It was about this time three years ago when the “you got, ‘Rona” jokes stopped coming.
My symptoms had transitioned from intense fatigue into a tightness around my chest and March 24th was the first day I began waking up gasping for air. The 25th was the day I knew this wasn’t the kind of sickness I’d experienced before. By the 30th, I could feel the chaos and confusion in my body. It wasn’t that it was the worst sickness I’d ever experienced, it was that something felt deeply wrong.
It is a strange thing, and a thing I hope I never have to do again: be a new and strange kind of terrifying sick in a time and place where you are so isolated and so without resources. No hospitals or Drs. - at that point - wanted to see a 38-year-old woman - no matter her oxygen stats. These were the early days - no tests, no awareness yet that Covid was not going to discriminate based on age. “Stay home” they would tell me. I kept reaching out. Kept explaining - that something was deeply wrong, but everything was a moving target. “Stay home. You don’t need to worry unless…” and then unless would happen. So I’d call again. “Well. Nothing we can do anyway, so just stay home. Call us if xyz happens.” XYZ would happen. “Well…just stay home. Don’t go to the hospital. You’re young. You’re healthy. Stay home.”
So I did. I stayed at home alone. Leaving the door unlocked at night in case EMS needed to get in at some point. Afraid to sleep because my breathing had developed a bad habit of stopping.
They were worried enough to send me to Clinic set up in a parking lot. No tests of course - only for first responders, but they tested me for everything else. I remember a nurse taking my blood pressure in a hazmat suit in a popup tent. I remember her taking it again. And then again. She knew I was watching so she turned to me and assured me the machine must be broken. Nothing to worry about. “You’re young and healthy.” (If I had a dollar…)I. didn’t know then what 174/100 meant, but now I’m familiar with these numbers. I’m sure that the machine was not, in fact, broken. It is a sad and strange reality - these numbers aren’t unusual or even that ‘bad’ for me anymore.
“You’ll feel better in a couple of weeks.” Spoiler alert: in a few weeks I did not feel better. I just felt different. And I have continued to feel different-not-better for 36 months now.
It was a strange thing - being in that first wave of Covid and having no real evidence that you had Covid. No tests. No resources. No one to talk you through it. No dr who would even see you.
But it was a stranger thing - being in the first wave of Long Haulers. We didn’t know that term then. Long Covid wasn’t a real thing yet. So, I just kept pushing, (as I was instructed by drs). “You just need to exercise,” I was told. “Your heart is just severely de-conditioned.” No one seemed to think that was strange for someone so “young and healthy.”
Thank GOD for wise and well-read friends who believed me before I even believed myself. Friends who challenged me to listen and believe myself. Who assured me something was wrong, even before I was sure something was wrong.
It’s no one’s fault. It’s no one’s fault that we didn’t know anything about Covid then. No one’s fault that we didn’t understand Long Covid or how it might present.
But: the arrogance. The absolute unwillingness to acknowledge that something might be happening that we did not understand, that a virus could move and behave in a new way. The absolute unwillingness to listen to a patient and believe her when she said - something is wrong; the failure to consider that maybe she had access to information about what was happening in her body that was worth hearing.
I know how to spot them now - and I am ruthless about eliminating them: medical professionals who behave as if we know and understand the fullness of what there is to know about the body. Wellness experts who offer cures.
We understand the body, it seems to me, about the way we understand the universe. We know what it has shown us, and we know what we can see - but there are a million secrets we don’t even know that we don’t know.
This time last year I first met my Long Covid Dr. And he sat in a room with me for over two hours listening to my story. And he asked me question after question - as if he wanted to learn from me. He asked me: “what have you diagnosed yourself with as you’ve researched?” He asked me that because he thought I might have insight.
To this day - when we meet - he asks me what studies I have been reading and we exchange information.
There are people who “listen” because they want you to feel heard - as if it’s something you need. And there are those who listen because they want to hear what you have to say; because they think you have information. I’ve learned that those who attempt the first kind of listening leave me feeling alone and unheard. I’ve learned that when you aim for the second kind of listening, you will inevitably accomplish the first as well.
He was an ER dr during Covid and he left to start the Long Covid Clinic here in Austin. When I complained to him about my most recent ER visit he had such humility as he tried to make sense of my experience for me.
“I told them I had Dysautonomia from Long Covid, and they didn’t even know what that meant!” He shrugged apologetically. “I didn’t know either three years ago. We barely touch on it in medical school.”
“They acted like I was dying!”
“Well, that’s what those vitals mean to them. That’s what a temperature that low means.”
“Well, it didn’t. Cause I’m not dead. What else could it mean?” He shrugged again. “Nothing. It’s never meant anything else in our experience. In all of medical history a temp that low has always meant your organs are shutting down. It just…no longer means that.”
Covid has changed the rules. Oxygen stats that used to mean death, blood pressure that meant a stroke, temperatures that meant sepsis - these things are no longer absolute.
I love my Long Covid Dr. I told him when we met last that I don’t know how to say thank you. Not because I finally met someone who listened to my story and knew to test me for Small Fiber Neuropathy and diagnose me with Dysautonomia and explain to me what was happening in my body. But because the power of being believed is a hard power to articulate. The sensation of feeling like someone is with you in it - it’s irreplaceable.
I am one of the lucky Long Haulers. Not because my symptoms have eased - that doesn’t seem to be the case - but because I have people in my life who believe me. Who care for me. Who move toward me and are willing to learn with me the tricky turns of an invisible, chronic illness.
It’s not perfect. I still feel alone a lot of days. I still don’t know how to navigate work, or how to know when to set boundaries when all of it seems too much.
But on this third anniversary - I know this: all that Long Covid has taken from me - it has not taken me. I am learning and existing and finding life and love here.
Lean in. Listen to your body and listen to the body of those around you. We are complicated and glorious creatures, worth believing.
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Dear Fabs - you are so often in our thoughts. Praying for your health to improve and your quality of life. It’s impossible for us to understand what you’re going through but such wonderful news that you have finally found a doctor who does. You are an inspiration to all of us and we send you all our love and hope that things will get better for you soon. Stay strong. Much love Rosemary xxxx❤️❤️😘
Beautiful writing as always Fabs - so sorry you are still dealing with this but you are an inspiration to others also suffering with long covid ..