How NOT to talk about MS

16 May 2013

Diane Evans on why it’s best to stop, look and listen before holding forth on MS.

Most people with MS will come across this situation at least once in their life after diagnosis. You meet a work colleague of your partner’s and have to make small talk and you end up talking about MS. The work colleague turns out to have a fabulous friend who also has MS, but it went away for a long time but recently it’s come back and has targeted their eyesight, and they are now registered as blind. But they are still working with their husband in their own business and being a productive part of society. They then go on to tell you how there’s a job out there for everyone and since you can’t get a job that requires going out to work, maybe you should try working from home, filling envelopes or making badges?

At the time I was so astounded at the ignorance, arrogance and rudeness I was at a loss for words. But mulling it over later at home these things came to mind.

So you know a person with MS?

That’s not too surprising. There are over 2.1 million people across the world with MS, it’s really not that uncommon.

You know a little bit about her condition and at least one of her symptoms?

The symptom you are aware of is probably just the tip of the iceberg. For every bit you see above the surface there’s another 90 percent going on under it. Unless your friend is a gobby mare like me she’ll probably not tell you about it even if you ask!

Don’t think you know enough to offer someone who lives with MS career advice

Think about the person sat across the table from you. Before holding a friend up as a paragon of good living with MS, have the decency to ask the person across the table from you how their MS affects them.

If you know one person with MS that’s all you know. If your friend is vocal about their condition you may know about a few of their symptoms but you still only know one person with MS and a tiny portion of what they experience of life with their MS. I have MS. I live with the iceberg of symptoms in all its glory every single day of my life and I know exactly how my MS effects me. But I don’t have a clue of my friend Meg’s experience with her MS or of how anyone else with it experiences it as it is individual to each person with MS. If I have it and I don’t know how it affects others then you aren’t in the best position to be offering advice.

If you have a friend who’s got MS, but isn’t that vocal about it, educate yourself

Ask people like me who are quite happy to tell you in clear terms what it means to live with a progressive, degenerate and mostly invisible disorder. Most of all, listen and learn because your friend with MS deserves that from you. Your friend might struggle to put their experiences into words or they might find it difficult to talk about. One person’s experience MS is very different from another’s. Everyone is wired differently. How I experience pain is not relative to how you do.

I’ve spoken a lot about the ‘do nots’ here, but there’s only really a couple of 'do's' you need to remember. Do ask questions and do educate yourself so you understand better what people with MS have to live with.