Telling your family you have MS

There is no right or wrong way or time to tell your family you have MS.

This page takes you through some of the things you might want to consider when telling parents, partners and children you have MS and has some tips about how to tell them and how to deal with their reactions.

There are also links to some books, leaflets and websites to help you explain MS to kids.

Telling your parents

"My mum wanted to wrap me up in cotton wool when I told her. I really appreciate my family's support. I just want them to realise I can still do stuff for myself."

Grief and worry are normal emotions after such a big bit of news. Parents, after all, tend to worry about their children, even long after they have grown up.

People with MS often say their parents felt guilty after their diagnosis believing that they had somehow 'given' them the condition.

Try giving them information about MS to look at in their own time and then give them time and space to digest it. It can also help to be open and willing to discuss any questions and concerns they may have.

Your parents have probably been with you through the ups and downs of your life up until this point, and this is just another part of the journey.

Often, people take their cue from you on how they should act.

It might be helpful to consider how you would want your parents to react if it were you in their position.

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Telling your partner

"The hardest thing I've ever had to do was tell my partner that I had MS. How could I expect him to understand and support me when I hadn't even accepted the truth myself?"

If you have a partner, then your MS will change their life as much as yours. This can be worrying for both of you and they might need your support as much as you need theirs.

It helps to remember that it will take time for your partner to absorb what you have said.

If you’re telling your partner a while after your diagnosis, think how long it has taken you to accept your illness. If you’ve been recently diagnosed you will probably have a lot to deal with yourself before you feel able to take on your partner’s worries and fears.

Try to think about telling your partner as the start of a discussion. A lot more communication will be needed over time.

Remember you can't predict the future. All relationships have their ups and downs, and any number of things can bring them to an end - or not. As with all issues that affect couples during their relationship, communication and understanding are vital.

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Telling your children

A lot of people worry about how to explain MS to their children, and how they will take the news.

You are the best judge of how, when and how much to tell your child about your MS. You know them best, and you know how much information they’ll be able to deal with.

Kids will naturally have questions, feelings and concerns. You should encourage them to share these with you. Remember they can be much more resilient and accepting of life’s changes than many adults.

Every child will react differently to the news, but children often worry:

• that they have caused the MS
• that it is contagious and they will catch it

These worries can create a lot of anxiety for children.

Child psychologist Lisa Happ offers these tips for talking to children:

• Choose a time of day when your child isn’t tired or distracted
• Make sure you can look them in the eye and gauge their reaction (a car talk is not ideal!)
• Give them a conversational warning, such as, 'We have something important to talk about'
• Don’t feel you have to tell them everything about MS all at once: state the basics, then answer questions
• It’s OK to say, 'I don’t know, but I’ll try to find out,' to any question
• Use medical terms, and explain them. Express confidence in the doctors and your hope for a normal life
• Explain what changes your MS may make to your child’s routine, if any
• Check in from time to time to make sure your child understands and feels supported

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Resources to help explaining MS to kids

There are lots of free resources out there to help you explain MS to kids:

• Two MS Society books for younger children: Our Dad Makes the Best Boats and Our Mum Makes the Best Cakes giving a reassuring but realistic picture of how families deal with MS
• A short MS Society DVD, called Annie & Dan Talk About MS, which explains MS in a way that young children can understand
• For older children and teenagers, there’s MS Explained for Teenagers
• The MS Society's 'Young MS' website also has lots of information about MS. It’s split into two sections – one for kids, and the other for teenagers.
• The MS Trust also produces information which you may find useful, including a booklet called Talking with your kids about MS www.mstrust.org.uk
• 'Keep s'myelin' is a magazine for kids from the American MS Society. It has interactive games and information aimed at children, and explains MS to them. The website also has networks to enable teens to talk to each other and form supportive groups.

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