151. What An Emergency Hospital Stay Taught Me About Medical Mistrust

A fever with no diagnosis forced me to navigate the system I’ve spent years questioning.

A few years ago, at a welcome dinner held prior to a Medicating Normal screening in Virginia Beach, I found myself sitting across the table from Pulitzer Prize Finalist Robert Whitaker of Mad in America, distinguished ADHD researcher Gretchen LeFever Watson, PhD, and Dr. Sami Timimi, an adolescent psychiatrist and psychotherapist who does not hold back with his scathing criticism of the mental health industry.

We were discussing all things overmedication, psychiatric drug withdrawal, and the general failure of the American health system when I asked the three of them, “When is the last time you saw a doctor?”

They stared at me, silent, seemingly weighing the amount of information they wanted to reveal in front of colleagues.

I can’t remember who spoke first, but someone eventually piped up and said, “I haven’t seen a doctor in 20 years.”

“Same.”

“Me too.”

Then all three of them grinned, clearly pleased with each other and themselves.

Sami offered a bit more nuance, in light of a family member with breast cancer. “Look, if something happens, see a doctor. She found a lump, she’s getting treatment, and she’s in remission. But don’t go looking.”

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I remembered this conversation a few weeks ago while I was in the ER for the second time in 48 hours, listening to the on-call infectious disease doctor use words like “lumbar puncture.” I was on day eight of a 103+ fever, debilitating joint pain, and a headache that can only be described as feeling like someone was cutting my brain in half with a circular saw.

Having recently come back from the Costa Rican jungle, this Fever of Unknown Origin—aptly abbreviated to FUO, which felt more like it stood for Fucked Up into Oblivion—came on during a time when everyone in my life was out of town or otherwise unavailable, to the point where I asked a guy I casually dated at the beginning of the year and hadn’t talked to in months to see if he could bring me a pillow because the ER was, inexplicably, out of pillows, and it felt like my head was going to explode against the gurney.

I eventually acquired a pillow as part of a hospital bed at the world’s worst and most expensive hotel room, but by the time I got there, I’d spent a week riding out the illness mostly alone, ChatGPT-ing my way through the experience. On the morning I woke up with a distended stomach indicating the early stages of liver failure, ChatGPT was clear: go back to the ER. Now.

Holed up in the children’s ER, sans pillow, only smiling at the absurdity of being placed in the children’s ward for reasons that still aren’t clear to me.

Which brings us back to the lumbar puncture and the dinner table conversation from years ago.

Don’t go looking.

When you’ve spent the better part of nine years pulling at the thread of the medical and pharmaceutical industrial complex, there exists a deep skepticism and caution when dealing with medical professionals and “standard procedure.” I know too much, and also, I was dangerously sick and knew I would not get better without medical intervention.

I also knew that in a hospital setting, it is imperative to be your own advocate or have someone advocate for you. My medical team had no idea who they were dealing with, and I didn’t have a single interaction with a doctor during my time at the hospital that didn’t result in me pushing back or saying no to their recommendations. You might think this industrial-strength stupid given the circumstance, but even Fucked Up into Oblivion, I knew my body was unlikely to respond well to multiple interventions, I knew the overarching hospital motivation for treatment (reduce liability), and I knew that as long as I was conscious, I had a voice and I damn well better use it.

Mostly, I needed everyone to slow down. After having an bad reaction to intravenous doxycycline, they immediately tried to give me intravenous Rocephin. A deep, intuitive “NO” was out of my mouth before I even formed a thought, much to the surprise of the poor nurse just following directions. I can’t tell you why I knew this wasn’t the right call, only that every cell in my body put up a stop sign, and that when a nurse came back a few hours later with oral doxycycline, the stop signs didn’t appear.

A similar experience happened when the lumbar puncture was mentioned. I knew certain illnesses—like meningitis—could only be detected through a spinal tap. I also knew that at the point it was suggested, I could move my neck just enough to justify delaying the procedure. My intuition said not yet as opposed to a full-on STOP, but it was enough for me to convince the doctor to not go looking and at least wait for labs to come back.

I did not end up getting a lumbar puncture. I also never got a diagnosis. I was released after I’d stabilized for a few days, and have spent the past few weeks recovering at home. My body has struggled to recover from the cycle of doxycycline, which I can only attribute to being so sensitive in the wake of all my years of antidepressants, but given we never figured out what sort of infection I had, a world exists in which the antibiotic was exactly what I needed. Or maybe it was a virus all along, to which I wrecked my gut microbiome for nothing. I’ll never know.

What I do know is that my FUO did what all serious illness does and forced me to reevaluate my life. If you follow me on Instagram, you may have seen my post about taking an indefinite break from social media. When I was in the hospital, delirious from my boiling brain, I opened up my DMs to a slew of people begging me for withdrawal help (but refusing to pay for a consult) or simply trauma-dumping their psychiatric experience into my inbox. And I just couldn’t do it anymore. So I’m done. Maybe forever. Definitely for now.

As far as the newsletter, this platform is more insulated and, thanks to the kindness of 53 of the 2200 subscribers, actually brings in enough money to cover my water and trash bill. It is nowhere near enough to be livable, but it’s enough to feel the work is somewhat respected, a feeling I’ve never gotten with social media. So, now that my brain isn’t on fire anymore, I’ll be spending more time here. And if you’d like to support my work, click the button below. The generosity of the 53 of you is literally the only reason why I’m returning, so thank you, thank you, thank you.

Here’s to health and finding the fine line between not looking too hard, and looking just enough.