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Multiple Sclerosis: friends & family experiences

Family life and MS

When a person is diagnosed with Multiple Sclerosis (MS), this has implications not just for them individually, but also for other members of the family. Depending on each person’s situation, this may include parents, children and siblings, as well as relationships with a partner.

Some people saw the strength of their family as helpful in living with MS. For Anthony, living with his wife and children, MS is part and parcel of family life. Jean describes her family as close but thinks that one of her sons, who had left home when his brother was diagnosed, has always been ‘on the outside looking in’ to some extent. Sarah and Nick thought that MS had brought their respective families closer together, though for Nick it is not a dominant factor in their relationship because he only sees his brother every few months. John X’s young children ‘all pulled together’, during the early years of their mum’s MS and Paul Z said, of his adult children, that ‘they live it as much as we live it.’
 

Everything in Anthony’s family life is planned around his wife’s MS, but they all ‘just manage’ and ‘get on with it.’ He feels blessed to have such a close family.

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Age at interview: 43
Sex: Male
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I wonder if you could say a bit about the impact on your family as a whole?

So often we have to plan what we do and how we do it around what my wife can manage. The kids are very good. They are aware that that mum isn’t capable of doing things. They see it every day, obviously, but, at the same time, they give emotional support. They’re very, very good at that, through necessity really because for all her wish to get on as normal and appear normal to everybody else as much as she can, within our family unit of course, you see somebody when they’re at their worst. You see them when they can barely get from the bedroom to the bathroom and... they’ve seen my wife when she’s had a bad fall. And they know what to do. They know to help they should ring me as well if I’m not there.

But... I think, if suddenly my wife didn’t have MS tomorrow, I think it’d be a shock to us how much we now have to plan round... what we do and where we go and how we do it and how much time things are going to take as well. So, if my wife was cured tomorrow we would suddenly realise, I think, how much we do without even thinking about it. Little things like bringing full plates of, dinner plates in from the kitchen to the table for us to eat and helping my wife move around. 

Shared housework, my daughter particularly is fantastic at both finding things that she needs to do and from vacuuming to cooking to anything like that. I guess with them being young, as well, they just adapt to it. It’s only when they compare their mum to other mums and realise that their mum can’t do the same things that they probably notice it more but you just manage. You just get on with it. I think that’s the main thing. As a family you, I mean we’re blessed because we have got a close family unit. I wouldn’t like to think what it’s like for somebody who hasn’t but right from the very basic level of just looking out for her, making sure that things aren’t in the way for her to trip over because she can’t lift her left leg very high to making sure that the toilet seat is down [laughs].
 

Jean’s son has had MS for 25 years and lives independently. Although the family have their, ‘moments when we argue,’ she thinks of them as close to each other.

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Age at interview: 71
Sex: Female
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Could you just talk a little bit more about the importance of family? You’ve mentioned that a number of times. Just reflect on that a bit more?

Well, family have been there right from the start and all grown with it. He, my son’s had the illness 25 years now and so, and my daughter was a teenager. Two were teenagers and two were married. I’ve got four children altogether and they have they’ve all been in…We’re very close because we all live here in the same town so they’ve had a bearing on how we’ve dealt with my son’s illness. 

I don’t know whether I’m mistaken or not, but I feel in a way one member of my family has probably felt on the outside looking in, maybe he... felt a little bit neglected may be. I don’t know. He was already married at the time of my son’s diagnosis and he hasn’t played an active, he’s there and he would be there to listen and support, but he’s not had a very active role. And I just wonder if that’s because he’s felt a little bit neglected because we’ve focussed on one member of our family who was ill and who needed attention and has needed more attention from time to time. But that, maybe I’m reading the wrong signs. I don’t know, but I’ve felt that at times. 

But no, we’re close. We see each other regularly. We meet for a coffee anyway, every Saturday, all of us. In fact Marks and Spencers are moving to Leeds Road and I’m wondering if it’s because of us [laughs]. But no, we meet regularly for coffee so… We’re a close family. That’s apart from other things, and we go out for meals. We were out for a meal last night. So I feel we’re there for, for my son and six grandchildren are all happily involved with the family and are aware of [name] problems too. 

