The language of Multiple Sclerosis

Each morning I wake up and do the same thing. I make my way to the bathroom and then to the kitchen to take my vitamins and meds. Then I get a cup of coffee. I love my coffee.

There’s something brilliant and wonderful about freshly ground coffee beans. The rich smell that comes from the crushed roasted beans makes my heart smile. Even though I enjoy each cup I make, my affinity for coffee didn’t start until I was in my 30s. I learned that coffee has to be experienced in order to be fully understood.

Have you noticed how coffee shop menus seem to have their own language? You are met with words like latte and demitasse, espresso and macchiato, doppio and breve. No longer is there a simple cup of coffee. Now there is a tall latte con panna.

Multiple Sclerosis has its own language too, which can be just as confusing as a coffee shop menu. Before MS, I didn’t know what paraparesis was, or demyelination, AFO, corticosteroid, and blood-brain barrier. Those words were foreign to my vocabulary. It took me time to learn what they meant along with the hundreds of other new words I was now faced with.

When someone comes along who doesn’t understand MS, give them a break and take the time to educate them on the language of MS. Remember, at one time you didn’t know much about it either. Don’t assume they know what optic neuritis is. Explain what it is in the best every day terminology you can come up with.

You don’t have to know all the technical terms, simply explain it how you live it. Tell them that your vision is “messed up.” That it’s blurred, doubled, painful and that colors are muted or appear gray…that even the red shoes they are wearing or the yellow banana they had for breakfast are gray in color.

Take the time to turn educating people into something memorable rather than a boring rendition from a technical book. We learn better that way anyway. You know more about MS than they ever will because you live with it every day. You don’t just hear the words, you live them.

MS has to be experienced to be fully understood, but don’t let that stop you from telling others about your experience. Seize each opportunity you have to teach others about MS. Some won’t get it, but many will.

I know they won’t understand the feelings that go along with each symptom you endure or the loneliness and isolation you feel at times, but they will begin to learn how different and difficult life is for you. They will start to see your struggle. Be patient as you teach. You didn’t learn things overnight so don’t expect them to either. If they want to understand, they will hear what you have to say.

And if it helps, share the Illustrated View of Multiple Sclerosis images I have made to give them a slice of humor with their learning. It always helps to laugh. (View images)

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

6 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    You love of coffee is not unusual but it’s a good thing to learn about. The technical terns for coffee are a few but the MS terms are great and varied. We each have a different view of MS and can understand other MS’ers just as well. But we all have to tell others what we need or require the best way possible so they can understand something we are going through.

  2. Chris W
    Chris W says:

    Ooo, a coffee lover! Knew we had more in common than MS! Your way of looking at things is so refreshing! Thank you! Hint for ice coffee, make ice cubes from leftover coffee. (Or make some just for ice cubes because who really has leftover coffee? ) When they melt it does not dilute the coffee!!
    Blessings, thanks and prayers!

  3. Meeya
    Meeya says:

    Just having my afternoon cup of coffee (with plenty of choc ice cream in it, as we have 89.6 degrees F here!😥), reading your post & thinking of you…
    Realizing how much you’re giving to all of us, and how special you are. THANK YOU again & again & again… 💜

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