Multiple Sclerosis: friends & family experiences
Normality and optimism with MS
For anyone diagnosed with Multiple Sclerosis (MS) and their family members, there will be some uncertainty about how the condition will affect their lives, and how far they will be able to keep up their usual activities. For some people, life with MS may not bring about huge changes, and people talked to us about how important they felt it was to keep life as normal as possible. As Ian said, “We live quite a normal life, apart from she can’t move around like she used to.” But some people’s lives had changed more significantly and they realised that, at the same time as trying to keep things normal, they had adapted over time to create something they called a ‘new normal.’ Kate describes treating the abnormal as if it’s normal; that is, a life which is ‘normal to us, but probably not to everybody.’ Kay Z notices when on holiday that, ‘It’s only when you step out of your normal routine, out of your normal environment, that you suddenly realise how different your normal is.”
One thing people need to think about is how far they want to mix with other people with the condition. For both the individual and their family members, it can be frightening or depressing to see people whose symptoms have progressed, and often people are worried about being labelled as ‘a person with MS’ or being defined by the condition.
Louise wanted to carry on a normal family life. Neither she nor her husband wanted to mix with other people who had MS.
Louise wanted to carry on a normal family life. Neither she nor her husband wanted to mix with other people who had MS.
Yeah and when we and when you go to hospital, for instance, on various medical appointments throughout, say, two or three times a year and then you are with a lot of people who, you know, at the MS clinic or whatever, I know he always comes up and says, “Oh, wasn’t that depressing.” I don’t mind. I talk to people and, you know, but I know he finds it, he just he also doesn’t want to be, I suppose, someone with MS. He’d rather he’d rather just be him and at home with his family and, yeah, and try and carry on pretty much. I mean all of us have tried to carry on as much as we have been able to as we would have done, you know. We haven’t wanted to move. You know, my parents spend the whole time saying we should go and buy a bungalow somewhere but our children have gone to the local schools, we’ve got loads of local friends, we’ve got a good GP, near where I work. So why would we want to move? So instead we’ve got to, you know, try and sort out our house to sort of fit, you know, Chris’ needs more and make it more accessible.
At the same time, talking to others who have experience of the condition can offer good practical advice and it can be reassuring to talk to others who understand how you feel (see summaries in the section - Finding and giving support). Sarah sees the positive side of interacting with others and advises people to try to get past the initial worry. “I think that people are too scared, especially when you’re newly diagnosed, to go up there [therapy centre], because if they see one wheelchair, then they see that as their wheelchair in seven years’ time and things like that. And I think it’s important that they try and get past that. I think that’s the worst stage, trying to get past the initial shock obviously, the initial worry. And actually start taking part in things. Because there’s not many people with MS I know that will actually go out to those things, that aren’t positive.”
For some people, being normal meant trying to carry on as before, sometimes ignoring or rejecting other people’s views of what you could or couldn’t do. Louise was resisting pressure from her parents to move from the house where she had brought up her family and which still suited their lives in many ways. Several people carried on planning their holidays up to two years in advance. When Nick spoke to his brother on the phone it often seemed as though everything was normal in their lives.
Although she thinks having MS is a ‘hard and lonely road,’ Louise tries to focus on the positive things in her son’s life.
Although she thinks having MS is a ‘hard and lonely road,’ Louise tries to focus on the positive things in her son’s life.
Keeping things normal was part of a positive attitude and optimistic outlook that many people we spoke to seemed to have about living with MS. People talked about having a ‘can do attitude,’ and a ‘fighting spirit.’ They found positive aspects to life with MS, even where there were huge difficulties, either because they saw themselves as optimistic by nature or because they chose to be positive.
Paul wants to take a positive attitude. He realises that limitations will come as MS progresses but he makes the most of their life as it is now.
Paul wants to take a positive attitude. He realises that limitations will come as MS progresses but he makes the most of their life as it is now.
Norma thinks she was born to be a happy person. Both her sons’ were diagnosed with MS but their acceptance of their condition helped her, however burdened she felt, to ‘keep on uplifting them.’
Norma thinks she was born to be a happy person. Both her sons’ were diagnosed with MS but their acceptance of their condition helped her, however burdened she felt, to ‘keep on uplifting them.’
Sarah thinks being optimistic makes life less of a struggle and that people shouldn’t think of MS as a ‘death sentence.’
Sarah thinks being optimistic makes life less of a struggle and that people shouldn’t think of MS as a ‘death sentence.’
Ray: Hmm.