So yes, I mean, when [name] was first diagnosed, grandparents were still around. Didn’t know what MS was, and very shocked, very frightened and felt inadequate. I remember my Father was very sorry. But just very sad because they didn’t know more about it and although they were there for us all, they felt their lack of knowledge. And you sort of tried to protect them in a way and not tell them too much or what could be down the line, although no one was to know. We didn’t know how the illness would progress. So there was no point in frightening them or talking too much about it, but they too played their part in supporting me and the other children really. So, yes, I feel we’re a close family. 

We have our moments when we argue and because he’s so stubborn [laughs] we could strangle him at times, but I think his stubbornness has made him independent and kept him independent. Yes, he’s a great member of our family.
 

Nick thinks his brother’s MS has brought the family closer together. They have all reacted differently but they share a common concern for his welfare.

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Age at interview: 30
Sex: Male
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It’s probably brought us closer together I suppose because it’s obviously a common factor I suppose that it’s a, it’s a concern for everyone in the family about my brother’s welfare. So but it obviously affects different people different ways and dad’s quite emotional. He probably sort of took it hardest whereas and he still gets sort of upset about it I suppose but then my mum’s more was more rational about it and just wanted to know everything about it and what could be done and how she could sort of help him I suppose. But also I think we’ve got a good sort of strong family unit anyway, so I think that helps. So he’s got quite a good support network anyway with the family and then also his friends as well. So but yeah, I was trying will try and sort of help as much as possible and if he needs help but. 

Do you talk about it to each other? You all live together at the moment and do you talk about it?

Yeah, I’m back home at the moment so yeah, we’ll have a chat about it and sort of about how he’s getting on and stuff and but a lot of the time it’ll be part of the conversation with other general stuff that that’s going on in his life. It’s not it’s not really like a dominating factor. It’s always sort of there so we might chat about his treatment but it’ll be in the same conversation about what he’s doing with his art or anything else that that’s happened at that time I suppose. Yeah, I suppose the most difficult thing is not being able to visit as much as much as we’d like but. 

Do you ever imagine what it would be like if he was down the road or even in the same town?

Yeah, I mean it’d be good, it would be nice to see him more and spend more time with him but when he’s down sort of see each other and spend time together. But yeah, I suppose it’s, it’s sort of thinking what it might be like if he hadn’t of had the disease and what he’d have been able to do that he sort of can’t do now but I suppose you can’t really think about that. You’ve just sort of get got to get on with it and sort of how it is I suppose. But I think we’re sort of relatively happy with the way things are I suppose and it’s good to sort of speak to him regularly and sort of see him every few months. 
MS is most commonly diagnosed between the ages of 20 and 40, a time of life when people may have children at home. People talked to us about the varying effects on children and family relationships. From the children’s perspective, having a parent with MS can mean they have to take on some extra household or caring tasks. Even if parents try to keep life as normal as possible for them, they may feel they miss out on some aspects of family life they can see their friends enjoying. Nicola remembers finding it embarrassing that her mum was in a wheelchair at school parents’ evenings, and wishing they could go on shopping trips together like other mothers and daughters. Even giving each other a hug was more difficult with a wheelchair. Sarah Z feels sad that her husband who found it difficult going out before he died was never able to hear their son play in school concerts. 

Living with MS can also cause tension between the parents, which in turn affects the children. Morris talks about a strained family life, during his teenage years. His mother is separated from his father but still visits most days and helps care for him. Over time, and with more involvement in caring, Morris thinks his relationship with his dad has grown stronger. John, on the other hand, said that his young adult children still, ‘can’t cope’ with the fact that their mum has MS.
 

John worries about how their mother’s MS has affected his children, but he realises why it is difficult for them to cope with the situation and for them to understand what he is going through.

