Motor Neurone Disease (MND)
Relationships and sex with MND
Living with MND has implications for many personal relationships, but especially for the relationship with a husband, wife or partner. Many people, both individuals and carers, told us the condition had made them feel closer to their partner, and that they were able to give each other powerful emotional support. However, adjusting to changes in the nature of the relationship could be difficult. As one woman said, “I find it quite upsetting because he's changed from being my husband to being my husband and my carer, and he's doing things for me which I think he shouldn't have to do.”
It has brought him and his wife even closer together. They have both had to adjust to changing...
Ha, do you think it's changed your relationship together in any way?
Very much so. I think it's brought us together more. Although we were very close, it's certainly brought us together. The reliability on her and the responsibility on her has changed dramatically. Where I would have been, if you like, in the old-fashioned term head of the household, now she's the head of the household and really is having to make, the decisions that we would have either made jointly or I would have made she now makes independently. Because I can't be with her all the time, and because I'm trying to transfer ownership to her so that it doesn't come as a shock at the end. So the, you know, things like where our money is, where the pensions are, and all those financial sides of things we've transferred across. The decision-making on things in the house in terms of decorating or choosing things are, are becoming more Janet's than joint. And she's very uncomfortable with it at times. So it's a transition thing, it's not sort of just a, a wall if you like goes up. It's got to be a transition, you've got to start doing it and getting the other person used to, you know, taking those things and the changing role. And, yes, you do become somewhat of a child in terms of the relationship, because obviously as you progress so the care becomes more intimate in terms of your needs. And you have to be comfortable with that, both of you have to be comfortable with that, and the fact that that is going to progress. And again it's a vulnerable thing, you know.
Another couple found the intensity of being together every day was difficult and their relationship improved a lot when he went to work full-time and she had paid carers. She said, “I could tell him about my day, and re-establish that normal relationship. And that has been great. That's been really, really good, to get that normality back.” (See Interview 39 - Liz's story). A man who cared for his wife said, “I wanted to have a relationship with my wife, not with a patient.” At the same time, providing intimate personal care could also bring opportunities for renewed closeness (see 'Personal care and care support').
Caring for his wife made them closer than ever before, and they put aside trivia and...
So I think it was very important that we really talked openly and freely about how we felt in those last eighteen months. And I think the very process, the very fact of Di's dying as well focussed our minds. So that many of the - a lot of the trivial stuff that had always kind of dogged our relationship was put aside. And we found it easy to do that. And we made a commitment, really, not openly but there was I think there was a commitment on both of us to just making that last year a wonderful year, you know. And to, we had some disagreements, we had just some disagreements. But we really wanted to, we just wanted to continue to be husband and wife together and to live our lives as best we could as we always had done as far as was possible, despite all the kind of hospital beds and commodes and everything that had invaded our house, you know. And we did that on all levels. I mean we decided that as long as possible we would continue to have a sex life. And I understand from the counsellor that lots of people kind of abandon that and you know. But it was difficult simply because it, you know, sort of Di's increasing paralysis. But it was meaningful.
However, many people said they sometimes found it hard to talk to each other (especially around the time of diagnosis) or felt they drew apart on occasion. Sometimes the practical tasks of caring and anxiety about the future made people tired or frustrated, and, in turn, their partners sometimes felt guilty or sad for them. The stress of living with a condition could bring out existing tensions in a relationship or add to the stress of other life events. As one woman commented, “Your relationship may not be at the highest point it's ever been.” (See Interview 49 - Una's and Bill's story). She and her husband had lost their daughter not long before he was diagnosed, and their different ways of grieving were already “making it hard for us as individuals together….I felt MND cheated me of my grief.”
He and his wife have become closer, but sometimes they get frustrated. He admires how strong his...
Living with MND can bring out problems in a relationship, but he and his wife feel close enough...
We haven't actually done it and I guess part of the reason is because, well in my mind I'm not even sure, would there be any counsellor that would know enough, that would, that would know what it was like or would we just have to spend all our time trying to explain to the counsellor what it was like [laughs]. So, so there's that feeling of like there isn't really anybody who really knows and therefore there isn't, there isn't really anybody who can really help you. So we haven't really used counselling. But we, I, I still wouldn't rule it out. We might do at some point, to help us. But it is a two edged sword, you could come out of a counselling session feeling pretty bad.
