Long COVID and the Kingdom of Grief: How Sickness Shakes You From Yourself
The multisystem hijacking went on for months and changed me forever.
I was an ableist for most of my life, and I had a very arrogant view on health and little patience for people with chronic illnesses. I was asymptomatic with glandular fever; I’ve never had the flu; and no one close to me has ever been seriously ill. I once even got annoyed at my ex-boyfriend when he came down with a cold. “Perhaps it’s all that meat you eat,” I launched at him as he lay languid on the bed, pumping nasal spray into his Romanesque nose. There was so much living to be done! My precious time could not be spent on sickness.
And then I caught COVID in the first wave of infections back in March 2020. I got sick. And I didn’t get better.
The Trauma of My Long COVID Lasted Longer Than the Illness
My initial two-week illness was mild, and I remember answering an Instagram poll stating I’d give it a “4 out of 10” for pain. I made a decline at the one-month mark and was left frantically wondering how on earth I could get worse instead of better when I was so young (26) and fit. I spent the next eight months relapsing and recovering with different symptoms abating then intensifying. There were times I thought I was fully better but shortly after, I’d fall desperately ill again. Dizziness, chest pain, muscle spasms, brain pain, numbing, cognitive issues, loss of smell and taste and heart palpitations ravaged my body for months on end. People underestimate long COVID as a persistent cough and the occasional ongoing headache. They can’t understand the multisystem hijacking that does go on, invading and dominating each organ until you wake up one morning to find your whole body ransacked. I’d sign up to have a cold every day for the rest of my life if it meant never having to go through long COVID again, but unfortunately, no health angels exist that I can make such a trade-off with.
I considered myself mostly recovered in November 2020 because apart from ongoing smell, nerve damage and heart issues, I could resume my normal life again. However, even though I am physically much better, my trauma stalks me at every turn. My future feels tethered not to the “what if” but the “when” COVID reinfects me and I might have to go through the debilitating illness all over again, perhaps worse the second time around and, like so many other long COVID sufferers, without an eventual recovery. I am vaccinated but it’s not known how much protection that offers those of us who had a bad immune response the first time around.
I’ve always vowed to make my choices reflect my hopes and not my fears. I used this vow as an internal compass in my early 20s when I hitchhiked and couch surfed around the world. People would tell me I was foolish to ride in randoms’ cars and sleep on strangers’ sofas, but I was proud I could offset their ignorance with my confidence. I desperately want to continue living in this manner, but illness shakes you from yourself and erodes self-trust.
I feel indulgent for not bouncing back and living my life as fully as I had promised when I was in the depths of illness. “When I get my body back…” I would wish day in and day out. Now that I have, guilt intersects with fear and I’m stuck between not there and not here. As a cis, white, middle-class law graduate living with my parents, I should have the reserves of privilege to be stronger but I don’t (yet). Long COVID was an earthquake that collapsed the structure of my world and told me to seek shelter elsewhere.
I’ve spent the past two years collecting the rubble in an attempt to reinstate who I was pre-COVID. I see now there’s no option to resurrect my old self. Suleika Jaouad in her book Between Two Kingdoms describes this well: “Recovery isn’t a gentle self-care spree that restores you to a pre-illness state…recovery is not about salvaging the old at all. It’s about accepting that you must forsake a familiar self forever, in favor of one that is being newly born.” Acceptance isn’t as freeing as I thought it would feel; it is a clunky car that is difficult to drive.
As the world opens and learns to live with the virus, I find myself with an increasing inability to relate to my peers. I guess that’s what trauma does: locks you in the past and blurs out your future. We are nearing one million deaths in the U.S. from COVID and an estimated 20 million living with long COVID, yet the tragedy is now shrugged off. I understand pandemic fatigue and the desire to return to normal armed with the power of vaccinations, but the arrogance by which so many do that is bothersome. People use their own easy experience with COVID to justify why everyone who is now dead or disabled somehow deserved it or must have had “pre-existing health conditions.” This psychological technique of othering is always seized on during times of global unrest.
My friends urge me to talk, but I know vulnerability is only impressive when there’s a triumphant end. A struggling mountaineer who finally reaches the summit. A heartbroken divorcee who keeps on dating and then meets the true love of his life. A chef who conquers her depression. It’s hard to speak up in the thick of struggle. The mountaineer who turned around halfway into the expedition? The divorcee who never got over their ex? The chef who remained unhappy? There’s no prize for anyone in a liminal state. The American dream hates anyone in limbo.
I'm Just Starting to Recover From the Grief Caused by Long COVID
Chronic illness not only affects your sense of self but your relationships too. In those months, I lost a few people close to me. The most devastating fallout was with my boyfriend. We’d had issues before but ill health simply reduced my bandwidth to communicate and repair the relationship.
A year after my breakup, in an attempt to purge myself of my fear surrounding COVID and my continued heartbreak, I decided to go on an LSD trip. What I thought would be a reset of my grief quickly descended into an 11-hour mirage of my ex. Haunting and vivid apparitions of him caused tears to drench my face and surface my broken heart once again.
“If you loved someone and you break up, where does the love go?” Carrie, my favorite Sex and the City character, once asked. Samantha explained that it should go to the next person, but how can a love so personal be transferred? We’re told to get over them because “there are plenty more fish in the sea!” and “they’re an ex for a reason!” but I’ve always found these sayings platitudinal. With some people, their absence morphs into a presence, and all time does is teach us how to move forward shouldering that weight. Unfortunately, that weight is significantly heavier when you’re navigating the loss of yourself as well. I didn’t just love my ex for his wit, charisma and unmatched generosity, but the loss of him seemed to necessitate a loss of the carefree, healthy and independent girl who felt invincible during the years I dated him as well.
I thought there would be a light-bulb moment when I got over my chronic illness and heartbreak. It is almost two years to the day, but grief isn’t something you snap out of; it is continual, boring work. I try to switch my attention to every little moment that makes me grateful for the working and healthy body I currently have and the love I receive from friends and family, but I frequently fail. I’ve realized that courage is not really courage at all if you have an absence of fear. True bravery has nothing to do with how you live your life when you are healthy and happy but how you forge a new path when the one you envisioned for yourself is burned away.