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Age at interview: 55
Sex: Male
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And I worry about the children’s future because it has affected them a little bit in a way. Sometimes they don’t want to help and are being rude to their mother. It’s not because they are rude people, it’s because of the situation, they can’t cope with it. I cope with it because I’m more, I’m more, I’ve been through it many years. They’re only just about starting to understand the difficulties of having a disabled parent and what it involves, what the demands of a disabled parent are. And you don’t expect somebody, like I have for instance, my daughter was going to university, to make her do things like that for my wife, she’s got her studies to do, I don’t want, personally I don’t want to distract her from her studies. I want her to have a, to concentrate on her studies, finish university and get on with her life. They do help, but not at, at the pace that my wife demands or she is asking. It’s difficult for them to, to comprehend what I’m going through and to understand that it’s very difficult for me. And I don’t expect them to understand, I don’t expect anybody else to understand unless you live with the problem yourself.
 

Morris is from a big family. As his older brothers and sisters left home ‘it was left to me to deal with my dad.’ The relationship was strained during his teenage years but has become closer.

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Age at interview: 35
Sex: Male
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And, as I was saying, that my relationship with my dad hasn’t always been the best, very distant. He was out most of the time. Even after his diagnosis he used to still work in a pub and we used to go to school he used to be in bed, we used to come home from school he’d be at work, he’d come home from work, we’d be in bed. And that was a vicious circle and we used to just get to see him maybe on a Saturday or a Sunday. So, I didn’t have the best relationship. 

But then the doctors, he, he could see his health deteriorate over the years and became more prevalent when I was in my teens and I started to notice the decline. The relationship got worse between me and my dad because he was grumpy so to speak, moods, you know, and he just, he seemed to be annoyed all the time. So when we want to ask him questions you wouldn’t really get an answer you would get sort of ooohhhh.

So the relationship between me and my dad got worse. And the thing for me is that I was born into a house with four children. I had one sister and three brothers so we had kind of a big family back then but as time goes on family members move on and they become married or have their own family and they separate and go off and do their own things. So, as a teenager dealing with my dad bearing in mind that my elder brothers kind of like one of my brothers ended up meeting somebody, having a kid, my sister went away got married and she had two kids, my other two brothers moved down south so basically it was left with me to kind of like deal with my dad. Then I had a younger brother who between me and him I kind of like became his dad, yes, because there’s a seven year gap so you can imagine me looking after him as a young un. 
Anita and Carole talked about a lack of emotional support, and taking on a lot of caring responsibility, as a strong feature of their teenage lives. This damaged their relationship with other family members to some extent. Anita remembers that sometimes she felt the family dog was her best friend; talking to the dog helped make ‘the depression and the blackness and the awfulness of MS a little bit lighter’. Later on, she found herself making care decisions for two generations, when her grandmother developed dementia and her mother with MS was unable to help.
 

In Carole’s family, when she was a teenager, nobody talked about her mum’s MS. It was like ‘everyone was in their own little world.’

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Age at interview: 53
Sex: Female
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It stopped all relationship between our parents. They were very separate. They... they didn’t talk to each other. I got the impression that they didn’t love each other anymore. I mean, whether they did before, I don’t know [laughs]. But then I, you know, I got the impression there was no closeness, really. I mean, our dad was a really good carer in that he, when she was in hospital he went to visit her every single day. But he worked long hours, he had to do two jobs because she wasn’t working and so bringing up, you know, three daughters and, him and our mum and he wasn’t well paid. He had a very poorly paid job and so he had, two jobs to help with that. 

So, he was shattered when he came in and all, he’d come in and he’d sit down in the chair and fall asleep [laughs]. And then he’d cook the meals and clean and stuff. I mean we helped, I helped but [sighs] yeah, I felt our parents didn’t really talk to each other at all about things and certainly with that. And the house was very, very quiet. You know, there wasn’t sort of laughter going on and there wasn’t chat going on. It was all like everyone in their own little worlds in a way and I never thought of it like that but, yeah, it was. It was like that. So I think it had a huge impact on their relationship. 

And did you reflect on that at the time?

I suppose I mean it did strike me that they didn’t talk to each other and that they weren’t close with each other, yeah I, that did affect me at the time and I did think about that I think it was more that I was thinking of myself really probably and how they didn’t react to us and talk to us about things. So at the time, no, I didn’t really think too much about them, together. It was just that it was, it felt like a very unloving, unloving family, which sounds awful I feel guilty saying that now because they did work very hard for us and they did, you know, try hard. But that emotional support wasn’t there or emotional, not support but, you know, it wasn’t support, emotional feeling wasn’t there with any of us. Between ourselves, everyone was very isolated, yeah. 
 