Her husband finds it stressful caring for her and working. It has affected their relationship,...
What effect has that, has it had any effect on your relationship?
Yes, I think it has, because he has found it quite stressful sometimes. He's holding down a full-time job. He also does a lot of research. Every evening he works on his research. So he's actually doing two jobs, really, in that sort of way. Then he's got to look after the house. He's got to look after me and do the cooking. I've just persuaded him that we need a help, cleaning lady, because he was regarding cobwebs as something that didn't need to be worried about. And we are having a cleaning lady in now. And he is getting quite good at doing things. It's just that to ask a man to do caring is quite hard sometimes, because they tend to do things in a brisk way, quite a quick way, and that can be a little bit too quick for somebody who's trying to move slowly and trying to recharge the batteries. So that can be a little bit frustrating for him, I think. So you just have to choose your moment and ask him when he's ready to be asked, and not when he's got his mind on something else. So that's the thing to do, really.
Would you ever consider getting carers from the Social Services?
Well, they have talked about that and they have offered us them, but we've said at the moment that we think we're coping. And my husband said he would never want anybody in to get me up in the mornings or put me to bed at night. He feels much happier doing that himself. He doesn't want people coming into the house, really, to intrude. I don't think he minds too much people coming during the day, when I can cope with them and see to them. But I think he'd very much resent people intruding into our bedroom and bathroom. I think that would be too intrusive, really. So at the moment he's quite ready to care for me in order to avoid that. When it gets too difficult no doubt he will tell me that he wants some more help. But he knows it is available if we want it.
She gets irritated that she cannot run the household and has to let her husband do it. He finds...
Now with regards to my husband, I think he's found it a lot more difficult. Because as I was saying, I think he thought that in his dotage I'd be looking after him, because he's seventeen years older than me. And it's come to a situation where he has to, well, I suppose look after me, in a way. But I am still fiercely independent. I find it incredibly frustrating that I'm not in control of the house. And that isn't that I'm a control freak. It really is that a woman runs the house.
Sometimes he gets impatient waiting for his wife to say something with her Lightwriter, which he...
Yes. So she can convert typing to speech as it were, which she does over the phone with my family. But again, it takes a long time and that's very frustrating. And in fact I have a failing in that department. When I ask my wife for a particular answer to anything, of course it's bound to take time to respond, either from writing, or even to think about it and that. And of course at times I get a bit impatient and say, 'Well, can I have an answer' or something, which is wrong. I shouldn't do. I should just let her take her time and that. So again it's a problem. And it's something I have to get used to and overcome. And I'm afraid at times it's difficult, because the business and other problems are all on my shoulders, as it were, that I do get a little bit short-tempered at times, thinking, 'Oh, Lord.' But there we are. That's another small problem.
The differing symptoms of MND could affect relationships in different ways. Some people missed chatting and easy communication with their partner when speech was affected, but their physical relationship was unchanged. MND does not in itself affect sexual ability, but people with arm or leg weakness sometimes found it difficult to enjoy physical contact and sex. Some found ways round it by using different positions. Cuddles were often a way for couples to remain close, when sex was no longer possible. Others commented that their enjoyment of sex had been affected by other factors such as depression, and also the menopause (given that MND is most common amongst people over 50).
Their sex life has not been affected, but they miss talking to each other. It can be challenging...
Well, medically, he's, you know, he's got a PEG tube, but it's not changed things, has it? You know, it's still just the same really. We're just, well, obviously when he's not well [Mike hugs Gill and gives thumbs up] - you still love me, then, yeah? [laughs] Obviously if he's not well, you know, it does affect it, you know, and that. But generally we know how important it is. We've both been through marriages before and we know what, you know, so communication has always been a big thing for us, and which has been affected. So we try and make sure that we do do things and we, you know, keep together. So I can't say that it's not had an effect. It has. But it tends to be only when, if he's not well, you know, if he's not, if he's going through a period where he's not well. But physically, no, we're - we've only been married anyway two years, haven't we? [laughs]. We've been together for 22 years but we've only been married for two years.
But never mind. You're still in the honeymoon period [laughs].
