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.
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.
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.
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.
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.
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.
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.’
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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.
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.
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.
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.
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.’
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.
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.
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.
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.
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.
(Also see ‘Reactions to an MS diagnosis’).
Last reviewed March 2020.
Last updated July 2018.
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