As a teenager, Anita felt that she was the one who ‘kept everything together’, and kept her mum going.

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Age at interview: 37
Sex: Female
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But, yeah, I felt very alone because you norm, you expect you expect your parents there to sort of be guiding you. And I can remember another memory that really sticks in mind was when I got my GCSE results I went with my friends to the school and everyone was all excited and those who failed were sort of saying, “Oh you know, my parents are going to kill me,” kind of thing. And I went home and put mine in a drawer and nobody even knew that I’d got my results and no-one ever asked what my results were. 

So there’s quite prominent sort of memories like that where I think, you know, your family should be supporting you and nurturing you and that support wasn’t there. And there was no support from anybody sort of saying, you know, no, even within the school itself, within even my friends, you know, there was no, nowhere, no network that would pick up what was sort of happening. And I don’t think I could have even articulated what, it was my experience from quite a young age that it had almost become the norm. So although I would get really upset and I would and I knew it was an unhappy experience I’m not sure that I would have known to, you know, it was kind of almost what I knew.

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 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 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.
Anita and Carole both stress that their experiences were a long time ago and that they hope things would be different for teenagers now. Looking back Carole now feels sorry for her dad, realising he too was going through a hard time.

Even where the underlying family relationships were strong, there could be challenging times. Kay Z talks about her parents’ commitment to looking after her brother in their home after his marriage broke up. But sometimes both she and her mother would have to keep the peace when her brother and her father argued.
 

Family life changed ‘dramatically,’ when Kay’s brother with MS went to live with their parents. Kay wonders if the stress of looking after him, however willingly, contributed to their own ill-health.

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Age at interview: 38
Sex: Female
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It’s quite difficult being the person responsible for their sibling in, in terms of making sure their well-being is catered for. I suppose it’s become a lot more in my world since he moved back home f-, after he moved back home with my parents. Then things became a lot more real, because then it was clear that he was quite disabled and, you know, the family life changed dramatically. My parents were both getting on. And having to have their son come and live with them and for their son to need their support all the time, that was quite difficult, to see the toll it was taking. I mean I know that they wouldn’t have even dreamed of him living anywhere else but, you know, that was quite difficult. 

My mum died in August 2006, which was just over a year after my brother moved back home. She’d had cancer on and off for twenty years. But I think, I don’t know, I’m not a medical professional, but obviously the worry and the stress and the strain of looking after my brother and then the worry about what might happen to my brother when she could no longer look after him in some ways I feel exacerbated her illness and made her decline maybe a bit more rapidly than she might have. 

She was only in her early 60s when she died. She’d been fairly active and, you know, had a very fulfilling life. But the sort of, es-, I suppose the, the last few years of like worrying about her son with his illness and especially the last year or so of taking care of him must have had an impact on her health. And again as my mother declined, my father was running between my mother and my brother making sure both of them had all the support that they could have. Which was quite difficult. And my mother was often the referee in the constant difficulties between my brother and my father sometimes falling out over silly things and my mum trying to keep the peace and tell them to not be so nasty to each other or be s-, having arguments with each other all the time. 

I think my brother, my brother’s, once my, after my father lost my mother I think, you know, he was totally devastated. They, you know, were married for forty years , nearly, and hardly ever a cross word. It was a pretty normal family life. My, my parents both sort of m-, their lives revolved around their children and making sure that we had support and got educated etc. After he lost my mother I think my father kind of lost the will, but I think he carried on for the sake of looking after my brother because I know that for mum’s sake he would have looked after him. And he did look after my brother for as long as he was physically able to, even though he suffered with arthritis and constant pain in his arms and legs, struggled on. How he used to hoist my brother off the bed single-handedly, I don’t know. I’ve done it a few times and it’s hard. Even with somebody else helping you, it’s a hard thing to have to do. But for a man in his mid 70s with ailing health, he just got on with it. And I think you do. You, you just get on with it.

