Lessons from long covid : my story
How chronic illness is a signpost to a more humane society
I awoke peacefully and peered at the time - three-something in the morning. My oil burner was still going, the orange light from the candle welcoming me into the night. I didn’t feel scared when I realised my breathing was laboured, or that I was sweating with a high fever. In the quiet comfort of candle light, I felt an otherworldly calm.
It’s been four years since I got long-covid, and writing about it feels odd. What should I share ? Different parts of me had polar opposite experiences of my illness, often at the same time. One day I was terrified my lungs might let up, the next I was lying in bed deeply grateful for rest. Each was real, but it was never a cohesive story. All I know for sure is that it ripped me from my old path and threw me onto a new one. One that demanded a completely new way of life.
On March 13th 2020, the UK had yet to declare a lockdown and the virus was spreading like wildfire. I was at my office, finishing off a report and winding down for the weekend. My boss jokingly asked the room “who’s going to get covid first ?” and to my amusement, I lifted my arm. What are you doing babe? I grinned to myself. In response to my internal question arose what I can only describe as a deep, calm certainty that I’d contract the virus, coupled with a sparkly feeling of joy. This will be good, it said.
What ?!
It would catalyse something I could not bring about on my own. I was stuck, dealing with high levels of stress both personally and professionally, with no let up on the horizon. While I thrived on the positive adrenaline of journalism, a lot of my life stress at the time was hurtling me toward a deep burnout. “Something has to stop me,” I thought at the time, “I just can’t keep this up much longer.”
Then covid hit on March 16th.
I struggled to inhale enough air as I pressed the phone to my ear and waited for the ambulance service to answer. “Do you think you’re dying ?” What ?! I couldn’t breathe properly even when calm, was I dying ? No, surely not. How the fuck should I know ? They were clearly overrun. I can fix this myself, I thought. “I don’t think so, but I don’t know…”, “If it gets worse just call back.” I hung up and started hyperventilating, sliding fast into a full blown panic attack. If it wasn’t for the years I’d spent learning breathing practices, I might have ended up at hospital from the stress on my lungs. I forced my thoughts into submission, my painful lungs into a steadier breathing pattern. But it was no use, my anxiety was through the roof.
The heaviness, tightness and pain I felt in my lungs is something I will always remember. For months, it became a part of daily life. The simplest form of exertion would set it off - sitting up, standing, walking, even talking made me feel breathless, exhausted and in pain. I remember the terror of feeling the virus attacking one of my vital organs, the horrible vulnerability of knowing no doctor could save me if my lungs gave up. When I started reading of people my age dying (I was in my late twenties), my fragile internal balance got destroyed. In those moments I was managing life-and-death anxiety on my own, away from any family or support.
1. You are not meant to struggle alone
I was desperate for reassurance from an empathetic other, but my housemate at the time was too wrapped up in his own fear of catching the virus to check if I was okay. I had to crawl to his bedroom and, from a safe distance of course, ask him to cook me some food. I felt demeaned and invisible.
Thankfully he came through, but the initial lack of care was a shock. Then again, we were not being told to care for each other, we were being told to keep a distance. Public messaging paved the way for narcissistic bubbles of fear and self-preservation to take hold. Society was suddenly relying on each individual household to be one’s whole community. If you got ill and lived alone … well, you were on your own.
It felt profoundly dystopian. The pandemic was tearing through the illusion that we lived in a society at all. When push came to shove, we were individual units walled off from each other, looking out for ourselves. In relationship to others only through the economic impulses that brought us into shared spaces - work, shops, public transport. When those impulses were disrupted, where did that leave us ?
Inadequately resourced to deal with sickness and distress, that’s for sure. Struggling with the illness on my own for the first few months was traumatising. Until about a year ago, I still had severe panic attacks about struggling to breathe, because no one was there to help me co-regulate my distress at the time. My experience is but a tiny microcosm in an ocean of dysfunction caused by the imbalance of our economically driven separation.
2. You are a human being, not a human doing
Once the first lockdown had lifted, and someone on the other end of NHS 111 told me I was no longer infectious, I moved back in with my parents. All daily stresses were taken off my shoulders. Slowly, with physical and emotional support (and a lot of cuddles), my family helped me learn to walk again and my lungs eventually recovered.
