When your friend, partner or family member tells you they have MS it can be hard to know what to say, for both of you.
MS can put relationships to the test, including with friends and family. You might not feel like talking if you’re worried or uncertain. But now’s the time when good communication can help you both find a way through this. When you first find out, two things can often help:
- information - especially about symptoms and treatments
- hearing from people in the same position
I’ve been able to go to festivals, concerts, operas and trips abroad, even when I’ve been hardly able to walk. That’s thanks to better access, helpful family and friends, and staying keen to try things.Yasmin has relapsing MS
Just being there is a great start
Sometimes people need space to process a diagnosis, especially if their MS has physical symptoms that stop them living the life they're used to. You can still help by holding a space for them to come back to when they're ready.
- Let them know how much your relationship means and that you’re still up for having fun together
- Instead of going out, arrange to have a meal at home or to watch TV or a film
- Keep the contact going through Skype, Face Time and social media
My wife asked me to be honest, to tell her how I was really feeling, and to stop saying ‘fine’ and leaving her guessing and thinking the worst. This way I know we’re dealing with my MS as a couple.Tom has MS
What do I say to someone with MS?
If you’re feeling awkward, why not say so? Ask the person how they’d like you to talk about things. But think twice about giving advice. They may have had enough of that. They may be happier to hear you say:
- “So, how are you really feeling?”
- “I’m here for you if you need me”
- “Where can I learn more about MS?”
What not to say to someone with MS
People say things they think are helpful, but often they can be irritating without meaning to be. Here are some things to avoid:
- “But you don’t look ill.” MS has lots of symptoms you can’t see, like fatigue, pain, heat sensitivity or problems with balance, memory, bladder, bowel or eyes. Saying someone doesn't look ill can undermine how they feel. Try instead:
“You’re looking good. But how are you feeling? If you want to talk about your symptoms, I’m listening.”
“Heard about the special diet that cures MS?” There’s no quick fix or cure for MS. The person close to you with MS has probably looked into lots of ‘miracle cures’, and become sceptical about stories in the media. Instead, you could talk to them about things we know will make a real difference to their MS:
- “I know someone with MS. And this happened to them…” There are different types of MS and everybody has their own unique set of symptoms. MS for the person you know will be very different to how it is for someone else. Instead say:
“I know someone with MS but I expect theirs is different to yours. Tell me how it is for you.”
- “You’re tired? I get really tired, too.” MS fatigue is a feeling of exhaustion so bad you can barely raise your head off the pillow or even think straight. Avoid comparing everyday tiredness with fatigue if you want to stay friends. When you have MS you learn to make your energy last, for example, by keeping cool or resting during the day. You do things at times when you know you have enough energy. Make allowances for this or if someone with MS cancels plans.
Everyone is different
Ultimately you and your loved one are the experts in your relationship. And it's really important you keep your lines of communication open.
But sometimes it can really help to talk to someone outside your friends group. Our MS Helpline team are here to make sure no one has to face MS alone. You can ring them for a chat on 0808 800 8000 Monday to Friday, 9am to 7pm except bank holidays.