Is surviving inspiring?
Is it luck?
Is it coping?
Is it all there is?
Is it enough?
People with chronic pain/illness tend to get one of two responses:
- Disbelief, denial and dismissal– “you don’t look like you’re in pain”, “hope you feel better soon”, “hmm well the medications should be helping by now”, “you need to help yourself too”, “just remember of those less fortunate”, “try and stay positive”, “perhaps if you tried…”.
- Surprise and applause – “you look great, no one would know”, “you’re coping so well”, “I know I couldn’t cope”, “I don’t know how you do it”.
I’ve experienced every one of these statements and have been compared to and have compared myself to other people with chronic pain and even compared my past attempts at managing chronic pain (comparing myself with myself!!). And there is no good way of dealing with it, there is no right way, there are plenty of bad ways. A little like being a parent I suppose; everyone gets frustrated, everyone gets tired, everyone gets angry, everyone gives in, everyone tries, everyone starts again.
When faced with ship wreck it isn’t simply a case of sinking helplessly (drowning) or swimming off into the sunset heroism intact (waving), its just a matter of staying alive (hanging on?).
The problem is I don’t want to be coping well with chronic pain, I don’t want to be looking well considering and I don’t want to be inspiring others with my tales of illness. I don’t want any of it.
It feels a little bit like when I was told me my daughter was doing well at school “for a deaf child”. I don’t want her to do well considering, I want her to thrive regardless. If pain has to be part of my daily life experience, and it seems to have made up its mind thats its here to stay, I don’t want to just ‘cope’, I don’t want to just ‘survive’ it. I don’t want to hang on in there.
Survival for me is not really enough
Perhaps i’m just greedy?
Sometimes my nearest and dearest say “you’re amazing, I don’t know how you do it”. Which is said with great love and affection and I am grateful, really. But the truth is for me there is no other choice. I could retreat, stay at home, consume the painkillers, give up on things I enjoy in order for the pain to reside but then it wins and i’m too competitive to allow that. Or I could carry on ignoring it, increasing pain levels and frustration hoping to offset with other more obvious external gains-more work, more money, more consumption, more social life. Inside i’ve chosen the middle ground, with less valued and celebrated goals of feeling mediocre and relatively on top of every day life. This might sound insignificant to some but trust me when you’ve achieved neither for a long time, they’re pretty special.
I’ve read a lot of accounts of chronic pain/illness and most end with how someone overcame adversity and lived happily ever after. These sadden me. I don’t think thats a realistic expectation for many people with chronic pain/illness. One of the best documentaries i’ve ever watched was called “me and my mental illness’ on C5. It was great because people just told their stories, no solutions, no happy endings, no inspirational speeches, no message of positivity. Just acceptance of this is how it is, i’m trying hard, but it still sucks sometimes.
So here I am at sea caught in this storm, where I am neither waving with joy nor drowning. I’m just bobbing along one wave at time hoping one day i’ll either reach land or grow fins and a tail.
Maybe this is what acceptance is?