and see them as and when. They can come and see us as and when.
But we obviously have to go and see my brother and, you know, having to think about things like, “We need to go and get him some toiletries” or, “Can you go and visit him because I can’t visit him tonight?” or... Yes, I mean we’ve had a lot of problems and a lot of arguments over all kinds of things, I don’t think specifically to my brother, but the strain of, the strain of having that at the back, you know. And sometimes that can come out in arguments like, you know, you know, “You don’t have to do the things that I have to do, you know. You don’t have to worry about your brother” and all kinds of things. It’s, it doesn’t make you feel like a very nice person sometimes when you say things like that.
Last reviewed June 2026.
Copyright © 2024 University of Oxford. All rights reserved.
