I I have spent my career studying infectious diseases that fall under the category of neglected tropical diseases. Now I have a neglected disease – Long Covid – an incurable disease (for now and for me).
As a medical anthropologist working in global health, I thought I understood the despair that comes with poor health. I did not do it. I join 7% of the American adult population – or around 18 million Americans – who have had a long experience with Covid. The diagnosis of long Covid remains uncertain and contested, and treatments, ranging from recycled drugs to hyperbaric oxygen, are even more so.
I was infected with SARS-CoV2 during the Omicron wave of January 2022. It hit my child’s kindergarten class and took our household with it. We had none of the “underlying conditions” that might indicate increased risks of poor outcomes from Covid (and which have been used throughout the pandemic to allay fears that dangerous outcomes would only happen to “ others “). My acute infection didn’t scare me: I had a fever, body aches and chills for about four days. My initial Covid-related aches and pains were nothing compared to when I had dengue fever, known as “bone fracture fever,” while working in the remote mountains of Guatemala.
And then I never improved. It took me a few months to realize this. I developed crushing chest pain and a heart rate that would rival that of a hummingbird. I couldn’t walk around my block without stopping to catch my breath. I often felt dizzy and my arms and legs looked like lead sausages that had become too big for their casings.
Like many of my colleagues in global health, I love a good adventure and don’t mind flirting a little with danger. I will go anywhere and talk to anyone. I once dissuaded a Guatemalan street gang from attacking my small research team when they held a Kalashnikov to our heads during a robbery. It was scary, but I wasn’t afraid for my life. I knew this wasn’t the end of my story. But I thought that Covid could be long: at worst, I wrote letters to my children for fear of not surviving the night.
More than two years later, I am one of the luckiest among those living with long Covid. My symptoms are managed, although imperfectly. I have the academic training to keep up with the latest research findings and I have access to brilliant colleagues doing some of this work. I have the money, insurance, and health care providers who have allowed me to try several treatments.
Here’s a bit of what I’ve tried so far, all in the dark: A beta blocker controls my chest pain and elevated heart rate. A 3-month treatment with strong anticoagulants improved the numbness and pain in my limbs. Consistent use of electrolyte fluids like Gatorade and Pedialyte (ironically what I studied in graduate school) improves my dizziness and is essential to sustaining me to teach a class in a conference room or get through a day of meetings Zoom. My iliac vein has completely collapsed in my left leg and my cardiologist wants me to have a stent placed.
I would not be able to maintain the warehouse, factory, and farm jobs that many members of my family have held.
Even though my world has become small and I can no longer travel for work like I once did, most days I feel like I just got off a long-haul flight and am living in a permanent state time difference. I have one of those pill boxes full of medications and supplements that I hope will help at least a little. (I’m still having trouble reconciling my identity with this new reality.)
I was able to complete a 15-day course of the antiviral Paxlovid, and it was the best I had felt in two years. For many people, the side effects of this drug are terrible, but I never wanted its characteristic metallic flavor to go away. However, about two days after I finished taking Paxlovid, my symptoms returned. The recent findings of viral persistence did not surprise me, and new results from a clinical trial of 15-day treatment with Paxlovid in patients with long Covid showed no benefit.
I am now taking (at great expense) maraviroc, an antiviral used to treat HIV, which is helping to partially control my symptoms. I recently slipped into the whirring tomb of an MRI machine to try to find an explanation for the persistent post-Covid migraines in my brain, but it was a dead end. Nothing was found and I don’t know whether to be disappointed or relieved.
I admit that I am afraid. This is not a funny story that I will tell my colleagues over drinks later. There’s no drug lord to negotiate with this time. Instead, I spend a lot of time lying in the dark (I’m here now, even as I write this) negotiating with God and science so that I – and all of us suffering from long Covid and d other post-viral illnesses – better. Surprisingly, it’s the short periods when I feel better that are the most upsetting, because they highlight how bad I feel most of the time.
So I pretend. I need to pretend to be my old fearless self. I need to discuss interesting things with colleagues, teach and run my laboratory. I have to bring snacks to soccer and help my kids with their homework. It’s what makes me who I am, even if I’m playing a poor facsimile of my healthy self that requires hours (sometimes days) of recovery afterward.
I will continue to negotiate with the universe so that I can live the life I have worked to build for myself. I want that for everyone. My work in global health has shown me both the fragility of life but also the importance of fighting for everyone’s right to a full and healthy life.
I understand that no one cares much about Covid anymore. It’s been a long journey for all of us, even those who aren’t “long haulers.” I hope that anyone who hasn’t had a long Covid experience will never really understand what I’m talking about – what other people with chronic illnesses and disabilities have tried to teach us – that our able-bodied bodies don’t are only temporary. Long Covid and the SARS-CoV-2 infections that cause it are severe teachers.
I am inspired by the work of the Long Covid Patient-Led Research Collaborative and the research being conducted to uncover the causes and cures for Long Covid. But that is not enough. Given the widespread burden of disease and the economic and social losses it causes in the United States and around the world, the U.S. government must act quickly and decisively to stem the protracted Covid. The Long Covid Moonshot is a collective that advocates for $1 billion in annual funding for long Covid research, similar to Operation Warp Speed which enabled the first generation of Covid-19 vaccines. U.S. Senator Bernie Sanders (Democrat of Vermont) recently released a Long Covid Moonshot legislative proposal. Bipartisan support for long Covid is essential so that one day no one has to worry about Covid and its lasting effects.
Long Covid is like living with a gun to your head. Please pull the trigger on the Moonshot.
Rachel Hall-Clifford, Ph.D., is an assistant professor of global health, human health, and sociology at Emory University in Atlanta.