And you want to know the worst thing about pain? It doesn't show.
For more than four years I have lived with pain. Pain in the skin of my face. Pain in the bones of my face. Pain in my teeth and deep in my ears. Pain in my eyeballs and inside my nose. Pain in my tongue. And it is loud. The autoimmune disease(s) I have can do all kinds of horrible things to the human body: destroy muscle, attack the heart, attack the digestive system or lungs, create kidney or liver damage. In my case, although I have other issues going on, my main symptom is pain.
I take narcotics three times a day. Four times a day I take an anti-seizure medication even though I don't have seizures. That's because anti-seizure medications can relieve nerve pain and what I have is nerve pain, also known as neuropathy. That is just about the hardest type of pain to ease or suppress.
This fact was brought home to me very pointedly early in my illness when I was called by the young resident who had helped examine me at the nearest Big City University Medical Center. She rattled off test results brightly, telling me that I wasn't dying and that I didn't need much in the way of medical care. I kept stopping her. 'What about the pain?' I'd ask. 'What are you going to do about the pain? It's killing me. I can't sleep. I can't eat. I can't stand noise or light or touch.'
My voice may have risen just a bit. I may have sounded just a teensy-weensy bit psycho-killer wild. Because she stopped being bright-medica- student-reading-what-the-rea- doctor-wrote and just sort of shrieked at me through the phone: 'Look, you have nerve pain! There's nothing to do about nerve pain. There's no way to fix what's causing it. Nobody can make it better, and it's going to get worse and worse as long as you live!'
Bedside manner indeed. Good thing she wasn't expecting a tip.
Ok, that was four years ago. I've learned a lot since then. And like I said early on, one of the worst parts of pain is that it doesn't show. Say you feel like some giant, rabid, NFL player-trained pitbull is trapped inside your face and a tiny little kitten is being dangled on the outside. Say you haven't had a shower in two days because water hitting your face/head/upper body feels like the pitbull has invited friends over. Now say you have to go to the grocery store because you are out of caffeine and chocolate and ice cream and other soothing things. So you make sure you aren't naked and you go to the store and you walk down the aisles feeling the pitbull eating your eyeballs and right in front of the yogurt aisle you run into somebody you haven't seen in ages.
She is thin. Her hair is clean. Her clothes match and none of them are on inside out. And she looks at you and blinks and says 'Oh my, I heard you were sick, but you look just wonderful! Look at all that wonderful color in your cheeks! And if you lost any weight you've got it all back now, don't you?' And you make some sort of noise and try desperately to remember why you are standing in front of the yogurt section when ice cream is two aisles over.
Now imagine if pain showed. If you got purple spots or big green circles or maybe little contorted letters on your forehead that would say something like 'PAINNNNNNNNNNNNN'. She would see it and instantly know to turn down the feminine products aisle to avoid you. Both of you would be happier.
But no. Pain doesn't show. Somehow evolution lets us down.
Little children are sometimes born who lack the ability feel pain. They bite their tongues off sometimes once they get teeth because they can't feel themselves doing it. They never learn not to put their little hands on stove burners because they don't feel pain from burns. They may break a leg and continue to walk around on it, because nothing hurts. Many of them die young. Somehow evolution lets them down.
On the whole, the human race needs a little pain. It keeps things in perspective. But when it's chronic it can become a creature with a life of its own. It comes between us and life the way it used to be. It turns us into people we never, ever wanted to be. Friends slip away. The people who love us cry at night when we are supposed to be sleeping because they know how bad we hurt. Hobbies, careers, interests can slip away. Weeks can be lost to a haze of pain.
Like I said, pain sucks. When it rages, we hide. But there are sweet moments even in the middle of a chronic life. When the pain slips into a brief and unexpected sleep, life rushes in again. We race out into the world shouting 'I don't hurt! I don't hurt! Hurry, let's live before it comes back!'