But, and I think also worrying about my brother and what might happen to my brother also meant that my father didn’t have treatment that he maybe should have had. He was diagnosed with prostate cancer in the March before he died less than a year later. They wanted him to go into hospital and have some treatment. He mentioned it to me. I said, “That’s fine. When you need to go I will come, I’ll take time off. You go, you do what you need to.” He then got the doctor to just give him some tablets. Everyone kind of says that prostate cancer is one of those ones that’s quite treatable, and after my father died they said, you know, “It’s quite rare for somebody to be diagnosed and die in less than a year.” But again I, I wonder whether having, the sort of the caring for my brother and the worry about everything around that again may have contributed to my father dying maybe a little bit earlier than he might have if he’d been having a comfortable retirement with no stresses and strains of caring for a disabled son. That’s, you know, things that you think about. 
This is an example of how ‘traditional’ family roles had been changed by MS, as Kay’s parents found themselves responsible again for a grown up child. John S remembers his mother-in-law, then in her 80s, being asked by a social worker whether she could come and do more housework for her daughter. Ian says his mother-in-law has found it distressing to see her adult daughter with MS.

Equally children might find themselves having to act more like parents. As teenagers, Anita and Nicola felt a burden of responsibility towards their mothers which they felt was unusual for adolescents. While children often want to help support a parent who is ill, it can also lead to feelings of isolation and resentment, masking their own feelings behind a ‘brave face’ or even guilt that they could not do enough. Chez explained that one of her two daughters dealt with her father’s MS better as a younger child but has found it harder to cope with as she has got older. She now rarely visits. 

Gender roles were affected too. Bernard, Jeff and Paul Y all talked about taking on responsibility for cooking, willingly but unusually for men in their age group. Anthony sees himself as the person that fixes things in the family – “Don’t worry – Dad will sort it” - and is frustrated that he can’t ‘fix’ MS. John X’s wife with MS kept trying to maintain her role at home of cooking and cleaning and to protect her children from having to do anything. This could cause disagreements when he had got the children helping with tasks which their mother would then tell them they didn’t have to do. 

There could sometimes be tension between siblings. Jean thinks that one of her children may have felt neglected because of the attention given to her son with MS. Anita and Carole both felt isolated from their sisters in their caring roles as teenagers. Anita’s sister had her own problems, but they have become closer since their mother’s death and can now talk to each other about their experiences.
 

Anita is glad to have got closer to her sister. She thinks the kind of isolation she experienced as a teenager could destroy some families.

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Age at interview: 37
Sex: Female
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My sister realises now that I did so much more than actually perhaps she realised at the time. It wasn’t very straight forward because my sister, at the age of 21, had a baby with hydrocephalus and he was very ill so she was somebody without a mother really who didn’t have a very close relationship with her father. She was young and with a very severely handicapped child who actually died last April so she had her own things that she was worrying about. And she, she suffered you know, a lot of, of illness as a result of that really. So the conversations that we’ve had are, she felt that she had just nobody as well so she felt isolation. I felt that I was the only person sort of managing all of this. But I guess the common ground is the isolation really, is that we both knew what it, what it was. I mean, it would destroy some families actually And there were periods of time where my sister wouldn’t see my mum for sort of six, seven weeks at a time. 

Now that, that was a lot because what that meant to me was mum’s seeing someone today that means I can do X or, or Y. And but we have talked about it and we, you know, we’ve worked through that but I would say that, you know, that was another thing that I felt resentful to initially.
In some families, parents talked openly to their children about MS, explaining it gradually, in stages and in language appropriate to their age. David’s and Kay Z’s children have become interested in MS and knowledgeable about it. Some families didn’t talk so much, sometimes because of underlying tensions in the parents’ relationships but sometimes because of previous experiences of MS.
 

Kay’s family was a bit ‘head in the sand’ at first when her brother was diagnosed. She thinks her mother expected the worst because her cousin had died with MS and so didn’t really want to talk about it.

