Multiple Sclerosis: friends & family experiences

Messages to carers, relatives and friends

We asked people if they had any messages or advice for others living alongside a relative or friend with Multiple Sclerosis (MS). Some people said it was difficult to give advice because it depends on the level of disability the person with MS has and because people have their own particular ways of approaching it. Ann said it’s important to ‘support them in the way they want you to’:
A lot of people gave very clear messages about what they thought was important. Many advised learning as much as possible about MS and getting information about what help or support is available.
Several people stressed the importance of having a life of your own and looking after yourself, so that you could continue to support the person with MS.
Eric added that you shouldn’t forget that your relative with MS is an individual and also needs to have a life of their own. Several people said that enabling their relative or friend to live life as fully as possible was very important.

Many people said, ‘You’re not alone’ and talked about the importance of asking for help, whether from friends, neighbours, charities or statutory services. The key messages here were, ‘Don’t be frightened to ask for help’ and ‘Be persistent.’
Several people said it was important to keep talking; to your partner with MS, to other people who share your experience and to health and social care professionals.
Some people recommended trying to hold on to particular attitudes: for example, keeping a sense of humour, trying not to worry or feel guilty about having time to yourself. Louise Z, whose son has MS, advises people not to worry too much about the future but to take one day at a time. A key message here was to keep positive and not give up hope. Alice tried to keep in this positive frame of mind, even though her friend is severely disabled, because she believes that ‘you adapt to the most difficult situations:’
People acknowledged that it can be very hard living alongside someone with MS, depending partly on what type of MS they have and on their level of disability. Sarah Z said it will ‘try your resources to the limit’ and she can’t imagine how people cope without a network of friends. Mike acknowledged that looking after his partner was ‘sometimes a thankless task’, but it was important to remember that she did appreciate all that he did for her. Sarah, a young carer said, it was ‘not as bleak as people think’:
Several people offered practical advice such as buying specialist equipment at the right time, getting legal advice on funding for care home fees, or just the need to plan everyday activities (see ‘Being a ‘carer’’, ‘Adaptations, aids and equipment for MS’ and ‘Getting help with care needs for MS’).

‘Be prepared for the worst,’ Dave said, ‘rejoice when you get something better.’

Last reviewed July 2018.

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