A Glimpse Into a Life with MS

MS is a Difficult Journey
MS is a Difficult Journey. Buena Vista Images/Getty Images

I want to explain a little about what MS feels like. Words like "tired" or "confused" really are inadequate, so I thought I’d try a little exercise with you if you wouldn’t mind indulging me.

Please close your eyes.

You’ve been asked to take a business trip to a country you’ve never been to—let’s say somewhere in Asia (to make it really far). It is a last minute request by your boss, with little time for mental or physical preparation. Things are rushed and hectic, so you’re not sure if you packed the right stuff —in fact, you end up with a carry-on bag that is heavy and bulky. You also end u being late to the airport, so you worry the whole time that you stand in the long security lines that you will miss your flight.

You run to your gate in uncomfortable shoes and a heavy coat with your bags and are the last person to board. You are seated in a middle seat in the back of the plane, and there is no room for your bag, so you stuff it under the seat in front of you, meaning you have no place to put your feet except on top of your bag. You are hot from running.

The captain comes on and welcomes the passengers aboard, informing them that flying time is fourteen hours.

Fast forward ahead to the end of the flight. Your neighbor kept poking you with his elbow, then fell asleep leaning on you, so you couldn’t sleep. You couldn’t really eat, as your knees prevented your tray table from being level. The person in front of you had their seat reclined anyway, so it was pressing on your knees the whole time.

There is a little turbulence, but the plane finally lands. The person next to you drops their bags on your head trying to get them out of the overhead bin. People are taking their time getting into the aisle, leaving you in an awkward position while you wait. You stuff your swollen feet into your shoes and grab your bag, which seems to have gotten heavier.

You finally get off the plane. Nothing is in English (or any other language you may understand). It is 2:00 in the afternoon and everyone seems to know where they are going except you. You have not slept for 36 hours. The sun is streaming in, and everything is very bright and very loud.

So let’s have a look at how you feel at this moment:

  • You are so exhausted and drained that you feel slightly nauseous and dizzy.
  • You’re confused—you don’t know exactly where you are or where you need to go. You know you will figure it out eventually, but right now, the lights are too bright and the sounds are too loud. You brain feels like it is in a complete fog.
  • You are overwhelmed with lonliness and downright panic, as there is no partner or loved one to help you navigate your way
  • Your legs are stiff, and your feet are both tingly from falling asleep and painful from your shoes being too tight.
  • Your fingers are numb, so you have a hard time opening your bag and pressing the numbers on your phone
  • You need to urinate badly but don’t know where the bathrooms are.
  • You are too hot from the coat that you are wearing, because you don’t want to carry it too.
  • Your bag is heavy and awkward and you feel too weak to carry it. Then the strap breaks and you want to cry.

Okay, open your eyes. That moment is it. That is MS.

A Word from Verywell

The experience, symptoms, and feelings about having MS are different for everyone. If you have MS, you can probably add uncomfortable details into my “visualization” or create your own that is more appropriate to your situation. If you don’t have MS, but a loved one does, ask them how they feel—really feel—most of the time. Their answer may surprise you.

Again, the point of this exercise was not to get sympathy from my audience (or anyone reading this now). It was to communicate something that is very central to my life. It was to make a connection with other human beings around this thing called "MS," even if it is just for a moment.

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