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Multiple Sclerosis: friends & family experiences

MS: dealing with emotions

When somebody is diagnosed with a long-term condition they, and people close to them, can experience strong emotional reactions. People need to adjust to a new way of seeing their lives and their relationships, which can be hard. As the condition develops over time people go through a range of emotions and there may be good days and bad days. Relatives and friends spoke to us about their own emotional reactions, and those of the person with MS. They also told us about problems with memory and thought processes that they were seeing in their relative, and how they dealt with their own reactions to this.

Relatives may feel they want to hide their own feelings of being upset or distressed and to ‘be strong’, both at the time of diagnosis and as the condition progresses. Several people talked about putting their own needs and emotions second because they thought it was much worse for the person with MS.

 

Emma says she has always been emotionally strong. When her husband was going through tests she pretended to him that she thought everything would be ok, and only cried when she was alone or talking to her mother and sister.

Emma says she has always been emotionally strong. When her husband was going through tests she pretended to him that she thought everything would be ok, and only cried when she was alone or talking to her mother and sister.

Age at interview: 37
Sex: Female
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I didn’t cry at all because all, in my head the only thing, well I was crying in the bath, I was crying at work, I was crying if somebody came and say blah, blah, blah but the moment that I went into the hospital, I went to the toilet, I washed my hands and sorry, my face and I say, “No, I can’t cry”. So I didn’t actually make it very serious in front of my husband, it was just, you have to be strong, you can’t cry, somebody has to be strong So I didn’t cry, so I was and then my husband’s mother, mother came as well and, you know, we were pretending that, I was pretending personally everything was fine, blah, blah, blah yes there’s a problem but, you know, they are exaggerating, blah, blah, blah. But those two words were in my mind all the time

So it was kind of eight, or, or nine when I went, when I say, you know, “I’ll see you tomorrow, I leave you here now, I’ll see you tomorrow”. And I remember coming here con, contact the first person I called was my mum in Spain. And I couldn’t, I couldn’t talk. I just was crying and my mum, you know shouting back. “What happened, what happened? What happened?” And I couldn’t say a word. I couldn’t speak. Which is amazing because I always been the kind of girl, very strong that never cries. My sister was the one that was crying all the time and I got the blame, but I never cried. So I just couldn’t talk. 

And I told her how I couldn’t, I’ll call you in 10 minutes I can’t talk now. And then my sister called me how, or my sister, or, no, I kind of tried to calm down. I, ten minutes I called back to my mum and I tell her what it was. And I couldn’t stop crying basically. And then my, I called my sister and again very bad and my sister told me, “Do you know what it is?” And I say, “Yes”, I’m reading because as I was talking, as well, the first thing I went was Internet, in MS Society, I just typed it, ‘Multiple Sclerosis.’ and I came up with the MS Society, what is this, what is this, what this is? I started my research. This is the last four, four or five months. And that was it really. 
 

Anthony bottles up his feelings of frustration at the effects of his wife’s MS, reminding himself that it is she who has the condition, not him.

Anthony bottles up his feelings of frustration at the effects of his wife’s MS, reminding himself that it is she who has the condition, not him.

Age at interview: 43
Sex: Male
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It can really get you down, really down. And that applies to both of us. I don’t feel I can show it as much to my wife as I would. We have a very close relationship and we share all thoughts, everything and it’s possibly the one thing that I don’t feel I can ever tell her the full extent of how down it makes me feel because I keep having to tell myself, it’s not me that’s got it. 

And you’ve heard, sometimes I’ve heard a phrase, you know, it’s as difficult for the carer as it is for the person who’s got it. I don’t believe that. I cannot believe that. I’m lucky. I am still physically, well, no problem at all. So how can it be as hard for the carer as it is for the person that’s got it? But it can certainly be difficult, very, very difficult and at times, it has got me very, very down, especially when it starts affecting my wife at work. I know how much that means to her and the idea that sooner or later she might have to give up work and all the implications that would bring really does get me down. And I don’t feel like I can really talk properly to her about that, not to the full extent because I feel I have to protect her from worrying about me. She’s got enough on her plate, you know. 