But four years later, I still haven’t got back to the levels of productivity I used to have. My capacity for stimulation, inflammation and stress is still far too low to assume my place as a meaningful part of the workforce. Big emotions can take my body out for a week. My hormones can still cause over-inflammation to the point of illness; too much noise, too much screen time, too much talking, too much travel can all trigger post-exertional malaise that puts me to bed for hours or days. My life requires a lot of flexibility, constant surrender, and a complete overhaul of my relationship to ‘doing’. I struggle daily with the questions :
“If I cannot do, how do I belong ?”
“If I cannot always take part, am I valued ?”
I know deep in my bones that I am of innate value simply by virtue of existing. And yet, society values my existence only while I am productive. I must ‘earn my living’ and my place in society. If my body cannot be productive, society considers me so worthless that I must make peace with poverty. My limitations become financial, as well as physical.
This logic attempts to strip me and others like me of dignity, of worth and of a future. But it communicates to everyone a threatening message : renege on your place in the system of incessant production and you no longer belong here.
This logic is so abhorrent to me that I must reimagine society from the ground up. I have survived a serious illness that was out of my control, and for that my financial security is put at risk ? We strip the most vulnerable of their power, dignity and abundance because they cannot hand their lives over to the economy; I now see a far deeper sickness in that than in myself.
Is it such an outrageous thought that society should reimagine its core purpose away from the production of capital, and reorient towards the celebration of life ? Studies have shown people flourishing with Universal Basic Income, a policy which gives all people a baseline income no matter their situation - centering life and dignity instead of GDP (but which has the potential to enhance the latter of course. Give people more abundance and you maintain consumption, a healthy workforce, and increase risk taking and entrepreneurship. No, people don’t become ‘lazy, feckless benefit scroungers’ - instead they can begin to focus on self-actualisation over mere survival. Imagine what kind of world such people could create… )
3. Sickness is a message to society
During the first eight weeks of my illness, in moments of high anxiety while struggling to breathe, I could not psychologically escape the possibility of death. As I grappled for some sense of solid ground in those moments, I ran through some serious self-reflection. It turns out I was less afraid of dying, and more afraid of never experiencing the things I yearned for in this life.
I loved my job. It gave me purpose, confidence, and the joy of doing excellent work with a team of highly competent people. For those of us who love to master a skill or vocation, there is nothing more motivating than that. And yet, I was in a state of imbalance.
I yearned for rest. Deep, enduring, nourishing rest. The ability to return to a state of relaxation and play, and do absolutely nothing for as long as I needed.
I yearned for nature. Whenever I could I went to my local park, but it wasn’t enough - I needed more than to sit on badly kept grass. My body was clamouring to luxuriate in green spaces that were bursting with health and vitality, where all number of insects clamber over my feet, where the only sounds are the trees rustling in the breeze and the birds chirping among their branches.
I yearned for connection. My heart was broken from years struggling with post-traumatic stress without the deep support I needed from friends or family. I also mourned a deep loss of connection to my body, which I no longer truly occupied.
I yearned for expression. Through movement, painting, writing, singing, dancing. I yearned to feel moved by the current of my own aliveness, to experience myself as a vessel for the flow of my own life force.
The above weren’t merely things I ‘wished’ I had, they were vital resources for diminishing the stress that was compromising my immune system. In fact, I felt so depleted of resource I thought I was on the verge of suffering a serious burn out. When covid hit me I was primed for chronic illness, and it need not have been that way.
Had the mental health system been able to offer me adequate support for my diagnosis of PTSD, I’d not have been so deeply depleted when I caught the virus. Had I not been tied to working nine to five, five days a week, fifty weeks a year, I’d have been able to take the time out I needed to cure my impending nervous system burnout. Had I been able to live away from the costs of the city, the hours of commuting, the pollution and concrete, my body would have been less stressed and assaulted by overstimulation. Grounded in the earth, surrounded by the peace of nature, my heart and body could have begun to heal.
My sickness was a message to me and the way I lived my life, but it also presented a damning report of my environment. Our illnesses do not get created in a vacuum, but by the lack of resource we are born into and attempt to live in. Instead of treating sickness as the burden of the unfortunate, we need to deep dive into what we’re collectively doing wrong.
"We strip the most vulnerable of their power, dignity and abundance because they cannot hand their lives over to the economy; I now see a far deeper sickness in that than in myself."
Wow. So well said, and you write beautifully. I hope that you are now getting all the rest and nature that you crave.
The clarity of thought and expression of something so profoundly painful and emotional is as inspiring as it is thought provoking. I can’t help but wonder at the beautifully balanced, egoless writing subtly mirroring where this tale has taken you spiritually. What a gift you are to the world.