[Mike winks] I got a wink then, so he approves of that [laughs]. No, no, we're very close, we are very close. And thank God really, in a lot of respects. You know, it's - because it, spending 24 hours a day, 7 days a week with someone, I won't tell you it's not challenging. It is, for both of us, because it's been a massive change to our lives. But we know what we're facing. And we do have times, don't we? We don't, where we just pull apart, you know, and we just walk way from each other. And that's the way that we deal with it. We just walk away. But we never have time, I never have time on my own really. I don't really have much time on my own, and Mike doesn't, you know. My day the other day working was quite, very unusual for me, to spend a day on my own working. And I managed it, I was fine, you know. It was a brilliant day, but it was peppered with all the time in the back of my mind, 'How's he doing?' because he was on his own, you see. And I'm thinking, 'What if he starts to choke? What if he--?' Do you know what I mean? And so the conversation on the way home was, 'I wonder whether it's worth even risking that, you know, that he's on his own?' Even though he managed. I don't know. I'd, I'd never forgive myself if something happened if I wasn't here, do you know what I mean.
It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as...
Do you want to stop for a bit?
Yeah, it does spoil, it's spoiled our, well, it hasn't spoiled our relationship, it's sort of, it's made it difficult. You know, something that's never been like that, and all of a sudden it is like it, and you, and for the last six years it's kept me like it. And you just keep on going.
Has it, has it made you closer in some ways?
Oh, yes, yes, it has in, in some ways made us a lot closer, yeah. You know, as I say purely by just - as I say, you don't have to have physical sex. You can, we can, I can cuddle her and, I do in bed and things like that, you know. And I hold her, and all this sort of thing. They're all things that - and I try to be as physical as I can. But if your legs and your arms don't go the ways you, the way you're predicting them to go [laughs], it's a bit difficult believe you me, yeah.
They are still able to have a normal sex life. Bearing weight on his arms is difficult, but they...
It's not one of those things you need to worry about just yet.
Not being able to give hugs and cuddles and show physical affection was difficult to get used to.
She misses being able to show physical affection. Now she has learnt to ask people for a kiss or...
Because you can't hug and?
[tearful] I can't even reach out or, and touch them or, so that physical contact is hard. And to cuddle my husband - he has to cuddle me. I can't just stroke his back or rub his shoulders or squeeze his head. All those sort of tender loving things, I can only show it through words and my face. And that's hard. And I've kind of learnt with other people now that, I just ask, and when I'm having a close moment with people and I want to feel closeness, I'll ask them, 'Oh, give me a kiss' or, 'Come and give me a cuddle.' Or with my god-daughter I tell her that - she's only 3 and she calls me - what does she say? Not poorly. Yeah, she says I'm, 'Are you poorly?' And I say, 'Yeah, and that means I need extra kisses and cuddles.'
In some cases, the stress of a diagnosis of MND had sadly caused a relationship to break down. However, some people began new relationships, and said that the new people in their lives loved them as they were and made them happy.
Marcelin never thought he'd have another relationship, but it means a lot to him that Tess wants...
Had you ever expected you'd have another relationship?
No. I, at that time after I have this situation, I've given up any hope in that direction. First of all because I say, 'Well, if you are valid and you have this situation, you are now invalid - who will look at you?' And this is one of those things which I still continue to believe, that if you are in a wheelchair you, you are zero, really, regarding this aspect. And so, well, my partner is telling me, 'No, no, it's not the case, it's not true. Women are more subtle that you think,' and I tend to believe she's right [laughs]. I'm learning.
[omitting interviewer question]
It, it made a big difference, because first of all you meet, you meet someone who is a helper, who does it on a voluntary basis, which demonstrate quite a thoughtful, thoughtfulness as a person. And so the way I've discovered my partner is that I said what, what for me is, is of great value is of, of respect, is the fact that - and esteem - is that this person is taking me in my condition right now. And she has seen pictures of me when I was valid. And she has never seen me valid. But she has seen me as I am. And this is something which I value a lot, I think, and this is why I value this relationship, really. It helped me a lot [laughs].
When Tess first met Marcelin she was worried about getting too close and afraid of losing him....
I mean when I first met him I was very aware of it and my emotions were very much up and down. For other personal reasons as well because I'd lost a sister at the same time. So it wasn't really the best time to be sort of taking up a relationship with somebody who had a terminal illness because I was worried that I would lose Marcelin as well. But so I did find it emotional like the first year or two just sort of getting used to thinking well, you know, he might not be here. You know I don't know how long he's going to be around.
