Chapter 3: Does Not Bear Repeating
Mini Memoir
This is not the way I thought it would be
Thought it would be much lighter
This is not the way I thought it would be
Thought it would be much brighter
...
I thought it was once but it was again and again and again
-The Weepies
I took a comparative health care class in college. We started in the U.S. and then visited Vienna, Budapest, and Prague. It was 1993. The class was designed to compare medical care in “developed” countries (in this case, United States and Austria) to that in “under-developed” countries (which in 1993 happened to be Hungary and the Czech Republic). And yes, “developed” and “under-developed” are indeed the terms that were used at the time.
I understood the assignment. Like the good Stepford Student that I was, my final paper indicated so: “developed” health care = GOOD, “under-developed” health care = BAD. I took my “earned” A, the memories from my curated hospital tours and carefully selected (and as carefully not selected) set of assigned readings, and carried on with my life, secure in the knowledge that I lived in a nation with the best health care system in the world.
Years later, I got sick. And everything changed.
At first I felt lucky to be here in the good old U S of A. Something wasn’t right and I knew I could be fixed. My PCP was confident that although I’d been an early victim of the COVID-19 virus, the lingering fatigue and brain fog I was experiencing were due to a concussion I must have suffered somewhere along the way. If I thought about it hard enough, surely I would remember that I had hit my head at some point close to the time of infection.
Low and behold, ask me to recall such an incident and I will!
After conceding that sure, I probably had a concussion, we pursued that route for months. Never mind that over the course of 2020, more and more folks like me complained of lingering fatigue and brain fog after COVID-19 infections. Never mind that I had developed new symptoms in addition to the original brain fog and fatigue. Now dizziness, vertigo, and nausea were added to the list. (Migraines were a late breaking development; more on that later.) Good times!
Never mind that by mid-2020 we had a NAME for this complex of symptoms. Post-COVID-19 patients like me were calling themselves COVID long-haulers. There were a bunch of us. This was equal parts terrifying and exciting. I couldn’t wait to bring this news to my PCP. Surely she would be excited about helping me be sure that I had the right diagnosis and find the right treatments.
Between May 2020 and February 2021, on at least three occasions (and I believe there were more but I’ve only got three instances documented so we’ll go with that), I talked with my PCP about what I was learning from my sister (a respected medical doctor and researcher in her own right) and my own research about post-COVID-19 effects. I told her about how I believed my symptoms aligned with everything the collective we - patients with lived experience, providers on the front lines, virologists scrambling to do research - seemed to be learning.
My PCP’s response? DENY. DENY. DENY. Deny that my symptoms were as I described them. Deny that they had anything to do with my prior COVID-19 infection. Deny my requests for a COVID-19 antibody test (I never had a COVID-19 test back when I was first infected because they weren’t available at the time; that’s how early in the pandemic I was infected). Deny my requests for a referral to neurology. Deny my humanity as a patient. Deny my humanity as a person.
My response? Assume I must be crazy, of course! That's the tacit message my PCP seemed to be sending and I assumed it must be true. For months, I worked my concussion treatment plan. I am, after all, the very best of Stepford Students. A’s only, thank you very much.
Some of it helped. We know now that much of the treatment for concussion resembles treatments for Long COVID sufferers/survivors.
Eventually, though, I began to wonder if my PCP went home to a different world from the one I was living in. Surely, she had access to the same information I was reading about what we eventually knew was the very real and very scary condition called Long COVID. What did she have to lose by considering the possibility that I might have it?
This is not the way I thought it would be
Thought it would be much lighter
This is not the way I thought it would be
Thought it would be much brighter
...
I thought it was once but it was again and again and again
-The Weepies
Where was this GREATEST IN THE WORLD health care system that was supposed to be my birthright? Why did I leave every appointment feeling less certain about symptoms I knew I was having than I'd been when I'd arrived? The veil of naïve stupidity that had protected me from reality for the prior 30 years was finally being lifted. I needed a new PCP. STAT.
As if some fairy godmother had plucked my most fervent wish from the clouds, around this time I learned that my beloved local abortion provider - Mabel Wadsworth Center - one of few remaining wholly independent abortion providers left in the country, free from the shackles of corrupt politicians, had expanded their services and begun offering primary care to patients.
Sign me the fuck up!
Now, I’d been a patient at Mabel Wadsworth for a while already. As a childfree person with an uncomplicated gynecological history, I historically hadn’t had much need for an OB/GYN specialist but I knew that for every privately insured person Mabel’s saw, they could provide services for three low-income clients. So, I’d been going there for GYN care for years but this primary care thing changed everything.
Mabel Wadsworth Center saved my life. I don’t care if that sounds melodramatic. It’s true. But even Mabel’s can’t protect its patients from the wild West that is healthcare in rural ‘merica. We’ve got some incredible providers here in the hinterlands. And we’ve got some real duds. Next stop: a local neurologist.
My new PCP made that neurology referral I’d been asking for immediately. She listened to me. She heard me. And - get this - she TRUSTED me and she BELIEVED me! She treated me like a partner in my journey toward wellness. She made it clear that my health and wellbeing were the priority. It didn’t matter who was right or wrong about my diagnosis. What mattered was that I get the help that I needed.
But this wouldn’t be a Long COVID story if it ended on this happy note so let’s just say that my very first neurology appointment, a local one, did not go according to plan. At least not according to my plan. Because I hadn’t planned:
For the neurologist’s first question on meeting me to be, “So who are you trying to sue?” You see, he’d read my chart which included my previous PCP’s assessment that what I really had was a concussion and, apparently, reached the conclusion that I must be out for cold, hard cash.
For the neurologist to refuse to allow my husband into the exam room, despite my having gained explicit permission from the clinic in advance to have him there and despite my THREE requests to bring him in during the exam. The neurologist’s response, each of those three times when I asked? “We don’t need him in here.”
For the neurologist to tell me that, “To be honest, in every case I’ve seen of people claiming to have long-haul COVID, it’s just mental health issues.”
For the neurologist to discover during the exam that I am an established researcher, respected author, and professor (you can call me Doctor, Doctor) and then suddenly change his tune, suggesting I should begin tracking symptoms daily in a journal (I was already doing this) and that we could collaborate, patient and provider, on ground-breaking research about long-haul COVID. Apparently I was no longer a money-grabbing faker with a case of the lady vapors; I know words!
For the neurologist to creepily rub my back on our way out of his office while saying to me, “Don’t worry. You’ll be fine. You’ll see. One day, you’ll just wake up and find your symptoms are gone.”
That was in May 2021. In addition to the symptoms that have yet to magically disappear, I now have lingering feelings of ick from that creepy backrub. I sometimes wonder what that neurologist would have to say to me if he saw me today. Of course, I’ll never wonder enough to ever want to see him again.
This is not the way I thought it would be
Thought it would be much lighter
This is not the way I thought it would be
Thought it would be much brighter
...
I thought it was once but it was again and again and again
-The Weepies
Dear Amy,
Your account brings backs memories and it has moved me to tears. If we are not believed, what is happening to so many others with Long COVID? Sending you a message.