But the idea that things will never be the same or we’ll never be able to do again the things that we most enjoyed, we used to do a lot of walking. That’s, clearly, the opposite of what she’s capable of doing now and what does get me is seeing other couples our age, you know, to indulge in their interests without limits, without restrictions and there’s so much that we like to do and get out and about and see that either isn’t possible or is only possible in a very restricted way and certainly the amount that we can do to fit into a day. I am somebody that I have trouble sitting still, my brain flies off into all sorts of weird and wonderful thoughts all the time and I’m always out and about doing things, moving around. 

And my wife is at the other end of the scale in that she can’t and what I find really difficult sometimes is doing everything at the pace that she has to, through necessity, stick to and I know I’m patient but there’s still impatience in me that really frustrates the hell out of me. And I think what frustrates the hell out of me about it is that I can’t speak to her about it. I don’t feel I can. We’ve got such a fantastic relationship and always have but and we always, like I say, talk about everything but I don’t feel that I can tell her the true extent of my frustration because she’s the one with the condition, not me. 

So do you just have to sit on that and bottle that up inside yourself or do you find some way to let it out in other ways?

I tend to bottle it up. I haven’t really found a way of letting it out. I can distract myself pretty well. That’s as far as it goes really. Yeah, frustration with everything, just not being able to do anything about it, seeing her go downhill.
 

Even though she could be ‘breaking inside’ when she was looking after her mum, Anita put on a ‘brave face’ and tried to be strong. Sometimes she felt guilty for wishing she didn’t have to take responsibility.

Even though she could be ‘breaking inside’ when she was looking after her mum, Anita put on a ‘brave face’ and tried to be strong. Sometimes she felt guilty for wishing she didn’t have to take responsibility.

Age at interview: 37
Sex: Female
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And it’s quite interesting, I’ve often in my mind thought about it and thought almost the MS paralysed me in a way. It, if you, if I think about all of the symptoms that my mum suffered, the, the loneliness, the, you know the inability to do things, the frustration, the, the anger, you know, all, all of the paralysis of the, the, what went with her illness for her also I felt it, I felt it to probably a really unhealthy degree because we were with each other pretty much 24/7 and I was just absorbing all of this and trying to buffer you know, how, how it sort of felt for her.

So I guess I always felt that I had to, and this is, you know, something that I still do now, is I guess I always felt that I had to put a brave face on and be strong and that was my, that’s what I learnt was I had to be strong. I was the strong one. You know, I kept the family together and it, albeit that my father and my sister were almost dropping in and dropping out because my father didn’t, my step-dad, didn’t spend a lot of time at home, Even at the weekends he would go off and you know, sometimes just not be there. And it got to the point where he was staying out overnight and clearly he had found someone else. So again I had that to sort of deal with. And, to try and act as a buffer for my mum that, you know, to try and protect her from, from some of that, that sort of thing.

So I felt an incredible you know I was just completely relied on, I was completely the one that sort of kept everything together and I kept mum going. And sometimes I think that was manipulated and abused a little bit. And I think my sister just assumed you’ll get on and do it and had no concept of just what I was going through really. And we talk about that now. And my step-dad I think he used it as a to manipulate kind of, you know, I can remember things like yeah, I must have been a bit older, I’d got my first boyfriend, so probably about 18, 19, my first sort of really serious boyfriend. And I can remember you know, him having a conversation with my mum saying, “She’s going out, she’s leaving you again, she doesn’t love you, what sort of daughter is she?” And there was quite a lot of that that sort of went on because I think he wanted me to be around, he wanted me to be there because it stopped him from sort of picking up on some of that.

