COVID is the lighter fluid

New Thinking on Long Covid and anxiety

           

I got Covid on an international flight. It was early January of this year and I was masked. I had never tested positive for COVID-19 before and wondered if I might have already had it.  It would be impossible not to have ever had it, I thought, after constant exposures at work. I am pinged weekly that I have a positive COVID exposure in one of my classrooms. I must have been asymptomatic; I convinced myself.

My acute illness experience was pretty standard. I spent nights on end coughing but I never feared that I couldn’t breathe. I felt complete exhaustion and laid in bed for days. My symptoms were summed up by intense malaise, fever, coughing, and brain fog.

I tested positive for two weeks but the coughing and fever stymied in a week. The brain fog and chronic fatigue lingered for months. I kept texting my friends to see how long they felt this tired. Most said a couple weeks, others said a few months. Oh no, I thought. This might settle in for a long time.

A couple weeks after I was back at work, a new symptom crept up: my old friend anxiety became as intense as my fatigue. I attributed the anxiety to everything I was juggling: teaching an overload, volunteering at my kids’ school, and childcare (e.g., taxiing my elementary school children around). My mood continued to deteriorate and I realized that I was having more days when I felt anxious and sad than when I didn’t. These roller coaster moods reminded me of the post-partum depression I had after giving birth to my youngest daughter.

By the end of February, I met with my family nurse practitioner. Although my general anxiety ebbs and flows in accordance with the (im)balance of parenting-work-family-life, I realized post-COVID anxiety was something different. Mine was deeply entwined with depression and a constant feeling of lack of control. Things started to balance out once I started taking anti-anxiety medication and shifted my time around to make space for more self-care.

It was not long after I started interviewing people with Long Covid when I realized how common an escalation of anxiety and depression is for people who’ve had COVID. Research suggests that having an intensification of anxiety or depression after COVID-19 is most likely linked to having had a propensity for psychological distress before infection. This tracked with me, and I found this underlying feeling to be so common among the people I interviewed who had some type of anxiety, depression, panic, or trauma before their acute infection.

Dr. Monica Verduzco-Gutierrez, a professor at UT Health San Antonio explained, “COVID is like lighter fluid, an igniter, and there is a simmering underlying flame, and there is lighter fluid and it brings whatever is existing out.”

For many people, Long Covid exacerbates whatever underlying conditions that are pre-existing. It might be that there is a propensity for anxiety, and the virus spins it out of control. Or that there is an underlying heart condition that has yet reared its fiery head: but the virus wakens it up.  This may be why conditions like auto-immune diseases develop in some people with Long Covid and not others.

Many scientists argue that the dysregulation of the autonomic nervous system may be a central reason why the body expresses increased feelings of anxiety. A common Long Covid symptom if feeling like you’re in an unending state of fight or flight. For example, one woman told me, “Our sympathetic nervous system is stuck in the fight or flight mode, since I stay so jumpy and nervous all the time.” In essence, when a stressor is over, and the stress-response turns off, your parasympathetic nervous system is supposed to slow down your heart via the vagus nerve to calm down your body. This check-and-balance falls away for many people living with Long Covid.

Neuroscientist Dr. Mike VanElzakker argues that perhaps the immune response is tricked by the virus linking to the vagus nerve, making it think it’s under attack when in fact the body is relatively healthy. This would mean that the calming sensation put into action by the vagus nerve would be delayed—making sense of the panic, heart palpitations, and constant anxiety many patients have described to me. Originally focused on understanding the neurobiology of trauma, Dr. VanElzakker was drawn to study chronic fatigue syndrome when his friend got so sick she had to leave law school. He argues that the trickery to the vagus nerve makes immune cells release proinflammatory cytokines that send a signal to the brain that the body is sick. This is not unlike the well-documented cytokine response storm of COVID-19 that comes from sympathetic activation inducing pro-inflammatory cytokine release.

With microbiologist Dr. Amy Proal, Dr. VanElzakker has argued that the brainstem may play a central role in Long Covid symptoms, when the virus tricks the vagus nerve to mediate sickness behavior, autonomic control, and arousal. Such interruptions are linked to the common flagship symptoms of Long Covid: dysautonomia, fatigue, sleep problems, nausea, pain, and sickness (which are not unlike chronic fatigue). Dr. VanElzakker explained to me: “The problem with medicine is that it really likes categories: symptoms, diagnosis, treatment. But these are syndromes, which are not a discrete thing that’s really hard for people. It’s like unpeeling an onion.” In many ways, this theory is hopeful because there is a potential point of intervention by way of antivirals that could help abate myriad symptoms of Long Covid patients.

Most people I spoke to were taking an anti-anxiety or anti-depressant medication not only to control this constant hormonal surge but also to help manage the feelings of isolation that consume so many people when they have extraordinary malaise. I spoke to a professor in Virginia who could barely walk down the stairs without becoming exhausted. Although she described having substantial family support around her, her inability to move around and care for her children caused distress and she began taking an anti-depressant. Her mood improved and slowly her fatigue was improving too.

Long Covid patients have become reliant on and learners from the large body of patient activists working on chronic fatigue syndrome (or ME/CFS).  It may be that if Long Covid patients weren’t linked to the most famous virus of our time, most people would be categorized as ME/CFS. What is striking between both patient communities is how closely they are reading the medical literature and advocating for themselves. The same professor I mentioned above told me that patient activism was immense and much more helpful than the Long Covid Clinic where she sought care and had been largely unhelpful. In this way, taking seriously Long Covid patients narratives that embody scientific detail around what is going on and how interconnected human bodies are with past trauma, current emotion, and biology is critical.

“I’ve always been a very emotional person,” a Long Hauler named Bethany told me early in the morning, when the sun was coming up on her side of the world. “Very very emotional. It’s kind of how I’m wired.” She shook her head, feeling tears already swell in her eyes. I looked at her through my screen and realized how difficult it was to talk about this, to put together her feelings and experiences into words.

“Part of the reason I get so emotional is because of the postural orthostatic Tachycardia syndrome. It's been brought about by long covid,” she explained. “Because part of the dysautonomia is that my autonomic system can no longer regulate the fluid volume of my body.  So when I’m up right, you know your system has to get oxygen to your brain and, or in lungs somehow. So it elicits a sympathetic response which is the fight or flight. And that makes the heart race. It makes the feet cold. It forces blood back upstairs. But sympathetic response carries with it the emotions of fear and rage. And it lives in my throat. I am chewing on screams every minute of every day. So whenever emotion hits me, it's right here, just waiting to come out because I'm just clamped on this panic response all day that my body cannot help but do in order to keep me functional and alive.

“And this is, I think, while Long Covid is so devastating,” she went on to explain. “Because there is a physiological response that provokes depression, anxiety, stress, panic and honestly rage. It destroys joy. It's very difficult to come back to the ventral Vagas Nerve state, which is where we dwell most of the time. It's just that neutral like talking around the water cooler moment. But every single moment I'm upright. My panic is engaged. And this is also why it looks so much like a psychological disease when, in fact, it's the other way around. It's a psychological effect and physiological response. So this is how I live every minute of every day.”

Like so many conditions, Long Covid is complicated and systemic. Recognizing where and why people with a propensity for mental illness get much worse due to Long Covid is critical as we think about supporting the 5-10% of people carrying symptoms for this illness well beyond the first couple weeks after infection.