How to irritate someone with MS

Nonetheless, I guess most people with MS have received comments they found irritating, hurtful, critical or just plain wrong – sometimes funny, too.

Here are some of my favourites:

• ‘Nobody would guess you’re ill. You look so well!’ (I don’t feel it)
• ‘It’s no big deal. My aunt had MS and was still playing golf into her 80s…’ (Bully for her. But am I failure if I can’t be as active?!)
• ‘I know exactly what you mean about fatigue! I get so tired, too – but a hot bath and an early night soon put me right. You should try a hot bath just before you go to bed…’ (A hot bath??? Are you mad?)
• ‘I saw this really wonderful influencer on YouTube. She was diagnosed with MS, but refused to accept it. She’s cured herself through positive thinking. Her scans are normal and her doctor says she’s a miracle. There’s a programme you can buy…’ (Words fail me. And miracles, by definition, are rare)

These examples may or may not irritate you. But I’m sure you can think of things people have said that did push your buttons. How do you feel when you hear people say these things? I know I often used to feel irritated that they didn’t understand the realities of MS and its impact on my life. But I’ve mellowed over the years.

An opportunity to educate people

When people say these things, I usually feel they’re trying to help, and I focus on the good intention. Often people don’t know much about MS. And why should they, if they’ve never come into contact with it? So sometimes it’s an opportunity to educate people a bit about the realities of the disease and the wide variation in symptoms and degrees of disability. Everyone’s MS is their own, and everyone is different.

It’s great that Jenny’s aunt could play golf despite her MS, but I can’t. (Mind you, I couldn’t play golf before I had MS).

Language can be misleading

And MS can be such an invisible illness - I often do look much better than I might be feeling. I’ve sometimes taken the opportunity to open up a conversation about invisible illnesses and how they impact on the people who have them and those around them.

The language used to describe MS symptoms doesn’t help. For example, the word ‘fatigue’ suggests a normal state that everyone experiences at times. But MS fatigue isn’t like that. It’s often felt to me more like falling off a cliff – sudden, unexpected, and not necessarily related to anything I’ve done or failed to do. Language is meant to communicate, but sometimes it misleads. I definitely feel we need a better word to describe MS fatigue.

I have to take responsibility for myself, too. When people ask how I am, my usual internal response is that they don’t really want to know, and I don’t want to trouble or upset them. I don’t want to be the person who’s always banging on about their symptoms…there’s more to life. These thoughts flash through my mind automatically as I hear the question. So my frequent response is ‘surviving’, or ‘fine’ – both fairly meaningless. Depending on who I’m talking to, I might now ask if the inquirer really wants to know how I am. And if they say ‘yes’, I might ask if they want the long or short version!

Responding to the kindness

It’s easy to become irritated when people say things that feel ignorant, inappropriate, thoughtless or critical. Some statements do need to be challenged. For example, ‘miracle cures’ can be dangerous and can be ways to extort money from vulnerable people. But anger can be a wasted emotion, and a waste of energy, and I don’t have energy to waste.

It’s easy to feel criticised, too, when someone tells me about a person with MS who seems to be coping so much better than I am – but I’ve realised that usually people are trying to offer some reassurance and comfort.

So I try to think before I respond – what is this person’s intention? And if it seems to come from concern and a desire to help, I try to respond to this kindness, and take the conversation as a small opportunity to raise awareness about MS.