Taboo

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. 

conveniently. 

prettily if possible.

I should be inspiring or invisible. 

But I am not very good at either, so here we go. 

Let’s talk. 
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. 

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One thought on “Taboo

  1. That line, “…prettily, if possible” really landed with me. I was talking to a great nutritionist today about all this crap I carry around when it comes to weight and eating “healthy”. Being sick, too, has made it all so much harder. I’ve gotten much heavier, and so I deal with that, as well as being sick. And then they intertwine: am I getting worse because I’ve gotten heavier?

    I was at Costco the other day, and a young woman scooted by me on her own personalized scooter. So I mean here we have a) a person with their own scooter, signifying considerable difficulty with her body, and b) she’s young, still in her early twenties, which can’t be easy by any stretch, and yet I had to cringe when the first thought I had was, “Oh, wow. It would be easier to be sick if I were that beautiful.”

    I’m not defending this thought in ANY way, at all. I’m just saying, I’m human, there it was, that thought happened. And it wasn’t accurate, but it’s where my head went, for that brief split second. Reminded me of a conversation I had with my husband in text once: https://www.instagram.com/p/BMFHLxvlGsm/?taken-by=sewbiwan

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