And there were, were times when I just remember just coming home and just thinking I really can’t put up with this anymore. And then of course you would feel really bad for feeling that because it isn’t about you, it’s about that person. So no matter however bad I felt I felt even worse by thinking about how bad I felt and the fact that I was dwelling on myself when actually I could still brush my hair everyday and clean my teeth and, you know, those were things that I’d become so focused on and so aware of that I felt like I couldn’t ever complain about anything. And, as I say, had to always be the strong one but, you know, I could be absolutely breaking inside.
Louise Z’s husband was distressed and kept crying, in disbelief, when they heard about their son’s diagnosis. Louise herself initially felt numb but, partly as a result of other family and work pressures, became ill with anxiety and depression. Carole cried every night as a teenager because she had no one to talk to about her ‘frightening’ experiences of living with her mum’s MS. She felt relieved when her mum eventually went into long-term care. Morris finds it ‘heart wrenching’ to see his dad’s progressive disability. ‘I don’t cry when I’m there,’ he says, ‘but I cry when I leave.’ 

People also felt angry and resentful on occasion, both for themselves and for the person with MS. Dave talked about ‘frustration with the situation, the disease, with yourself’. Feelings of fear for the future and helplessness were also described. When her husband was diagnosed, Sarah Z felt an ‘emotional rollercoaster of fear, anger and concern.’ Years later she felt outraged when her husband died, from what she saw as preventable and treatable complications of bowel surgery. Alice also feels angry sometimes but she tries not to dwell on it.
 

Betty feels angry at having been forced by circumstances into being a carer against her will. And she is angry with politicians and society because of their expectations of what a carer will do.

Betty feels angry at having been forced by circumstances into being a carer against her will. And she is angry with politicians and society because of their expectations of what a carer will do.

Age at interview: 58
Sex: Female
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And the other thing that really bugs me is when people, they don’t know what carers are like, they assume I’m a carer so I’m employed by the government, or whoever, and I get paid for it. Well, I’m sorry, you know, I am a carer, the people that they assume I am, they’re employed, they get salaries, you know, I do not. So we’re, there’s often that and the other thing that really annoys me, sorry I’m sounding very angry here, is people like politicians who are always saying, ‘Yes, we value you, we can’t cope, this country cannot cope without you,’ and then they pat us on the head and they forget about us. And that is so wrong. It really is wrong.
 

As a teenage carer Anita felt angry that her mum’s MS seemed to be so much worse than other people’s.

As a teenage carer Anita felt angry that her mum’s MS seemed to be so much worse than other people’s.

Age at interview: 37
Sex: Female
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And I think I felt angry that even people with MS, because we knew a lot of people through the MS society which I did used to take my mum to, and actually that was a real sort of lifeline, but even people with MS didn’t seem to be quite as unwell as my mum. My mum just seemed to be really, really sick. So we’d go to the MS club and there would be people there that almost seemed, you know, they could walk on sticks, they could, my mum couldn’t. My mum couldn’t feed herself, my mum really couldn’t hold a conversation. She would look to me, if someone asked her a question, to sort of almost speak on her behalf, not because I didn’t, I wanted to take over from what she was saying but just because she was quite confused and she knew that I would speak, you know, truly on her behalf. 

So I always felt like she was a lot more ill and we needed more support than, that, you know, to me I was the one that took my mum to the Friday night fish and chips night with the MS society. Everybody else there was with their husband. There wasn’t daughters there, but I was the daughter that had to take my mum because if I didn’t she wouldn’t go out. But when I was there it was apparent to me that people had their husbands and their children didn’t have to do what I had to do. And, you know, that does make you feel sort of really angry. 
 

Alice tries not to be angry about the situation she is in because, she says, anger ‘eats you up.’

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Alice tries not to be angry about the situation she is in because, she says, anger ‘eats you up.’