Sarah: They seem to think that, “Oh, I’ve got MS, that’s it. Give up. No point. I, you know, five years time I’m going to bed-ridden, can’t feed myself”, this that and the other. Because they’ve seen the worst in people a lot of the time. But it, it is, it’s not, it’s not like that. The majority of the time, like I know people that have had it for as long as mum, and the same, better, worse conditions, it doesn’t matter how long you’ve had it, it’s just basically luck whether, and, and optimism as well. Looking at the positives because if you’re negative of course you’re going to struggle more. Because you’re going to say, “Oh I can’t do that”, so you’re not going to try. Whereas if you’re optimistic and you do try I might say, “oh well, that failed but I know I can do this so that doesn’t matter”. Like mum with the stair lift, you know, it’s, I have to have a stair lift now because I’m getting exhausted doing the stairs but on the other hand I can still do them, just not all the time.
Anita’s teenage life caring for her mum was very challenging, but she has found positive ways to learn from her experiences. It has made her appreciate her own health and think what really matters in life.
Anita’s teenage life caring for her mum was very challenging, but she has found positive ways to learn from her experiences. It has made her appreciate her own health and think what really matters in life.
So, the positives are that it, it makes you true to who you are actually and it makes you really realise what’s fundamental in life and what you can’t take for granted. But, yeah, I would say that it does have a profound impact on, on how you feel.
Maintaining a positive attitude may not always be easy. Family members often talked about wanting to keep positive for the sake of the person with MS as well as for themselves. Christine explains that she thinks her boyfriend is sometimes ‘too accepting’ of limitations to what he can do, whereas she is more optimistic and sometimes thinks ‘he needs a good kick!’ David pointed out that you have to mix positivity with some realism. Paul Z said that encouraging his wife to think she could still keep mobile and do lots of things was important to him; but this had almost backfired when trying to claim disability benefits which are judged on how severely disabled the person is. Others admired their relative’s positive outlook but sometimes found it hard to feel the same. Chez worried that her husband was so determined to remain normal and not accept MS that he was not dealing with the diagnosis.
There were times when people resented the ways in which MS had changed their lives and deprived them of normality. John wanted more acknowledgement of what he did for his wife and what he had to sacrifice. Chez said that ‘fighting’ for services can make you ill and that sometimes she feels like ‘I can’t do it anymore. I can’t make any more moves. I feel as if I’m at the end of my tether. And I get very, very angry sometimes.’ But, she said, ‘If you want to achieve something in life you’ve got to keep going.’
John resented the changes in his life caused by his wife’s MS. He just wanted, ‘a normal life, like everybody else.’
John resented the changes in his life caused by his wife’s MS. He just wanted, ‘a normal life, like everybody else.’
Eric and his wife both feel frustrated that they can’t have a normal physical relationship anymore. They have to approach things differently now.
Eric and his wife both feel frustrated that they can’t have a normal physical relationship anymore. They have to approach things differently now.
As regards that, it’s virtually non-existent. As my wife has deteriorated it’s been more and more difficult to have any physical relationship. And it’s not so easy to give somebody a cuddle or anything like that quite the same when they’re in a wheelchair. It can be done but it’s not quite the same. So, yes, it’s nothing like it was before. And my wife understands that to a degree, because these are limitations of circumstances.
And how do you feel about it?
I feel deprived. Well, my wife feels deprived as well. Again I feel frustrated in the sense you, you can’t have a normal relationship. A normal couple do things together and, it’s just natural to do these sort of things. Where now you’ve just got to cope with not being able to do it. But you just do as much as you can when you can. But it, this is why I say sort of like the caring part, being a carer is sort of 75 per cent and the husband side is 25 per cent. And, yes, yes, it’s a big, it’s a big chunk of your lifestyle taken out and you’ve got no control over it. Which happens to, with a lot of things, you know, you’ve got no control over that. And yet you could have if things were normal. It’s just you have to approach things totally differently and think of ways in which you can get something out of it. Is that done sufficiently?
Sometimes people saw being optimistic as a way of coping with a hard life. For example, Patience said that she made a choice to be positive and to persevere in looking after her husband: “It’s ok until it knocks you down, down, down, then you say to yourself, ‘You will either stay there or pick yourself up.’ It’s a choice. To me, I think I made the right choice to get myself up because if I hadn’t, I don’t think my husband would be alive by now”.
See also ‘Adaptations, aids & equipment for MS’, ‘Family life’, ‘Being a 'carer’' and ‘Maintaining a social life with MS’
Last reviewed June 2026.
Last updated July 2018.
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