At a talk I gave in Pittsburgh in April 2017, a young woman asked me afterward: “What was the worst part? Worse than the pain even? What odds were most against you? I don’t mean being a woman, or a woman of color, or things like that, but what were the most personal things that you had against you?”
Before I could argue those very elements of identity she mentioned were personal, I realized she was far from done.
“You see, I’m very ill and at dead ends,” she said to me, tearing up. “I have big things going against me. My family for one. Money for two. Sometimes it’s worse than the pain actually.”
I nodded. And nodded.
Anyone who has ever had chronic illness knows people will speak of your “support system.” Family, friends. I had the latter, but the former was questionable at times. I only approach it as much as I can here — as much as I did to this young woman also — because of my culture. I am Iranian American and my parents, while old, are still living. I am conscious of the fact that I am not telling their whole story — including some of the less forgivable ways they dealt with my illness. But I want this space to exist here, too, this absence, that for the most part my family was not always part of my support system.
Not my chosen one at least. A dozen friends, which later became a half dozen, which is now a handful at best, became the real family. Some of them have Lyme, some of them have only heard of it through me. But they know it inside out. They hear me, they believe me.
And the deal with so many chronic illnesses is that most people won’t want to believe you. They will tell you that you look great, that it might be in your head only, that it is likely stress, that everything will be okay. None of these are the right things to say to someone whose entire existence is a fairly consistent torture of the body and mind. They say it because they are well-intentioned usually, because they wish you the best, but they also say it because you make them uncomfortable. Your existence is evidence of death, and no one needs to keep seeing that — especially not the people who gave birth to you. They are not supposed to live to see you not live. It’s not the way nature is supposed to work, after all. (And yet nature looks that way all the time — it’s just our morality transposed on nature that requires it be benevolent.)
Only at times, might they really see you. When my mother admitted she saw me as sick, I cried for hours. She thought she had done something wrong, but I let her know it was the opposite. To be seen, to be heard, to exist wholly, whether in beauty or ugliness, by a parent often felt like another big step to wellness. I experienced it rarely, but when I did, I felt something light in me that I had long thought had burnt out.
I think in the case of my parents shame about money came into the picture often too. If my parents could not support me, how could they support a monster illness? They were of an immigrant group that was supposed to be bringing riches to the United States with them after all. But this was not them. They watched me spend every penny I’d saved on figuring out what was wrong with me — often to no end. And even when I found out what it was and figured out how to crowdfund the costs — the only way I was able to pay for this impossibly expensive journey — my public calls for donations embarrassed them. At times, friends have sent me money and I know they know this. I avoid crowdfunding these days, trying hard to stay afloat by working many jobs — though I know that working many jobs is what makes me sicker — and they often imagine I am now well, even as I go in and out of hospitals, even though I often walk with a cane and use wheelchairs at airports.