Age at interview: 35
Sex: Female
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I do feel a bit, well, I do feel a bit angry. I try not to be angry about what’s happened to him so much. I think I feel anger on a very subconscious level, which comes out in other ways, but it’s very easy to feel angry and I try with all my heart just to focus on what we’ve learnt, how it’s united us, all the kind of positive things. How it’s how, he’s found all this strength as a person that I don’t think he had when he was well. How it’s brought his family together. How he’s perhaps lived a richer life, knowing that it’s a shorter life. Because the anger just eats you, it eats you up.
Some people talked about feeling guilty that they didn’t do enough to help their relative with MS even when, like Anita, they were actually doing a lot. Carole felt guilty that she was relieved when her mum died.
 

Kay visits her brother several times a week but sometimes feels she doesn’t go often enough.

Kay visits her brother several times a week but sometimes feels she doesn’t go often enough.

Age at interview: 38
Sex: Female
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But, yes, there’s eternal guilt for feeling that you can’t do more, even though people say, “I couldn’t do what you’ve done” and things. But I think, “Well, you, I bet you could. They’re, they’re, you know, they’re a family member.” But then I, you know, I go and visit my brother as often as I go, two or three times a week, and I walk past rooms and I, some, I’ve never seen people visiting in some people’s rooms. And I wonder, “Does anybody go to these people? Do they have family? Do they have friends?” you know. And, you know, when you feel guilty because you’ve only been twice in a week, and then you think, “Actually, maybe some of these people never get a visitor or very rarely get a visitor. So maybe it’s not as bad as, you know, you think you are.” But I think there’s always guilt, yes.
Experiencing low mood or depression at times is quite common both for people with MS and family members. 

Sometimes mood changes may be comparatively mild: Anthony said that MS ‘can really get both of us down;’ Eric also said that ‘it gets you down sometimes’ because ‘the demands are a bit heavy.’ Morris said, ‘It’s very emotional, but you just keep going’. But depressive moods may go deeper - Anita talked about being in some ‘dark places’-and sometimes people may need medication or other psychiatric help. Dealing with anger towards the person can be hard, as Dave describes. Sometimes he has to leave the room for a few minutes to calm down.
 

Chez thinks that depression is more likely to happen in the carer than the person with MS. She has had depression for the last seven years.

Chez thinks that depression is more likely to happen in the carer than the person with MS. She has had depression for the last seven years.

Age at interview: 42
Sex: Female
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The depression side of it doesn’t seem to have affected [name] that much. It seems to have affected me more than it has him. I think a lot of that is caused by I’m the person that is having to deal with the day to day things, anything that’s stressful to my partner I can’t talk to him about because I don’t want him to get stressed out about it. It could be money issues, it could be housing issues, it could be absolutely anything. And I can’t talk to him as I would normally do to my partner because I have to think is how is he going to react with that. And one thing that I have noticed with MS and with long term relationships is that you do have to adjust accordingly with your partner and with the, the way that you behave towards your partner My partner has a, a way of going into a rage. I can talk about some things very, very simple, day to day and he will go into a rage about it. I’ve literally got to walk away from him for a couple of minutes and then go back and say, “Well, what was that all about?” That is one thing that has been recent in coming. But the depression side I would say is more on the caring side rather than the, the actual person who has MS. I’ve suffered depression for about seven years now, so I don’t mind admitting it. It’s just one of those things. I think dealing with a person on a day to day basis with MS is very, very hard and you’ve got to have a strong will to be able to cope with it. I’ve seen so many of our friends within our group and outside of our group that have had MS and their relationships have fallen apart. And it can be through depression, it can be through the argumentative part of the relationship where the person who has MS will just blow and basically have an argument about something so simple. It can be as simple as opening a bag of crisps and the person can’t open the bag of crisps as they want to and they get so enraged by it that they just make an argument about something so simple. And when you’re dealing with that on a day to day basis it can become very, very disheartening to the person who is dealing with that person. Being away from my partner has helped a bit and it has caused me to sort of take a step back and look and see the relationship for what it is now. And it has helped me look after myself a little bit more.
 

Dave talks about having to try to cheer up his wife when she is depressed, while being on anti-depressant medication himself.

Dave talks about having to try to cheer up his wife when she is depressed, while being on anti-depressant medication himself.

