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’:
Ann suggests focusing on the positive and getting information from reliable sources. The most important thing is how the person with MS wants to deal with it, because it is their diagnosis.
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Ann suggests focusing on the positive and getting information from reliable sources. The most important thing is how the person with MS wants to deal with it, because it is their diagnosis.
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Crikey it’s very hard because I have a particular way of coping with things and my daughter is different from anybody else’s daughter or son. I would say focus on what you can do that’s positive, find out as much information as you can but make sure you’re getting that information from a reliable scientific source or from close friends and family whose opinions you value and who’s judgements you value. Try not to get sucked into some of the things online because I know we all do, we all go on line and type in, in Google but try not get sucked in and if there is anything that comes up that you think oh I’m not sure about that, make a note of it and check it over with your MS nurse if you’ve got one or your GP if you’ve got a good GP, our GP’s were brilliant as well very, very sympathetic, known my daughter since she was a baby and everything so I would say that’s how to go with that and let your family and friends sort of support you. But I think you have to keep that front as well how does your family member want to deal with the issue and you come after that, your needs come after that. It’s about supporting them in the way that they want you to do it. It’s their diagnosis, it has an impact on everybody else but it’s got to be about what they need to support them. And again that would depend on their age and the circumstances. But I think that’s it, yeah.
Robin says it is vital to get information about resources that can help you. He thinks they are lucky to have much more help than when his wife’s mother had MS 30 years ago.
Robin says it is vital to get information about resources that can help you. He thinks they are lucky to have much more help than when his wife’s mother had MS 30 years ago.
Christine says she has never felt alone in dealing with MS because there are many sources of information and help.
Christine says she has never felt alone in dealing with MS because there are many sources of information and help.
A GP thinks that family members need to prioritise their health and emotional needs more and that health professionals need to do more to support them.
A GP thinks that family members need to prioritise their health and emotional needs more and that health professionals need to do more to support them.
Sex: Female
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.’
Kay has never regretted asking for help, though it can be hard to do when you see yourself as a capable person.
Kay has never regretted asking for help, though it can be hard to do when you see yourself as a capable person.
And ironically, the more capable you are as a person, the harder that becomes to do. But I’ve never regretted it when I have asked for help. Because people actually see it as a compliment that you, you trust them enough to be vulnerable with them, to admit that you need the help.
Like, you know, there was one time, I strained my back because I’d been nursing [name] and, I’d been nursing my husband and I’d overdone it. And so I needed somebody to do the driving for me for a few weeks because I was in too much pain to drive. And the person I asked to do the driving was delighted to be able to help and would have felt dreadful if I hadn’t. So, you know, they really do appreciate you being honest and open, as well as giving yourself time to recover from whatever it was that you needed help with.
MS Specialist Nurse gives some advice to people and their families who are living with MS.
MS Specialist Nurse gives some advice to people and their families who are living with MS.
Sex: Female
Just talk to each other. You know, don’t isolate yourself. Don’t assume that it’s you that’s, you’re the only one that’s living with the MS. Your whole family is living with it. And the, the one thing that I, that I say to many people is, “Be your own best friend.” You know, if you, quite often it’s hard to sort of, to give yourself advice or step outside yourself and be your own best friend. What advice would you give to your best friend, if you’re struggling with the situation. And quite often it’s much easier to do that.
Carole never met another person with MS when she was caring for her mother. She thinks it would have really helped to talk to someone else about how they coped.
Carole never met another person with MS when she was caring for her mother. She thinks it would have really helped to talk to someone else about how they coped.
None of our family, none of our family and friends were poorly at the time and so there was not anyone else to talk to about it and I would, yeah, I think being able, being able to have that opportunity to talk to someone or to find out how other people have coped is, would have been so much help for me at the time. It would have been so much help for all of us, I think, and so you don’t feel so on your own. You don’t feel so isolated, don’t feel so scared perhaps and then having the opportunity to talk, you know, to talk through your worries as well, rather than being made just to cope on your own. It was yeah, it’s yeah, it really would have helped so much.
Alice says that she and her friend have surpassed themselves in what they thought they could cope with.
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Alice says that she and her friend have surpassed themselves in what they thought they could cope with.
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I’d say it’s just getting that fine balance between kind of not being scared by the future but living your life to the full. So, you know, with any diagnosis of MS you don’t quite know the course the disease is going to take and you don’t want to necessarily be living with a shadow of a shortened life expectancy or very profound disability. But, at the same time, you have got to be quite realistic that it might happen and to not put off things that you want to do, and that might be having children or thinking about you know, sperm samples and things like that for the future, with all sorts of things, kind of embrace the legal ramifications, the living wills, the power of attorney, the directives, have those difficult conversations very early on because you never know when, if you’ll be robbed of speech at any time.
And also, I think the one thing that I’ve learnt more anything is that you do adapt to the most difficult and challenging situations. I think I was a lot more frightened on the first diagnosis. I mean I was absolutely terrified and now life is kind of okay. It’s enormously difficult but it’s okay and we still continue to have fun. You find enjoyment and pleasure in the most extraordinary situations and there are ways of managing extremely kind of complex situations and you do find strength within yourself that you don’t think you will have. You know, as human beings we have this unbelievable ability to adapt and I think that he and maybe I’ve kind of surpassed ourselves in what we thought we were capable of coping with and that goes for I think everyone who’s living with a kind of partner with a terminal condition or a friend or a, I don’t know, or perhaps living with the condition themselves or someone who’s lost a family member, or whatever it is. People, you know, find a way usually to cope.
Mully says you can’t turn the clock back so just ‘do the best you can and don’t be frightened.’
Mully says you can’t turn the clock back so just ‘do the best you can and don’t be frightened.’
Sarah thinks that caring for her mum has given her a different outlook on life and that you can get a lot more out of caring than you have to give.
Sarah thinks that caring for her mum has given her a different outlook on life and that you can get a lot more out of caring than you have to give.
And I just, I wouldn’t change it for anything, I really wouldn’t. I genuinely mean that. Like a lot of people say, “Oh of course you would”, you know, “you wouldn’t say that with your mum or ...” But, no, it’s made me a better person. I’m sure it has. It’s made me, mum and dad closer. And it’s meant the friendships that I’ve developed are more meaningful. It’s meant that the career path I’ve gone down is more substantial. Like I wouldn’t have had any idea otherwise, I’m sure I wouldn’t. And it just, it’s just given me a completely different outlook on life to what I think I would have had. So I certainly think that you get a lot more out of it than you necessarily have to give.
Ray advised learning to ‘understand the illness and work with it.’
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Ray advised learning to ‘understand the illness and work with it.’
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‘Be prepared for the worst,’ Dave said, ‘rejoice when you get something better.’
Last reviewed March 2020.
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