Advocate for yourself. Even if people think you’re a pain in the ass.

By: Loolwa Khazzoom, Founder, Dancing with Pain

October 4th, 2010 • Living with Chronic PainPrint Print

I’ve recently been in a situation where I’ve been self-advocating for disability accommodation. On the one hand, I did receive significant accommodation, for which I was most grateful, and one person in the mix is a total doll. On the other hand, my self-advocacy has been met with varying degrees of resistance and backlash, by one person in particular — whom I have to see much of every day where I live.

When I’m not well, when my life is crashing down around me, when my head is exploding…this is not the time that I really need someone yelling at me about how I’m basically a class-A asshole because I have the self-esteem and courage to request disability accommodation. Unfortunately I think it’s quite common for people to get angry at us for having an issue that makes them have to stop and think or do something a little bit differently.

Same with doctors: Many don’t want to have to think outside the box, to really really listen and evaluate our situation and figure out a tailored solution. They want to be able to scrunch us into the typical diagnosis and hand us a pill. And when we demand more, they project all kinds of crazy onto us.

I’m playing with developing some kind of psychic shield to keep out all the BS. I’m a very sensitive and empathetic person, and I care deeply about mutual understanding. When it’s not forthcoming, I can get pretty distressed, which in turn can jack up my pain. I’m working on getting stoic about it. Just accepting – as my uncle says, “yesh ve yesh.”  Which loosely translated means there are all kinds. When I encounter a douchebag, I have to accept it, bless the person, and psychically move on — staying focused on all the people who do get it, and staying grounded in who I am.

The bottom line: Advocate for yourself. Even if people think you’re a pain in the ass.



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