Age at interview: 73
Sex: Male
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My emotional state is quite bad, I’m on tranquilisers, sorry, anti depressants, anti depressants, very heavy dose, so that I can maintain a relatively nice median level and not end up shouting and jumping up and down and doing things like that. So nicely drugged, you know, things like that.

Do those have any unwanted effects on you?

They can have problems with erectile dysfunction in men they can flatten your life but then since you’re trying to maintain a medium life, dull grey is perhaps not too bad [laughter] you settle for second best as a carer.

If I heard you right earlier on you talked about depression in the person with MS being, being one feature of life and your role being to be the cheerer, how are you enabled to fulfil that role given your mood changes?

Normally, as a carer they come first so you are, your needs are secondary. And sometimes you don’t, well you don’t let yourself get into that, you try and buck up. On odd occasions one’s gone out and I’ve gone on the computer rather than carry on shouting [laughter] You do shout, it’s more frustration, it’s not frustration with the person it’s frustration with the situation, the disease, with yourself. I just go in the next room, spend five or ten minutes and come back. And also when she’s fallen down, tends to just lay there and doesn’t cooperate and try and get up, you say, ‘Oh, I’ve got to get out,’ otherwise it descends into physical violence; you don’t want to go down that road. But it’s one of the roads that, unfortunately, some carers do find themselves in this situation. So your mental state, your emotional state and your physical state, you’re not very good. Six out of ten’s a good day.
Other people talked about not feeling depressed. Emma said she definitely wasn’t depressed, though she would like some psychological support, and Paul Y also said he doesn’t ‘easily get depressed,’ partly because he tries not to ‘reflect too deeply on things.’ 

People also talked about how they were affected by their relative’s emotions. Alice said her friend was ‘strangely content,’ in a very advanced stage of MS, whereas before he had MS he was more ‘troubled.’ John Z is comforted that his wife, also in an advanced stage of the disease, doesn’t appear to be in distress. However, Anita said she felt ‘MS paralysed me, in a way’, and that she had to absorb or ‘buffer’ all her mother’s own emotions. Episodes of anger, frustration and depression are common experiences, as Tony and Betty described:
 

Tony was depressed at one point but now he has got a routine, and a support network, he says he has ‘got past that stage.’

Tony was depressed at one point but now he has got a routine, and a support network, he says he has ‘got past that stage.’

Age at interview: 72
Sex: Male
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Carers get depressed as well sometimes.

Yes.

How does, how does that affect you?

I did, I used to get very, very depressed. And, you know, you think about when you’re 55 or 65, you think, “Can I do this after I’m 65? What am I going to do? What am I going to do when the life insurance matures? Am I going to do something silly?” or something like that. And I think these ideas go through your mind.

But for me, after a time, having got the routine sorted out and so forth and, you know, I’ve got past that stage and it’s routine now. And I don’t get worried at all. I don’t get depressed. I’m very lucky. I do, I play golf, I told you, on a Thursday and I’ve got two very good mates who are prepared to adjust their times for example so that I can go and play with them. And they’re part of my support network, if you like, you know. So it’s doing something about it. It’s thinking about it. It’s not just sitting back and just bemoaning your fate, I think. It might sound, I don’t know, probably, it’s not meant to sound self righteous. It’s meant to sound that, “This is in my interests to do this. This is for me. It isn’t for anybody else. This is good for me.” That’s the way I see it.
 

Betty was frightened when her partner took his anger and depression out on physical objects in the house.

Betty was frightened when her partner took his anger and depression out on physical objects in the house.

