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.
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.
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.
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.’
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 July 2018.
Last updated July 2018.
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