And that was, initially when we first met that was one of my fears. I didn't really want to, I was concerned about getting too close to him because I thought, it didn't seem to make much sense really to be, sort of to having a relationship with somebody who, who might not be here next year. Because you know we don't, didn't know really quite how long he's going to be around and of course we still don't. But maybe over the couple of years, maybe I've just got don't say complacent about it but I just appreciate the time that I've got with him.
And I make the most of that and I must admit sometimes I do forget that Marcelin's got anything wrong with him. I know [laugh] that's silly to say when he's in a wheelchair but sometimes I do forget that you know he might not always be here. But I do, I just try and put that to the back of my mind really because otherwise it just spoils the time that you have got with him. So it, yeah, it has been emotional but I would say in the last sort of six months probably I haven't thought of that quite so much. Whether that's wrong or whether I'm just denying things I don't know but.
Her husband couldn't cope and left. She thought no-one could find her attractive but she met...
He soon became verbally and physically abusive to me and as my speech began to deteriorate he started to mock me. He moved out of my bed very early on so that was the end of my sex life which I found really sad. My self-esteem hit an all time low and I felt like a freak. In August 2003 I couldn't put up with it anymore and he left our marital home. Two days after he left I went to court and obtained a non-molestation order and that kept him away from me for a year by which time we were divorced. The crying and hurt slowly disappeared and I have peace now. I also have great sadness that the man I loved and believed loved me couldn't support me through my illness.
So I had myself down as physically repulsive and didn't believe any man could find me attractive again. I was wrong because in August 2005 I met a man who was able to see beyond my illness and see my personality. We have a sex life and don't let my disabilities get in the way. He makes me feel beautiful and I don't feel ill when I'm with him. Email helped our relationship along but he understood me well within a very short time, so it's great being able to converse with him. I don't know if our relationship will last but I'm happy that we met because he changed my perspective of myself with MND.
In conclusion I have to say don't ever presume that a diagnosis of MND is the end of your life and you can't be happy. I spent about 3 years wishing I were dead and I spend most days now being thankful that I'm not. I'm grateful for every moment with my children who are growing into kind and caring individuals. I think they have benefited from seeing MND close up and although I wish that I were able to do more for them I like to believe they haven't suffered too much because I'm ill. Life with MND isn't a bed of roses but it is bearable if you have the right support and a positive attitude.
However, one young man diagnosed in his early twenties was not in a relationship and did not think it likely he ever would be. He said, “No, no girlfriend. I don't think they're going to put up with me.”
A single mother felt not having a partner made her life much harder because there was no-one to help get her out of the house and motivate her. She said, “Even the wrong partner would be better than no partner, in many ways. Because I think they would say, “We've got to carry on. If only for your son, you've got to be seen to be doing something.” She had begun an online relationship with a man who also had PLS, but felt it had fizzled out because they were at different stages in the condition.
She started an online relationship with a man with PLS. But since she's been using a wheelchair...
But then I went into the chair, and I don't think he's got on so well with that. He couldn't bear, I don't think he could stand this constant letter which was all about the chair. Now I'd got nothing else to talk about but the chair. And he's not gone into the chair. And he's left it now about - well, he hasn't written for about four weeks. Because that doesn't feed his denial, does it, that I've gone into the chair? All I can say is he's five years down the road and he can still manage two sticks on occasions. So he's a damn sight better off than me. He must be marvellously better off than me. He's still on the frame. Five years and he's still on a frame. Been on a frame for two years. I got, what, four months?
People living alone without the support of a partner might need more support from paid carers - see 'Personal care and care support.'
In the small number of cases where MND is discovered to run in the family, starting or being in a relationship raises additional issues. These are discussed further in 'Possible causes of MND'. See also Interview 22 - Liz's story, Interview 34 - Ken's story, and Interview 39 - Liz's story.
The MND Association produce two information sheets on Sex and Relationships, 13A for people living with MND and 13B for partners of people living with MND. These can be downloaded from their website. The sheets provide candid advice in response to common concerns about maintaining intimacy and sexual expression with MND, including worries about the way medical equipment (such as tube feeding and ventilation) may impact on sexual activity. Their information resources for children and young people can also help family relationships by easing difficult conversations about MND. This can help younger family members cope with the changes happening around them due to the impact of MND.
Last reviewed August 2017.
Last updated August 2017.