MS affects not only you, but those around you as well. As a parent, you may consider how and when you talk with your children about MS.
Many people with MS are parents, and the children in their families are affected by MS as well. There is no denying that living with MS can be difficult and at times frightening, particularly when you are first diagnosed. If you have children in your family, you may wish to consider how and when you discuss your MS with your children.
We have a number of publications that may help them understand MS and what it might mean for the whole family. Here on the website, our section on Young People and MS also looks at life with MS from their point of view, and addresses issues like education and social life through the stories of young people affected by MS.
MSTV, our Youtube channel especially for young people affected by MS, presents information about MS in an accessible way.
When is the right time to talk about MS?
This is a decision for you and your partner to reach together. You know your children and your circumstances best, and you can choose an appropriate time and way to bring up the subject. The ages and personalities of your children and the nature of your MS will affect the decision. Research shows that telling children about MS is helpful for them, so long as you are honest, and reassure them that although things might change, you love and care for them just the same.
I told them while we were doing a simple craft activity together. I found this easier for all of us than a more formal 'Sit down, I've got something to say'.
Not all children will want or need to know all the details about your MS, but that may change over time. As your children mature, they may have more questions about MS. Keep communicating, not just the facts, but your own feelings and thoughts as well. Children can be very supportive and insightful, and may surprise you.
It is healthy to encourage your children to ask questions about MS. Find out the answers together if you are unsure. This website and our publications are a good place to start.
Information and emotions
Young people affected by MS could have strong emotions about MS and how it affects them and their family. While you are going through your own coping strategies following an MS diagnosis, be aware that your children may need support and information as well. Their emotions may be expressed as anger, sadness, confusion or problems with their friendships or behaviour.
Children are very sensitive to stress levels in the family. You may have thought you were keeping your MS secret, but the chances are your children were aware that something was wrong. If they feel left out, they may make up their own story, which could be worse than the truth. You may find that getting things out in the open is a relief to you, too.
At times my daughter gets frustrated with me and at the same time angry with herself for feeling that way.
Some children may feel more comfortable turning to a grandparent or other trusted adult for emotional support. Your children may also discuss MS amongst themselves. The evidence shows that children can cope with a lot when adults are open and honest, and children made to feel that their feelings and opinions are important.
You can help your children by expressing your own feelings, happy and sad, in a way they can understand. This helps them realise that it is fine for them to say when they feel angry or upset about MS.
Children and responsibilities
If you have MS, you may find yourself asking your children to take on extra responsibilities, such as housework, cooking or helping with your mobility or younger children. This might be on a regular basis or just from time to time when you are having a hard day with your MS.
Dylan knows that Mummy may want a bit more help around the house when she is having a bad day, and he is (normally) happy to help in his own little way.
In general, learning household skills and how to be responsible are valuable life skills for your children. It certainly won't hurt them to step up a little and help you, and they may become more mature and thoughtful than their peers as a result. Your children may be pleased that they can do something useful to help you, but they might also find extra responsibilities frustrating if they prevent them from doing other things. Make sure that your children know how much they and their assistance are valued, but they should not feel that it is their role to be your carer.
However, if caring for a parent with MS is starting to affect their own education, careers or mental health, you may need to look carefully at the situation. Children should not be involved in personal care, such as toileting, which should be handled by an adult or professional. Your social worker, GP or MS nurse can help you arrange this.
Common questions children might have
How did you get MS (and will I get it)?
Younger children may only have experience of infectious diseases like chickenpox or colds, and may presume that MS is caught from others. Older children may have some knowledge of genetics and assume that they will get MS too. You can explain that MS is not caught from other people. Occasionally more than one person in a family has MS, but this is not common.
Can you die from MS?
Most children will have this worry. They need reassurance that although sometimes MS can make people very ill, this doesn't happen often. People with MS will generally live a long life.
What's going to happen?
Many children ask questions about whether the MS will get worse and how it will affect their future. They worry about what might happen to them if you need to go into hospital or can't look after them. It's important that you acknowledge the uncertainties of MS and admit that it worries you too. You can make practical plans so that they know who they will stay with if you have a hospital stay, and make sure they have trusted adults to talk to if they need.
Is it my fault you have MS?
Young children in particular relate everything to themselves, and may worry that they have somehow caused MS. People may link their diagnosis to important family milestones by saying things like 'My MS was fine until James was a toddler', or 'I really went downhill after I had my first child'. Children can misunderstand such statements to mean that they caused the MS. All children need to be told that MS is never anybody's fault, and that if they are naughty it may make you cross, but it won't make your MS worse. If you think that your children are trying too hard, let them know that they can't make the MS better, and encourage them to follow their own interests.