We all know that MS is a complicated illness to live with… so how do we even begin to explain it to our family and friends???
There is a very popular article called “The Spoon Theory.”1 If you haven’t read it, I suggest you read it soon and share with those who you would like to explain MS to.
People also use other analogies when describing MS. Such as – A wire… something cuts through the outer coating of the wire, leaving the actual wire exposed… this is used as an example of what happens to the myelin when it is attached, and the actual wire, is your nerve being exposed (the wire coating being the myelin).
What I have come to understand by living with MS is that when people have a “general” idea of MS… they believe that you are only affected by MS when you’re in a flare. But that isn’t the case for most of us… Just because others have a general concept of what MS is… that doesn’t explain to them the symptoms that come along with the damage that has been done to our Central Nervous System.
Spasticity/Tremor & Fatigue seem to affect me the most. Along with Neuropathy (Nerve Pain). One thing I find VERY difficult to describe is the “MS Hug”. I guess the best I have come up with is getting squeezed in a big hug by the Hulk, or something in that general area.
So, for all of these symptoms that we suffer from due to the damage done by MS… those medications have side effects.
I don’t think everyone can grasp the concept of “I’m tired” … coming from someone with MS. I especially don’t feel that they can compare how they feel to how we’re feeling, like it is relatively close. I’m tired ALL the time. I take Fatigue medicine just to be awake during the day, but then you add on the side effects of say my Spasticity medicine, that causes drowsiness.
Another thing that is difficult for me to really have people understand, is that MS is different for every single person diagnosed. Kind of like a snowflake, we all have something in common… but none of us are identical with the things MS does to us and how it makes us feel.
I’ve had to explain to strangers WHY I’m using a Handicapped Parking Spot…. That conversation began when someone yelled at me, “How DARE you abuse your grandparents parking pass like that! You should be ashamed!!” So, I’m getting out of the my car during this… once I’m fully out of my car, I have my cane by my side… this person decides to high tail it far away from me as fast as possible!
Needless to say, I think there is a misconception that makes some people believe MS means your in a wheelchair, or in some other way it “shows” that you are disabled in a way, or have an illness. Now I know that first being diagnosed, a lot of people first think “Am I going to end up in a wheel chair???” … Well, obviously, no one can answer that question for you, because no one can predict the future or how your MS will treat you. When I was diagnosed at 22, a few months later I was in a wheel chair. I’m not anymore. I’ve had to use every assistive device you can think of, but it’s not all day every day like when I was in my flare, it just depends on how I’m feeling that day/time.
A lot of my friends will see me when I’m having a “Bad MS Day”… the day before I “appeared” perfectly fine. That’s another misconception. Just because I was fine last week, yesterday… heck even that morning, doesn’t mean I’m going to stay that way.
The people who have been around me enough, know that when I stopped talking about something mid sentence… it’s not because I am off day dreaming… I just forgot what I was going to say… or just can’t find the word I want to use, so I start stuttering… Sound familiar? I’m thankful that my close family and friends help me find the word I’m looking for, or just wait for me to figure out what I was trying to say. Sometimes an hour later I remember – and I just jump right back in to a conversation with what I meant to say in the first place.
The thing is, MS is soooo different for every single one of us. There isn’t someone who could be like a “spokesperson” for MS… because not ONE person can speak on behalf of what MS is like for ALL of us.
You will also learn, if you haven’t already, to frequently say “I’m fine” when someone asks how you’re doing – even when you’re not. It’s just easier than trying to explain it to someone, who probably was just asking you how you were feeling out of common courtesy.
I know I’m rambling right now, I’m just going to blame that on my MS… just sayin’.
Hope everyone enjoyed my blog/rant! Let me know how you describe MS to others and how you’re feeling! I’de love to hear how others handle this situation.
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**Originally Published on MultipleSclerosis.net**