Thursday, December 28, 2017

How do you explain something no one can see?

I've been thinking recently that I may not be the best poster child for Meniere's disease. This thought comes from me being successful in a change of life situation.

Seriously, I may not be.

Sure, the hearing loss is obvious. I wear hearing devices, but so do many others. I still have times where hearing is a challenge. I likely always will. This is what people see.

Yet, there is so much more to this disease that no one can see. Add the fact that I am no longer having the major attacks. Even when I was, very few saw them. No one can see what a mess my head can be some days.

My boss and 1 co-worker got a glimpse yet only a small fraction of what I deal with. One day at the office, my brain fog was so bad, I had no idea how many days were in a certain month. Literally, no clue. I sat there saying "30 days hath September, April, June, and November...". My boss would talk to me and I would stare at her rather blankly. I apologized and told her she was seeing me in nearly my full glory that day.

This was the first day that I sort of opened up about my illness. I don't wear it on my sleeve. I prefer to be seen for what I can do, rather than what I can't.

My boss did ask a few questions about what I have and I answered them honestly. That's all I can do when asked. I think she understands, yet I am there to do my job, not be pitied.

But what about others I run into? They see me working my tail off, although no longer physically. They see me out and about. I drive. I work. I do things. I'm not bedridden. I don't use a cane or walker. I look "normal".

People may think I am antisocial when I don't drink, but do they think that there may be a health reason? Or how about when I ask about sodium content of foods? Or avoid (as much as possible) caffeine?  Maybe I am strange in their eyes. But because of an illness?

Sports activities are another area I wonder if people get it. I have always been an active guy, partly due to work in my prior life being physical. But now, unless everything is perfect, getting from point A to point B can be a challenge. But people don't and can't see that. What they see is me no longer willing to be part of a parent/child athletic event. They don't know why. I can tell them that I can't turn rapidly, but they can't see that. I often think that to get people to understand, I should push myself in those kinds of things to the point of vomiting due to being so nauseated from the rapid movements. It's like living in a constant state of motion sickness, yet not ever getting sick.

They don't see the cold sweats I get when faced with the prospect of climbing a step ladder. A simple step ladder. I used to climb silos!

In my current job, I run into people that I used to run into, but now I am on the other side of the desk. I get interesting looks when they see me there. They don't really know why I left my former career. Likely, they think I gave up. They didn't see me face down on the ground or in bed for hours.

I'm ok with people thinking what they think, yet I want them to understand.

I don't know how to do that.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

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