Age at interview: 58
Sex: Female
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Like I say, it was just a backache but, unfortunately, that is when the depression started coming in. Literally, I would go out to do something interesting (irony implied) like shopping and I’d come back and he’d got very angry and he’d smashed up furniture. And it got to the point when I was, literally, getting in touch with his consultant every solitary day. And it was frightening for me. And, in the end, I actually sent his consultant a list. It was an A4 list of everything he had smashed up. He started with cups, plates then he got onto furniture, came home one day there was a bonfire in the back garden. This was our kitchen table and kitchen chairs; he’d smashed them up in anger. That was when I was really frightened. The consultant said, ‘No, needs help, psychiatrist, you know, we’ve got to sort this out.’ But he, the consultant, was more concerned my partner was going to do damage to me. And I thought, ‘No, it’s not me he’s taking this out on, it’s everything else.’
Some people had noticed problems with memory and thinking in their relative. Not everyone who has MS will experience this but mild difficulties are common. For example, many people with MS can find it harder to remember information, follow conversations or think things through.

John X, Jeff, Kate, Alice, Kay Z and Chez all talked about their partner or other relative having short-term memory problems. Sometimes the person themselves didn’t think they had a problem. Relatives thought it was important not to blame the person when they forgot things, but to realise it was part of their illness and so keep their frustrations to themselves. Kate said, ‘I’m no saint, and I do think, “For goodness sake, can’t you remember that?” But it’s really not fair to say that to him.’
 

John’s wife sometimes forgets things. She makes sure to write down what she needs to remember, as one way of fighting the disease.

John’s wife sometimes forgets things. She makes sure to write down what she needs to remember, as one way of fighting the disease.

Age at interview: 63
Sex: Male
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But I think you can, particularly as the stages get more and more intense, if you’re not fighting them and I think you can give up very easily. And my wife fights them.

Especially she’s now found that she’s getting- memory problems. Says he, trying to remember the words. She finds it difficult always to remember exactly what’s been organised and what hasn’t been organised and we keep diaries of everything written down in ink very carefully and important things are written on notepaper and stuck on the fridge. 

For instance, she has an injection twice a week, which I suppose, I said she didn’t have anything for her MS. She has to have a B12 injection twice a week, because that seems to keep her moving more fluently. And, and we went along. I took her along to the injection, I think it was Monday morning for 9.30 and apparently she’d made an appointment for 8.30. Well she wouldn’t normally have considered an 8.30 appointment because it takes a good hour to get up and get ready and get dressed and get herself together enough to go out through the door. And certainly wouldn’t have considered an 8.30 appointment if she’d been thinking straight, but she obviously hadn’t, because she’d written 9.30 in her diary. And I’m sure that the computer was right of course at the [laughs] at the GP’s. 

But that’s the sort of thing now that’s beginning to be a problem. Its forgetting quite important things at times, which is why it’s all written down, but now there’s beginning to be a problem with actually what’s written down not necessarily being right.
Other changes included loss of concentration and being less able to cope with information. Eric’s wife finds it difficult to follow conversation if she is with a group of people. In advanced stages of MS some people sometimes behave in ways that can cause embarrassment or discomfort to people around them.
 

Kay’s brother used to phone and email celebrities to ask them to pay for his treatment. She says this was difficult to manage.

Kay’s brother used to phone and email celebrities to ask them to pay for his treatment. She says this was difficult to manage.

Age at interview: 38
Sex: Female
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And then dealing with the changes in his personality. Even though my brother still is a cheeky chappy and, you know, as much as he can communicate he’ll always, you know, have a joke and, and be silly and, and wink at people, he has, he has changed quite a lot. He used to be quite hopeful about being able to walk again and constantly looking for, for ways to try and do that. Hence going for stem cell treatment in 2006. 

But the last year or so he’s become much more, I don’t know whether the word is institutionalised, or whether he just doesn’t think about the possibility of that any more, and I wonder whether he’s lost all the hope. At the same time the things that he used to do to try and to contact, he’d send emails to famous people asking them for money, all kinds of behaviour, phoning up people asking, asking them to help pay for treatment to help him walk again. And it was, it was quite difficult to manage.
Patience tells people they should try to help her husband, rather than judging him, when his behaviour is ‘challenging.’ 

(Also see ‘Reactions to an MS diagnosis’).

Last reviewed March 2020.
Last updated July 2018.

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