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Age at interview: 38
Sex: Female
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I remember when I found out about that. My mother called me at work to tell me the news. She was very upset because she had a cousin who’d died of MS when he was 28 years old. So she immediately thought of the worst-case scenario. I was obviously upset but didn’t really understand what MS was, what it could mean, and how it might affect my brother and my family as well. Fortunately a member of my work had got some research for me and, and found out a little bit more, got some information from the Internet so I could read about it. 

And then the next time I went up to the Midlands we, we talked about it a little bit, but in that kind of way that families do sometimes, you don’t talk about all, all the detail. And, and because my brother to most intents and purposes seemed quite, quite fine, still his happy, cheeky self, it seemed like, “Is it, is it really something that’s that bad?” So I think heads, head in the sand was probably the situation with our family for some time. I think my mother didn’t really talk about the things that she’d seen with her cousin, so I wasn’t really thinking that it could be such a terrible, terrible thing to have.
Some people talked about difficulty with decisions about whether to have children, or even whether to get married. Emma has become the main breadwinner since her husband’s diagnosis and sees the future financial implications as ‘huge’ if they decide to have children. Ann says her ‘family orientated’ daughter, who is about to get married is worried about how her MS might impact on having her own family:
 

Ann thinks her daughter will want to talk to the MS nurse fairly soon about the best time to think about starting her family.

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Age at interview: 55
Sex: Female
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She’s obviously very, very nervous about the future in terms of she’s a very family orientated young woman she’s getting married in June, which we’re all thrilled about, and I’m pretty certain that she’ll want to start a family if they can and she’s worried about how her MS might impact on that. And when we have talked a little bit about that with the MS nurse I think it’s been a little bit about, ‘Oh, let’s not worry about that yet.’ But actually it’s really important to [name] to know what might happen and, you know, should she delay putting a family or should she have a family when she’s fairly young. So I think that, once we get over the wedding, I think that might be something that she and her fiancé might talk to the MS nurse about and just sort of get some opinions on that.
Overall, many of the people we spoke to talked about having a good family life, living with MS over many years and being able to create a kind of normality that worked for them. As Kate said, ‘We managed quite a normal life, in quite a strange way, I suppose. Well, that became normal to us. It was probably not normal to everybody’. Ian said his children had not been affected by their mother’s MS. Ray and his daughter Sarah both emphasise that MS has brought their family closer together. Several people said that living in a household with MS had made them, and their children, more tolerant and understanding of illness and disability.
 

Kay’s children have ‘grown up with’ their father’s MS and have ‘seen the plusses and minuses.’ They have also learned that, ‘we are not a normal family.’ But Kay thinks they have adapted, and ‘created their own normal.’

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Age at interview: 49
Sex: Female
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I think that MS has a massive effect on the family at large. It’s not just the person who has the condition. And I think this was particularly so when you have a young family. Typically, that is the stage of life that people are going through as they receive their diagnosis. So information about people’s experiences on what and when they shared the facts with their children, how they did that, was very useful. 

Personally, we’ve always found being completely honest and upfront with our children has been the way to go. Just to drip-feed them the amount of detail that they need at the time. You know, starting from, “Oh, Daddy’s brain doesn’t talk completely properly with the rest of his body” you know, very simple, through to my older daughter when she got to sixth form was thinking that she would write an extended paper on MS, because it was something that she really felt she wanted to dig down deep about, find out more. 

So it’s something that they’ve grown up with. And, and they’ve seen the plusses and the minuses, and hopefully have become tolerant of other people who struggle with other diseases and, you know, who, who might have circumstances that impact them more than theirs do. But they’ve also learned that, you know, we are not a normal family. You have to admit that. And, and often you, the human nature is amazing, you adapt and you create your own normal. You really do. And it’s only when you step out of that, out of your normal routine, out of your normal environment that you suddenly realise how different your normal is. 

Typically that would happen to us when we went on holiday, especially if we were on holiday with a group, you know, meeting family from abroad or something like that. You suddenly realise that things that to us are completely second nature and normal are absolutely foreign to most people’s experience. It wouldn’t matter to most people whether the restaurant that you were going to had steps in it. But to us it would make the difference whether we went or we didn’t. Or, that we would book a table at the back of the restaurant rather than overlooking the beach, just so that we didn’t have to avoid the steps. You know, it matters whether the, the toilets are on the same level as the tables in the restaurant or whether you have to get up and down a flight of stairs to get there. And most people don’t have to think like that at all.
 

