In the news a few years ago, there was a big debate on whether or not torture was an effective way to gain information from prisoners.
Once, during some of my worst pain, I had to fill out paperwork for a new headache specialist. I realized the next day that, when I was filling it out, I wrote things that weren't even true. It wasn't intentional, I just couldn't think through the pain.
This thought comes back to me often. It makes me think of the Spanish Inquisition and the torture those people had to endure, all to "save their souls". I can tell you that it wouldn't have taken all that long to make me a convert. If they want to make people talk, give them chronic migraines, at a "10" day after day, and they will tell you whatever you want, just to make the pain stop. I don't make light of the pain of others when I say that the only difference between then and now is that we are being tortured daily for no reason at all...
Imagine what it must be like to be a prisoner of war. Day after day you are held in a cell without light, without contact of other people, and knowing that at some point the pain will come. You will be suffering the agony of the torture. How bad will it be today??? When will it happen??? Is there a chance that a day could go by and you could actually feel "good". Good, in this case, is just a day with out being tortured. You still bear all the scars from the last session and the one before that; the scars haven't quite healed so everything is still fresh and raw. It is hard to live in the moment because even if there isn't any new pain, there is the anxiety that pain just around the corner, ready to start up once again...that knowledge just won't let you forget. With any sound or light change, it makes you flinch because it could be a sign of something coming. Will we get away without pain today??? If I make myself small, maybe it will forget me.
This isn't the story of someone in a prison camp. This is what a someone with chronic migraine disease faces day after day, every day. A day out of the "hole" doesn't mean we are feeling better, just less hellish. We don't know what it is like to be able to just wake up and go about our day. We wake up and the first thing we do is assess the damage and pain level. Everything we do has a consequence. Existing sometimes is all we can manage.
Being a victim of long term abuse from our own bodies takes a toll on us physically, emotionally, and mentally. We look to those around us to help us, to liberate us from our pain. Often we are treated as though we haven't been suffering at all. Often this treatment comes from those closest to us. Often, it comes from doctors. We are not easily treated; we are the exception to the rules. We want nothing more than to be freed of our prison and return to the life we had before this disease captured us. Many of us can't. But we'd give anything, if we could.