On Monday, my mother forwarded me a YouTube video of a doctor in Midland who had found the silver bullet for treating COVID-19. Apparently, he had used a nebulized steroid called budesonide with great results. Could my doctor try that with me?
I struggled with how to answer her.
Since Easter Sunday of this year, I have lived with COVID-19 symptoms but have never tested positive. As I write this on Day 87, I’m still struggling with shortness of breath, fever, fatigue, tachycardia, and a cough. Plus some unmentionable symptoms I am too delicate to share.
I didn’t know this before, but when you have a mysterious illness, you are immediately required to attend Internet Medical School.
About a month into my top-tier Google education, I joined a Facebook Group called Long-Haul COVID Fighters. When I joined, there were 862 members. Now there are 5,133. People all over the world are suffering for more than 80 days with COVID symptoms. The members commiserate and share insights from doctor visits along with tips for, well, not dying.
We also share articles.
We share articles from medical journals, major news outlets, and top researchers. For the first six weeks, when all I could do was lie on the couch trying to breathe, I read. I read and read and read. I read about T cells, ACE2 receptors, and cytokine storms. It dawned on me that my doctors were spending all their time treating patients and didn’t have bandwidth to research this novel virus as it was unfurling its awful feathers in real-time. Was I so arrogant as to believe I knew more about it than they did? I knew enough to be dangerous, that’s for sure.
I also knew enough to advocate for myself.
People in the Facebook group reported that cardiologists were finding heart damage in some COVID patients. I therefore sent a message to my PCP asking for a referral to a cardiologist, and the tests from that visit led to medication that has helped my tachycardia immensely.
When I found an urgent care place that offered antibody tests for both IgG AND IgM antibodies, I got myself an appointment. This led to an immediate CT scan, which led me to a pulmonologist. This led to an inhaler, which means I can now walk around my house without gasping for air.
In every one of these doctor’s offices, I have gently suggested that perhaps it would be prudent to assume I have COVID-19 after all, given my symptoms. I spent 45 minutes in bed one morning crafting a diplomatic email to my primary care physician outlining the research showing how problematic the testing is, linking helpful articles and news stories. I sent the first draft to my mom to make sure it didn’t sound too know-it-all or desperate before I sent it to my doctor.
My doctor never wrote me back.
However, I’m grateful for my PCP’s referrals to specialists. And I’m grateful for some symptom relief.
Internet University should also offer Diplomacy with People Who Have Real Diplomas as part of its core curriculum.
Back to my mother and her email about the nebulized budesonide. What could I even say to my pulmonologist? “I know I’ve tested negative for COVID, but could we try this method a guy out in Midland swears by just in case? I saw it on YouTube.” I may not be a doctor, but I can feel his skeptical and emphatic eye-roll from afar.
But you know what? Maybe I’ll send the email after all. Maybe if I decide I’d like to be able to jog again, or not run afternoon fevers again, or take a deep breath again, I’ll send the dang email. I’ll send it because I’m not too proud to appear a wee bit batty if it actually might work.
This is what our friends in the COVID community are up against all over the world, gentle reader — even those who have tested positive, even those who have “recovered” on paper but are still symptomatic weeks later. It’s a constant battle for information, an ever-present burden to be a pleasant and reasonable COVID-19 Ambassador of Goodwill to doctors, and, of course, a daily fight to feel better and maybe even heal.
Please be kind to us when you meet us.
And if you become one of us, well…welcome to the Class of 2020.
Julie Rhodes is a freelance writer and actor in the Dallas/Fort Worth area. She writes regularly for Madeworthy magazine and the Tanglewood Moms blog.