I know society says I am not supposed to talk about my pain, anxiety, and struggle. It is only appropriate to suffer gracefully and in silence.
prettily if possible.
I should be inspiring or invisible.
But I am not very good at either, so here we go.
I have chronic pain and fatigue. I have acute asthma/AERD. I have anxiety and depression, that could be situational. it’s hard to say….there are other things that impact my ability to cope but that is a long and tedious list so I will forgo that.
It has become increasingly difficult for me to do anything at all over the last few years….and I do mean anything. Right now I am having an asthma attack because I got up off the couch, walked into the bedroom, sat down on the bed, and plugged my kindle in to charge and write.
People tell me I am resilient these days, strong. It’s my most received compliment. But I am not strong, or resilient, or inspiring. I’m just a person struggling through this life. I get up every morning and do what I have to do, because it is what I have to do, not because I am stronger than anyone else…certainly not to inspire you.
Those of us stuck in the trenches of chronic illness and disability don’t feel super human strong, resilient, or inspiring. We don’t want to be your lesson in fortitude. When we receive compliments for merely existing* it feels at the very least well intended but patronizing, and sometimes downright hurtful, tokenizing, or harmful.**
Sometimes empty compliments like these seem to communicate “oh my, I find your life unimaginably horrible, I am so glad I do not have to live it. whooo.” As you can well imagine, that can be painful to hear.
Chronically ill and Disabled people are all different, complex, talented, damaged, beautiful…we all have different gifts and weaknesses. Many, if not most of us would much rather be complimented for our work or skills, for the people we are, than for simply not believing death would be better then the lives we have.
*h/t to Jena Gong for the verbiage
** there are some types of invisible or mental illness in which it may be appropriate to tell a person that they are strong and resilient for continuing to be alive, and they should not be discounted or erased either.