But You Don’t Understand!

Several times through the course of my multiple sclerosis I’ve had the sensation of bugs on my skin or a loose hair on my face.  A particular type of paresthesia known as formication that many people have experienced and is often caused by stress or anxiety.  This symptom is easy for most people to relate to.

However more times than I can count, when people try to understand they instead jump to conclusions by relating to your weak attempt at a description by saying, “Oh yes, I have [or get symptom] now and then but it only lasts for a day or so.”  But it is NOTHING AT ALL LIKE WHAT YOU ARE TRYING TO EXPLAIN!  You weren’t looking for a solution, you were just trying to give an example and hoping they’d understand.

Put Them in Our ShoesReturn or enter?
To paraphrase “Matt Allen G” from his blog “MattsMS.com” and his entry on Wednesday, August 28, 2013, that he titled “People Don’t Understand My MS Symptoms” . . . “ I can understand how the symptoms of MS might be hard for people to understand because they have never experienced them and [they only ‘know’] what they have experienced themselves.”

He continues: “The goal in getting people to understand what we go through is . . . to put them in our shoes.

Why Don’t They Understand?
I generally agree with Matt who says “Based on that [lack of comprehension], I can say that people don’t understand what we are going through for one of two reasons;

1. we didn’t explain what we are feeling well enough or
2. they are not really trying to understand what we are telling them (this can even mean they simply are not listening to what we are trying to say . .

However, I believe there is a third reason:

3. We all base our understanding on our experiences.

It is impossible to describe a color to someone born without vision.  MS symptoms are very often a sensation we have never before felt.  When I first recognized something was wrong (later diagnosed as MS) the left side of my head and face had a sort of “tingling” or “numbness” of the kind that is close to the sensation resulting from a mild dose of the local anesthetic, Novocain.  But then again, not exactly.

 Novocain formula diagramDiagram of the Novocain formula from “Novocain®, PROCAINE HYDROCHLORIDE INJECTION, USP” at www.drugs.com/pro/novocain.html

So all we can do ourselves is try to think of way to explain how we are feeling the best we can because there is not too much we can do it make someone try to understand” . . .

The Difficulty
I personally related to Matt’s identification of the hardest things for people to understand: “The other day I asked friends on Facebook what the number one symptom they have a hard time making people understand is and I was flooded with responses!  The most common answers were fatigue, pain, and cognitive dysfunctions and I would have to agree!  A lot of people look at us or treat us like we are just lazy when we deal with fatigue but I can say this; It’s not even like we are just tired, it’s so much more than that!  I can be mentally wide awake but physically just dead. . .  Or vice versa.

People often compare your pain to whatever they have experienced.  If you tell them you have a burning sensation they say ‘oh, yeah, just the other day I burned myself on the stove’ like it is anything close to similar to what your experiencing. ‘Memory issues? Yeah I could not find my keys the other day, it happens to all of us.’  Thing is, it’s not anywhere near the same, there is just no other words to use to explain what we go through so we use words that to some mean something simple that they themselves have often experienced. But it’s not the same, we just don’t all know how to word it any differently.

I often disregard it when most people don’t ‘get it’ because I have learned not to waste my energy on explaining things to people who really do not care. I am done getting frustrated over the fact that they just don’t get it. The thing is, we all have people in our lives who need to understand, who should understand, who want to understand. Family, significant others, and close friends.

No One Can Hear You?!
As Matt lamented, “the frustration of not being able to express what you are feeling, the frustration of not knowing of any existing words to describe how you feel. It’s almost like a nightmare in which you are screaming for help but no sound comes out of your mouth, no one can hear you, your helpless.”

There Is Hope.
I once had a definitive experience to help people understand the kind of profound fatigue MS can cause:

Nails on a Chalk Board
Nails on a Chalk Board photo credit: Sharon Drummond 2010

I was lying on the sofa watching TV with the remote in my hand.  The program I had been watching ended and changed to The Jerry Springer Show that Bernard Goldberg‘s book 100 People Who Are Screwing Up America, called “TV’s lowest life-form.”  Not surprisingly, I cannot stand that tripe and absolutely did not even want to hear it, let alone watch it!  It was the equivalent of nails being scraped on a slate chalk board.

At that point, the fatigue brought on by MS kept me from mustering enough energy to put a finger on any button on the remote to either change the channel or turn off the TV.  I was trapped.  I could not change the channel.  My muscles worked but as much as I want to change the channel, the energy I needed to move the muscles in my hand just would not fire!  It was miserable but my wife rescued me and changed the channel before the show progressed much.

No matter how much I wanted it — and I wanted it a LOT, I could not summon the energy to move even my fingers.

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