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.’
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.
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.
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.
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.
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.
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:
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.
(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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