Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet. These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.
Did you know there are an estimated 100 million people in the US who live with chronic pain? That’s about 30% of the population. Look around…is there someone in the room with you? Maybe a couple of people? Chances are someone is living with a condition that is invisible yet painful.
People often ask me what it feels like to have Trigeminal Neuralgia. Well, the best description that I can give is to imagine having a badly infected or abscessed tooth on your left side. Now imagine that every tooth on that side is infected. And someone is using a screwdriver on your cheekbone. And someone else is bonking on your cheek with one of those little brown rubber mallets doctors use to check reflexes. Oh, and did I mention the scraping? The feeling that your skin is being pulled down and off your face?
“It’s kinda like that,” I say.
And often I receive the same response: “But you look good…”
Now don’t get me wrong, I wouldn’t like it if someone said to me, “yeah and you look like crap”, but in a way the lack of outward physical identifiers kind of makes living with chronic pain worse. It’s like you feel the need to convince people that there’s something really wrong with you. Okay, I have an extensive wardrobe and I’m usually in heels of some sort. And then there’s my coat addiction (I said “coat”). But that is part of the facade that I create for myself when I’m out in public. What people don’t see is the “me” in mismatched PJs with crazy bedhead and an ashen pallor that I normally encounter when I look in the mirror.
For me, at least, making an effort to look fairly nice when I’m out in public is one of the few vestiges of the pre-pain me and part of how I try to get one over on the “suicide disease”. People with TN often refer to themselves as “warriors” and it’s an apt name. We hide in plain site all the while engaging in a war that no one can see – the battle to just get through the day, or the hour, or the minute and the hope that you can conquer the pain at least for a little while. Would a trade my cute sweaters, heels and coats to be pain free for just one day? Absolutely. Okay maybe not all of my coats, but most of them. The ones that no longer fit, for sure. And maybe the black faux fut Ellen Tracy number that looked a little more hooker than haute couture. I’d trade them in a heartbeat.