9 Ways to Deal With People Who Don't Get MSby Lisa Emrich Patient Advocate
“You don’t GET MS, until you get MS.”
If you have multiple sclerosis (MS), you might have heard that saying at least once before. It’s one of the first things I remember hearing people say after I was diagnosed. I didn’t understand the simple significance of the phrase then, but almost 15 years later, I finally do. So how do you deal with people who just don’t GET MS?
Here are my top suggestions that focus on preserving your own sense of calm.
Take a deep breath and practice compassion
Sounds simple. Almost too simple. If you’re used to people not understanding the complexities of MS, you’re not alone. It’s easy to lash out in anger and frustration. But don’t. Instead, take a moment to find your compassion for their lack of knowledge first. Remember when you were newly diagnosed; there were probably many things you didn’t understand as well.
Keep talk about MS simple
If the person who just doesn’t get MS is open to learning more, I suggest that you keep explanations simple. There are basically three things to know about MS. Here goes. The brain controls the body by sending out super fast messages over a highway of nerves. In MS, the nerve signals can get delayed, detoured, or detained. When the messages get jumbled up, the body malfunctions in a variety of ways, causing symptoms we can see and others we can’t. Simple, right?
Show grace and gratitude
Sometimes it’s the approach that helps others to start to “get MS” just a little. The following phrases may be hard to say at first, but they are enormously invaluable — Excuse me, please; Could you kindly help me to [insert need]? I have difficulty [insert task] because of MS. Follow up with a sincere thank you if you indeed received help or accommodations. Congratulations! You’ve just accomplished two things: lightened your own burden and subtly educated someone about MS.
'My aunt had MS and she died.'
Well, isn’t that lovely to hear? People sometimes blurt out the most inappropriate or insensitive words. Try not to take it personally. You, the person living with MS, know full well that MS is different for each person. Just because your friend with MS needs a wheelchair doesn’t mean that you will. Just because you have trouble speaking and swallowing doesn’t meant that the next person will too someday. My response to this type of statement is a simple — “I’m very sorry for your loss.”
Listen to the thoughts beneath the words
Listen carefully to what the other person is saying — it might boil down to an expression of their fear for your future or perhaps their own (what if THEY get MS one day?). It can be challenging to express empathy in a way that doesn’t sound condescending or insincere.
Be ready with conversation-starting questions about MS
Hey, did you know that MS might grant you super powers? MS can give you the nose of a bloodhound. It can make you a human thermometer, capable of detecting a rise in temperature of only a couple of degrees. MS can even help you connect with some of the coolest folks who also happen to live with MS.
Prepare your elevator speech about MS
Seems like people’s attention spans are reduced to 90-second snippets of interaction these days unless there’s a reason to become engaged. If someone asked you, "So what is MS anyway?" what would you say? Remember the “simple talk” advice mentioned earlier. If your reason for talking about MS is to explain why you need an accommodation at work, be super specific and brief. If you’re giving a motivational speech, know your audience and tailor your message. So basically, practice what you will say in advance.
Avoid saying ‘You just don’t understand!’
When you become frustrated with people who don’t get MS, try not to go on the offensive. It may effectively shut down any chance of having a meaningful or educational exchange. Save your expletive commentary and complaints for friends and close relatives who absolutely do understand and support you unconditionally. You’ll preserve potentially scarce energy and find that the frustration stings less when you don’t feed it and let it take over your emotions and thoughts.
Determine why it matters to you
This is a tough one. Sometimes you just don’t feel like telling people anything, but want them to trust that what you say is the absolute truth. Take a moment to evaluate your own motives for caring whether someone “gets MS” or not. You may find that it just doesn’t matter. But you may find that you need someone close to understand so you can work together to share burdens and make life easier. Maintaining a strong relationship is why I care that my husband is one person who “gets MS.”
Stay calm and carry on
Please understand that your sense of anger, resistance, and frustration with those who don’t “get MS” is totally normal. It’s how you handle that frustration that matters most. You can’t control other people, but you can talk with them. If they learn something, great! But if they aren’t interested, so be it. Your well-being is much more important!