Talking about MS: Advice for carers, family and friends

Knowing what to do and say at the time when a family member or friend has been diagnosed with MS doesn’t come easily to everyone. Some people are so worried they will say the wrong thing they don’t say anything at all.

However, avoiding saying or doing anything can close down the lines of communication between you and the person. If you are uncertain about how to help, here are some tips to get you started.

Let them know you are there for the whole journey

“I know you can do this, but I also want you to know I've got your back. I'm here for whatever happens. Is it okay if I check in again next week?” Being patient and understanding if they aren't ready to talk is important. Let the person know you care. Ask them how they’d like to talk about things.

Do something practical

“I'm doing school pick up, can I pick up our kids and drop them home, or take them out for an ice cream”. Practical support is a great way of breaking down a barrier or providing support if you are not sure a person is ready to talk about it.

Help out the others around the person

“This is hard for your family. Thanks for letting me know what’s going on. If you want someone to go for a walk or a coffee, I'm here.

Send a text or email

“It's so tough that you are going through this. I'm here if you need me to listen. No pressure to respond”. Sometimes, a text is better than no words at all and can open up a conversation that feels safe.

Here are some other suggestions of what you can say:

“I just want you to know that I'm here for you. I'm truly sorry to hear about your diagnosis.”

“Please know that I'm here to listen, and to support you in any way you need.”

“We're in this together, you're not alone. If you ever want to talk, share your feelings, or even just take a break from it all, I'm here.”

“Your strength is inspiring, and I believe in your ability to face this challenge with courage, but if you ever need me, I’m here.

Other tips for talking about it:

• Asking “how are you?” can feel very generic; try “How are you holding up today?”, or “How are you really?”
• Don’t try and fix it, avoid tips and tricks
• If you aren’t especially comfortable talking about feelings, that’s ok. It can take practice, for most people it gets easier over time.
• It can be hard to express love, especially in times of sadness and grief. Sending a text, email or video message maybe helpful, or finding someone who is good at it and join in with them.
• Be curious, listen and validate feelings.

Talking to others

It’s helpful to talk to your own support network when you are feeling worried or upset about something. However, be mindful when you’re talking about another person’s medical condition. Before revealing any information, have a conversation with the person you're supporting about whether information can be shared.

People may react in different ways when hearing about the news, potentially raising various questions. It’s okay to not have all the answers or provide extensive explanations.

When considering what to say to others, you can start with:

• “My (partner, family member, friend) has recently being diagnosed with MS............”

From there, you can communicate your specific needs:

• "Right now, I just need someone to talk with and listen to. I value your support during this time."

OR

"We're doing fine. However, I would appreciate it if we could focus on other topics for now. Your understanding means a lot."

In some instances, people may become overly curious or try to offer opinions that you would rather avoid. If conversation leads you to a topic you’d prefer not to discuss, you can respond by saying:

• “I’d rather not talk about that right now.”

Tip: It can be helpful to recognise that being open to other people in your life can create opportunities for more support for you and your person with MS.