Share your story

Talking about your MS can help you cope with your diagnosis and let others understand what you are experiencing so they can support you along your MS journey.

Telling people about your MS

Family and friends

Sharing your experience can empower your closest family and friends to help you. If your support network is aware of your symptoms, triggers, treatments and emotions, they’ll be able help you if and when you need it.

  • Explain how and when you would like to receive help so you still feel in control
  • Be clear about your capabilities and what you are going through
  • Explain that a flare up or period of fatigue will result in you not wanting to socialise quite as much
  • Don't feel guilty if you need to take some time out to relax and look after yourself
  • If people need to tell other people about your MS, set some ground rules and provide some phrases they can use so they know what to tell others and how much to tell them

Children

Children are perceptive and may be glad to know there is a reason for your symptoms, so don't wait too long before putting their concerns to rest.

  • Choose a time when everyone is relaxed but not distracted by things like the TV so you know they will be listening
  • Tell all your children at once, as it's better hearing it from you than each other
  • Use simple language and give as much detail as you feel is needed
  • Be prepared to tell them you don't have all the answers

5 ways to make telling people about MS easier

You may be worried about what people will say or how they’ll react, but these five tips may make it a little easier.

1

Tell people on your terms

Telling people about your MS is something you can control. You decide who to tell, when to tell them, how to tell them and how much to tell them.

2

Give as much or little detail as you want

You may want to describe every detail, but you can also keep it brief. You can talk about MS in general or be specific about your experience – it’s your call!

3

Expect the conversation to be uncomfortable

People will need time to adjust to what you are telling them too. Often they don't know what to say or worry about saying the wrong thing, so they may go quiet or say something upsetting.

4

Prepare to be surprised

People can react in unexpected ways. They may be shocked, sad, angry on your behalf or relieved you have a reason for your symptoms.

5

Have information at hand

Printed pieces, websites and other sources of information can help explain MS and what you're going through.

Questions you could ask your neurologist

Select which questions you would like to ask at your next appointment

What list?

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