Invisible Disease

So I'm sitting here at work, going out of my mind with boredom. Winter in Maine is not a hoppin' time in the tourism industry. I was complaining about how bored I am to @neenuh_bee and she suggested I write a blog.

Right. Because it's that easy. I'll just sit down and write words without any thought of content. That's a good way to keep people interested.

But now the pressure is on to come up with something worth saying. Otherwise, I'll look like the guy who can't work under pressure.

So what do I write about? I immediately went to my muse, Twitter, for inspiration. Did a couple hashtag searches, #mulscler, #FUms, #MSSucks to see what people were saying. During this, I realized people were having a conversation about my tweets. Brilliant! I'll blog about things people are already talking to me about!

There has been a conversation happening about how difficult it can be to express how you're feeling to a boss, coworker, friend, or family member who has never experienced any of the feelings we have. Things which seem so normal - so routine to us - are incomprehensible to someone who suffers from a Normal Life.

The key I've found is keeping my MS part of my ongoing, open conversation. Not that I sit around and just complain about shit all the time, but any time I notice something that might be out of the ordinary for a "norm," I mention it just as a matter-of-fact kinda thing.

No one really wants to be lectured, and no one wants to hear you bitch. But if you keep MS more on the level of "here's an interesting thing that happened to me" kinda thing, people will start to better understand the way the disease works for you without having to take 40 minutes for you to lecture them.

This way, once everyone kinda understands how you function on a normal basis, they'll be more empathetic when something more serious happens.

"Oh, your hands are usually numb and you work just fine. This must be exceptionally bad. I'm sorry to hear that."

Rather than, "Every one's hands fall asleep. Quit whining."

Keeping your "normals" out in the open is helpful to give people a scale on which to relate to you.

You have to remember that no one without this disease can understand what it's like. Only you can explain it to them... and prevent forest fires.

I hope this helps.
NickWithMS