When I Say I'm 'Fine,' I'm Not in Denial About Being Sick

As I hurried off to class, suddenly, I knew things were awry – it was that strange and all too familiar feeling in my head that foretells a drop attack.

Defiantly, I ignored it, kept running upstairs to the lecture hall, and made it all the way to the door without any issues. But after a few steps in the classroom, sure enough, my legs went completely limp, and I collapsed on the floor in front of everyone.

“Are you OK?” my professor asked, clearly alarmed.

“Yeah.” I stood up, totally unperturbed, as I brushed off my now-bruised knees. “I’m fine.”

And then there I was, nonchalantly taking a seat and going to class as if nothing had happened — as if it’s not a big deal that my legs had literally stopped responding to my brain.

As I exhaled and opened my class notes, I told myself, “I’m fine.”

Because I was in the middle of a flare-up, I didn’t retain anything my professor talked about. Pediatric acute-onset neuropsychiatric syndrome (PANS) is an autoimmune disease that leads to all sorts of psychiatric and neurological symptoms, including severe cognitive problems. Although I was a straight-A student, that day, my brain was so inflamed that I couldn’t put together my professor’s words into anything I could interpret.  In times like that, it’s as if someone has replaced my sharp intellect with a bowl of jello. I was there in class physically, but mentally, I was lost inside a malfunctioning brain. But hey, at least I’d shown up!

“This is fine,” I said.

After 11 years of PANS and Lyme, I don’t even remember what’s typical anymore. I don’t bat an eye if I suddenly have involuntary movements all over my body, if I can’t speak, and if I hallucinate. Most of the time, I don’t think much about the 20 pills I take each day and my after school trips to doctors and infusion centers to get treatment. This is all just a normal part of my life that I don’t give a second thought.

I strongly believe that the way I’ve made it through over a decade of illness is that I constantly tell myself I’m fine. It’s not that I’m in denial of being sick — it’s an assurance that PANS and Lyme don’t define me.

When I say I’m fine, I mean that I’m still fighting, still hoping, and still trying to live as much as I can despite my conditions.

When my diseases flare, as they were that week, I have a sense that I’m alive, yet no longer part of my own life. PANS and Lyme steal everything that makes me myself: my personality, my sense of humor, my love of living. My diseases transform me into a miserable creature that is too depressed to even look at my homework, much less to do it. They make me afraid of seeing my friends. They shut down my mind, so I cannot read my textbooks. They trigger me into running out of the house in a panic attack over the mere thought of surviving another week of school. Nevertheless, I take my medicine, dry the tears, and go back to class the next day, over and over and over again.

When I pull myself together and carry on as best I can while my immune system attacks my brain, I’m declaring that PANS and Lyme won’t ruin my life. When I’m flaring, and I feel like someone else on the inside, the life I keep living on the outside is a reminder that the real me is still in there somewhere – and will one day resurface. When I say I’m fine, I mean that I’m not giving up on someday getting well.

These days, I’m doing so much better, and a few weeks after the drop attack incident, I even graduated college! However, like a shadow, my illnesses are still looming in the background, threatening to return and completely kidnap me again. I know that if I catch a virus or another infection, it could cause PANS to return and inflame my brain, as it too often does. Nevertheless, thinking about how disturbing this is would make me too unsettled to enjoy being well. Right now, I have to keep assuring myself that I truly am fine, in order to focus on the fact that I’m better…At least for the time being.

I’m a survivor of two diseases that can take away my very self and have tried to kill my spirit. PANS and Lyme haven’t defeated me thus far, and I do all I can to make sure they never will. And so, I’ll keep telling myself again and again, “I’m fine.”

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Gettyimage by: Victor_Tongdee

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