Northern Ireland’s Multiple Sclerosis charity

MS & The Family

Multiple sclerosis affects the whole family. It is something that shocks parents, sisters, brothers, children and friends.

MS and the Family

It is hard to accept but it is something the family has to learn to live with. Action MS Professional Care Advisors can talk with the whole family, even children about multiple sclerosis and the impact it may have.

Relationships

One of the problems in relationships is communication. It becomes an even greater problem when we bottle up feelings of anger, frustration, fear and anxiety. So in coping with MS we need to “let fly” now and again and open up our hearts, share the burden and thus prevent emotional barriers from cutting us off from those who care.

People with MS do have mood swings. But the person is the same. People with MS may suffer depression. But the need to talk remains. People with MS will change with the passing of the years. But then we all do that.

Whatever way we look at the impact of MS on a person’s personality it is as well to remember that there are no black and white answers – life is complex. Change of one sort or another comes to us all.

Of course a diagnosis of MS can sap a person’s confidence. There is a very traumatic sense of uncertainty and this seeps into relationships. The same may be said of people who face unemployment, financial problems and so on. In all of this the family has to learn to cope with more. But tragically, it may sometimes happen that family members use MS an as excuse for not dealing with situations frankly and openly. MS is blamed for everything and feelings of hurt and anger are allowed to fester.

MS and the Family

Couples

A diagnosis of MS may set in motion feelings of individual loss which can lead to thoughts of worry about losing a partner’s love. That worry may be justified for there will be times when the strain of MS stretches to breaking point in a relationship. However the deeper the root the better chance there is of the tree standing firm. A strong and stable relationship will be able to draw on reserves of strength and the trauma of MS may indeed bring two people closer together.

But remember that nowadays one marriage in three ends in divorce. MS may not be the only cause of difficulty for as someone said: “MS for us was the straw that broke the camel’s back.”

The early years in a relationship can be hit hard by MS in the sense that the roots have not grown strong enough to cope. And family pressures may demand that a relationship continues in spite of an individual’s wishes or the quality of the relationship.

Nevertheless a significant number of couples learn to live with MS and to go on to enjoy a meaningful life together.

Sexuality

MS can lead to particular physical and emotional problems. These stem from damage to the central nervous system and this may impact on sexual functions. There are many specialist advisers and counsellors available to help when difficulties of a sexual nature threaten to spoil a relationship. But first it is better to talk to each other and then, if necessary, to a counsellor rather than let matters get worse. The family doctor can offer advice, medication and help in finding a special therapist or clinic.

Pregnancy

A relapse often occurs in the months after birth. However, research shows that the long-term clinical condition of women with children is not significantly different when compared to women who do not have children. It seems that over time pregnancy may not have negative consequences for women with MS. There is no justification in advising termination of a pregnancy because of MS.

MS has no effect on a man’s fertility.

If you are planning a family it would be worthwhile having a chat with your family doctor or neurologist, especially for those women who are on disease modifying therapies. Always speak to your GP and neurologist before planning a family.

When a parent has MS

Children will be confused when a parent becomes ill. Their source of emotional security and stability, their invincible mummy or daddy, is suddenly vulnerable. It is then that children need help and support.

The best way to give this support is for the family to talk it over with the children. There is no value in trying to protect them from the reality of MS. If they are kept out in the cold, with the best of intentions, their imaginations will take over to paint a picture that is both scary and bleak. MS should not be a secret. Allow children to talk it through and express how they feel and how they may cope with the change in their family life. So in discussing MS with the children we need to remember they are not adults.

Plain speaking that is direct and caring and free from jargon is a good start. Questions will flow and they should be patiently answered. But for some children enough information will be enough. There is no merit in force feeding information which is not asked for.

From time to time care should be taken in reassuring children. This reassurance may be expressed in a number of ways: “MS is not directly passed on from parent to child”; “You cannot catch MS like you can a cold or chicken pox”; “You are not to blame for mummy being sick”; “Daddy loves you but he can’t do some things because he is ill”; “Most people with MS live just as long as other people”. It is important not to give false reassurance: “They will definitely find a cure for MS soon”; “Mummy will not get any worse”; “Daddy will never have to go into hospital again”. Say what you mean and mean what you say. Of course you get sad and angry sometimes. Children will too. Share these down times and allow them to talk to others in the family, in the circle of friends, in the school.

Action MS provides specialised one to one support for children who are finding it difficult to come to terms with MS coming into the family. “A Fishy Tale” the Action MS story book written specifically for children, explains MS in a non threatening and non frightening way. For your free copy of “A Fishy Tale” or to find out more about Action MS support services for children please contact us at 028 907 907 or info@actionms.co.uk

Carers need Care

MS affects the family and members may be required to play their part in caring. This new responsibility may be restrictive and disruptive. Nevertheless what needs to be done to care is often prompted, and indeed inspired, by love, a sense of duty or in a more negative way by a feeling that they have really no other choice.

So someone takes on the role of carer and research shows that most carers do so cheerfully despite the physical demands, the emotional stress and the time consuming nature of the role.

Some of the difficulties facing the carer are practical such as finance. There may be a need for extra heat or accessible transport. Not so measurable is the feeling of isolation which a carer may experience. The restrictions on going out to the shops or attending social events or going to church all undermine a carer’s social life. All this may lead to friction and leave the carer in a “no win” situation.

Changes

MS may demand changes in the role of individual family members. The person with MS may find it difficult to continue with some of the jobs within the family. So other members of the family will have to step in and change their routine. This can be disturbing in more ways than one. It’s said that coping with change is the most stressful thing we can experience. This is particularly true in a traditional environment where it has long been accepted that ‘mum does that’ and ‘dad does the other thing’. Moreover in a shared role situation – share and share alike – change may mean shifting the balance with more required of one of the partners.

One carer said: “It became difficult being a wife, mother, wage earner and carer but with time I just learnt to cope”. It is important to stress that while a person with MS may find their role changing within the family it does not disappear. Change may mean finding a new role. “In the past when I was working I had little time to spend with the kids. I can do things like help them with their homework now and I can play a real part in their lives”.

It is important to stress that while a person with MS may find their role changing within the family it does not disappear. Change may mean finding a new role. “In the past when I was working I had little time to spend with the kids, I can do things like help them with their homework now and I can play a real part in their lives.”

Action MS Book – A Fishy Tale

Action MS recently published “A Fishy Tale”, a story book that explains multiple sclerosis in a non threatening way and is written specifically for children, for your free copy or for further information about other Action MS support services for children, please contact; 028 907 907 07 or info@actionms.co.uk.

You can also view an interactive version online.

Free information booklets

If you would like more information please contact Action MS to request a set of free information booklets.

Need to talk to someone? Call us on 028 9079 0707

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Schools Campaign

The Action MS “Walk for MS” is about school communities taking steps to beat multiple sclerosis as well as developing caring attitudes.

Find out more about “Walk for MS”