My Awkward In-Pain Self
If you want to understand a person with a chronic condition, you have to step outside the comfort zone of rapid small-talk and the preoccupations of a pain-free life.
“What is a reasonable amount of pain to be in?”
For the last year I’ve been in pain. A condition I had when I was younger and thought was gone returned. I find myself again hostage to the time and labor of pain management.
“What is a reasonable amount of pain to be in?” I’ve been asking myself this question constantly in the past year. I ask myself this question as I try to complete the task of writing this story – chronic pain means always multitasking. I split my attention between what I’m doing and the pain that demands it. I concentrate and try to allow for the slowness you must abide by when you are forced to do everything with an undesired companion. This slowness requires a vigilance to pain, a vigilance that, while well intentioned may actually increase pain. Noticing the shallowing of breath. The trying to let go, to allow things to rest, only to have spasms that bring me back to the beginning of the cycle of finding the appropriate level of holding, of tone, of letting go in the unstable fluctuating state of it. The question is asking: is there a new baseline, a level of pain I could accept if it just didn’t exceed what I’ve deemed “reasonable.”
Managing a chronic condition is a process of getting closely acquainted with failure. There’s no cure for what I have and the medical treatment that does exist is often not very effective, or has side effects that may alleviate some pain but are shitty in other ways. Sometimes I choose continued pain because at least pain is familiar.
I do everything I can. I try everything the internet tells me, but nothing helps consistently. I’ve been desperately trying to avoid taking a medication that might make my hair fall out. It’s crazy how many people say things like, “That’s not so bad” or “wouldn't it be better than being in pain?” As if somehow not wanting my hair to fall out is simply a vanity and not an attempt to stave off my total conversion to identifying with and being identified by illness. My diet is so restricted I often just fear mealtimes and sometimes it seems like the most sensible option is to not eat at all. The cost of trying to manage my condition “naturally” is several hundred dollars a month. At the moment I have no income.
This pill that I'm avoiding whose potential side effects are terrifying is free through Medicaid (which I have nightmares about losing). Having medicaid requires a careful balancing of necessary precarity. In order to qualify you can’t make more than $16,100 a year, so in addition to making enough money to live, I have to be careful not to go over this number. I manage the shit out of almost every aspect of my life. My fear of starting this medication is that, like the many psychiatric medications I take, once I start I’ll never get off it, that I’ll become dependent on it and the modicum of freedom it gives me via an increased normalcy. Possessing a body that responds slightly less to the world as if every second was a complete emergency.