CULTURE & ARTS
05/31/2018 11:48 am ET Updated May 31, 2018

Does My Disease Need A Name?

Living with an undiagnosed chronic illness.
Priscilla Frank/HuffPost

Excerpted from Sick: A Memoir.


About midway into the winter the “offness” confirmed itself. Ryan and I had begun drinking and smoking again. Those habits were coupled with extreme poverty ― weeks where my adjunct salary and his Citigroup temping meant $10 between us for groceries. We’d decided to move out of the tiny Park Slope apartment where we shared a full bed in a room that barely had room for more. We moved farther out in Brooklyn, to Kensington, which was not that far from Coney Island, but many Manhattans and Brooklyns away from anyone we knew at the time. We delighted in the first floor of an odd Victorian we inhabited and made up stories about the doctor who owned the building and lived upstairs. We tried to make the space beautiful with what little we had, but by February I knew we were both in trouble.

We couldn’t afford our life in New York. We were both working too hard for little money. We were starting to grow sick of each other. The space was starting to show its cracks, first roaches, then mice, then the smell of mold everywhere. And the certain sickness I had been feeling again began to assert itself. I focused on us quitting smoking and drinking as a way to boost health. But I began keeping a diary of my sleep schedule and it started to show its patterns: instead of the old abrupt insomnia, now the hours whittled themselves away sleekly, my bedtime growing slimmer and slimmer. The cycles of depression and anxiety were creeping in again. I finally confessed it to Ryan.

“Well, what do you think it is? You got over it last time. I was part of that.”

I didn’t know what to tell him, but we both knew I couldn’t go down that path again. I called up my UCLA neuropsychiatrist and asked for Neurontin again, which he seemed fine with supplying, not knowing I had ever stopped. The truth was I went on and off these meds with little faith in them ― away just long enough to know addiction was not an issue, and back just long enough to know they could work again. There was little logic in my patterns ― but it was not a problem, I told myself, as long as I did not obsess over them again.

I found a local acupuncturist and started going there religiously. She saw a lot wrong with my system, and at one point referred to an illness inside me that like a dragon sometimes slept and sometimes awoke.

“But what is it?” I asked.

She shrugged. “Does it need a name?”

I wondered about that. A part of me felt like it absolutely did need a name, that that had been a missing element of my life now for years ― this odd sense that something no one had found was very off, that it might forever go unannounced. Another part of me thought I understood her ― what would be the use? More doctors, more pills, more money, more roller coastering through the medical system? When did knowledge actually help in this area? I really didn’t know what the right path was, but I decided to follow her alternative one.

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I got a bit better, then I got much worse. By the late spring of 2008, just as some of my psychiatric issues got under control, I started to get fevers, high ones. At the time I was full of excitement because I’d just been awarded a proper teaching position a state away at Bucknell University, a visiting assistant professorship that would pay three times the most I’ve ever made, plus health insurance for both Ryan and me and our own big house in the middle of the woods. This excitement made it such that I didn’t notice at first that I was dropping weight and running high fevers. It took Ryan forcing a thermometer on me, noticing my face had been very flushed for days, that I was talking rapidly, that I had been sweating through the sheets.

The fever turned out to be alarmingly high, nearly 104, and it did not go away for many days, even with multiple fever reducers. We didn’t yet have health insurance of any kind, so we went to a small clinic nearby with modest fees and they referred us directly to the ER. I tried to convince them I couldn’t go, mentioning I would have proper health insurance in a few months and could look into things then. But the nurse was adamant that I had a serious problem and it needed to be addressed now. I told her I had no way of paying for the ER, and she lowered her voice and told me to go without ID and they couldn’t refuse to see me.

The ER it was. They ran blood tests and some things were off ― most notably my thyroid. The doctor told me I should see my GP and my endocrinologist but I told him I had neither, I didn’t even have insurance, and that I’d be best off just ignoring it.

He told me I could not do that, that there were indications of thyroiditis and something autoimmune related, and that they’d have to keep an eye on it. I’d have to come back to the ER.

I’ve never quite been able to recall it with any clarity, but I have a hazy recollection of someone in that hospital saying something to me about Lyme. Some days when I think back to this half memory, I think I must have made it up ― that I want it to have come up then, another opportunity for help, another light in the path ― but I still can’t dig up enough to tell me one way or another. There was perhaps a thought of it ― in fact, there was reason to suspect that what looked like autoimmune thyroiditis then was Lyme. But this would not be pursued until years later, when my Lyme doctor found out that Lyme tended to attack my hormones and blood sugar the most ― that the endocrinological was my most vulnerable area.

The next few weeks were a blur of battling fevers from bed, daydreaming of our new life in Pennsylvania, fielding interview requests from my phone, deliriously responding to emails, and eating whatever ambitious nutrient-rich meals Ryan put in front of me.

“It’s weird that there is not a real name for what is wrong with you and yet something is,” he said at one point, watching me eat his soup.

“I’ve always known something was off.”

“Is this how you felt that summer?” He meant that awful summer before we met.

I told him I wasn’t sure, and I’m truly not. I was a drug addict then. A huge insomniac. I was depressed and anxious. I always thought there was something physical at the root of it, but no one had found it, so I was resigned to thinking it had been created in the mind. I was OK with it even.

I was, after all, someone who created in the mind.

I slowly inched my way back to health the next few months. Ryan and I packed up the apartment in preparation for our new life, one that luckily would only be three hours away from this old life that we were not altogether done with. We hadn’t mastered New York, not even slightly. But opportunity had come. For Ryan it meant he could go back to school and get closer to a college degree ― college classes would be free for him since I was a professor. In the house we were renting he’d have large studio space for his art. He promised he’d get a job, but he also promised he’d help around the house while I got used to teaching full-time, with a real salary, a real office, actual colleagues I went to meetings with and sat on committees alongside. Things were happening for us.

The day we packed the U-Haul, my fever spiked suddenly to 104. Ryan begged me to stop by the hospital again but I refused.

“It comes and goes, this thing I have,” I insisted. “I have to live with it.”

“But what is it? We need to know what it is.”

I thought of the acupuncturist and closed my eyes as if to will the fever away magically, and I repeated her words: “Does it need a name?”

From the book Sick by Porochista Khakpour, out June 5. Copyright © 2018 by Porochista Khakpour. Reprinted courtesy of Harper Perennial, an imprint of HarperCollins Publishers.

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