How to Talk to Someone with MS, Part 2

In MS, Multiple Sclerosis on June 16, 2010 at 6:08 pm

“You’d never know she had it!”

How many times have you heard that phrase in relation to someone with MS? I’m going on a million…and counting. Every time I encounter someone new who learns that I have MS, they say, “Oh, my sister-in-law has MS and you’d never know it.” They may even continue with, “And you look good, too.”

Why do they say that?

Well, most people do not know what to say to someone who is chronically ill, so you have to excuse them. They mean well, but they have no idea what an MS patient endures.

MS is sometimes an invisible disease. Other people cannot see pain, fatigue, blurred vision, or loss of memory. If you’re not walking with a cane or in a wheelchair, everyone may assume you’re fine. So although they may say “you’d never know she had it,” they need to be reassured that of course, the person with MS definitely knows they have it.

External appearance has nothing to do with the internal symptoms we face or the daily accommodations we make in order to lead a fulfilling life–pacing ourselves because of fatigue, staying cool in hot weather, taking injections, altering our diet. Having MS means your life is never the same again. That doesn’t mean that life isn’t good, it just means that life becomes different.

In MS and Your Feelings, Allison Shadday writes that many people don’t know how to respond kindly to news of an illness, so they instinctively say the first thing that comes to mind. But hearing that you or another with MS “looks good” actually demoralizes our experience. If we are repeatedly told that we look good, we may feel that speaking about our symptoms is just complaining, and we may cease to understand how we feel about being sick.

If I look good shouldn’t I feel good? Why am I complaining? Maybe I shouldn’t say anything at all.

Acknowledging your symptoms is of great importance. You must understand your physical limitations and emotional pain regarding being ill and communicate that effectively with friends, loved ones, caregivers and doctors. If there’s no problem, there’s no solution, right?

So perhaps when someone says “you’d never know you had it!” you can remind them that “well I know!” and steer the conversation toward a place that’s comfortable for you. If you need help, ask for it. No one will know unless you say so. After all, you look good!

  1. So glad to have found you! I was diagnosed with MS about a month ago…officially… but you know how it is… I’ve had symptoms since, oh, I guess about 18 years ago or something crazy like that…

    Anywho, glad to have found your blog and will be reading avidly!

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