Sarah believes that ‘family should look after each other.’ She enjoys looking after her mum and thinks that MS has made the family closer.

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Age at interview: 17
Sex: Female
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Ray: Sarah and myself were lucky enough to go down to 10 Downing Street to interview David Cameron with regards young carers. It was a thing that was run by the BBC. It was a young carers’, they had young carers from all sorts of walks of life and basically when Sarah was talking to him about perhaps going to university, you know, I, where’s, where’s the money going to come from? And basically David Cameron was sort of, well the council would be foolish if they’re not backing these people up. But...

Sarah: He just kept saying, “Well we should have carers in. There should be carers in”. So I’m not being funny but I don’t want some carer to come bursting through the door, get mum up in the morning, not ask her, you know, because, and I know there’s a lot of good carers out there, I don’t mean to sort of stereotype them, it’s just the minority but that, there’s that threat of this carer coming in , shoving mum out of bed, shoving her in the shower. And, I don’t think my mum deserves that. Not after, you know, like she worked all of her life, she brought me up well. And she’s done so much for the MS, young carers, all this, and I don’t think she deserves to just by thrown aside like that. I want to look after my mum because I know how she wants to be looked after. When she wants certain things. 

And no matter what, no one can give that kind of care where it’s actually meaningful. And I just, I just don’t think it’s appropriate that David Cameron should be saying, “Oh, well we’ll just get carers in. Why aren’t carers coming in?” I said, “Well we couldn’t have them anyway because we’ve got savings”. Nothing substantial but those, that small pot of savings, it expels you from everything.

And it’s like, so I’m not going to pay for care that I could be giving for free with more meaning that actually matters more to my mum and to my family. So I believe family should look after each other. But it just, it’s still, at the end of the day, it still stumps me from going to university, from moving away, in my book. I know that mum and dad would say, “Go”. You know [chuckles]. It there’s, you know, mum and dad will be fine by themselves, might, but it’s just not the way that I want things to be because you know with MS eventually things may not be as pretty. They might stay the same for the rest of her life, you never know. They might get a lot worse very quickly.

Ray: Hmm.

Sarah: They might take ages. You just don’t know with MS. But it’s the kind of thing where I’m just not, I’m not willing to spend money on that kind of care when I could be doing it myself. But it does stop me from, sometimes attaining your goals. Not just me, but others obviously. But you know, it’s like if I ever wanted to go to university, thankfully I don’t anyway [chuckles] there’d be no hope because I’d want to stay here. And there was like, I was looking at universities and things like Nottingham and things like that, they’re not close by. They’re not the kind of, you know, I can’t commute. And it’s just, it’s frustrating how even a carer like David Cameron can just dismiss it completely like that. When you know, and it’s like, obviously being a carer you’ve got limited funds as well. Because, you know, like dad said, you lose a full-time wage, you go onto a pension or whatever. Mum’s on a pension, isn’t she? From retiring due to ill-health early.

Ray: Yeah, we’ve both got pensions. Small pensions.

Sarah: No choice, there’s no choice in it. Dad’s health, He could not physically work, I know he couldn’t for a fact. Mum couldn’t physically work. She struggles to do what she does now charity-wise. And it’s, I just think that people can be do dismissive over what you do and why you do it. And it’s just, it’s, that’s the thing that gets to me because I am happy to look after mum. I enjoy it a lot of the time. And me and my mum have never fallen out once in our lives. And I’m sure that’s why. Even, even, you know, I know everybody falls out and everyone says, “Oh, you know, everyone, you know, you’ve got to fall out with your parents when you’re a teenager. Everyone does”. But I just don’t. It’s created a better relationship between all of us as a family. 
(Also see ‘Love and relationships’, ‘Normality and optimism’ and ‘Support from family, friends and neighbours’).

Last reviewed July 2018.
Last update July 2018.
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