I'm Immunosuppressed. 'Pandemic Fatigue' Is a Luxury I Can't Afford.

I don’t know how to be in the world right now. I don’t know how to be a good friend, partner, or parent. The weight of life is cracking and flattening me into an unrecognizable shape. I am entering my second decade of chronic illness and completing year two of a pandemic. I used to force myself to push through moments of feeling too tired, too overwhelmed, too underprepared — focusing on survival while maintaining the status quo. The status quo is now a constantly moving limbo bar. Right now, the bar hovers on the ground. Back arched, shuffling forward, the extension of my bend has met its limit.

Two full years into a pandemic, the air is both muted and amplified with fear and uncertainty. Among adults in the United States, rates of anxiety and depression were nearly four times higher between April 2020 and August 2021, according to the Centers for Disease Control and Prevention. Anxiety, depression, and I are perpetual dance partners, opposing poles held together by a magnetized bond. Therapy, pills, writing, self-care: all attempts to pry us apart. Our proximity and constant motion keep us electrically charged. I want to put the anxiety down and tell my brain I’m out of danger. I am not under threat. I want to tell my depression, hey, I’m OK. I’m not hopeless.

A brain and a body have different ideas about how survival mode works. Body survival mode slows down everything to keep all the essential organs working. Conservation of energy requires the cessation of anything extraneous. All energy is spoken for. There can be no asks. The body doesn’t care about the brain’s loneliness or fear. The body only cares about staying alive. Brain survival requires more. It requires connection to other brains. When the needs of the brain are not being met, it will shut down body functions in order to preserve itself.

My body stopped making blood cells at some point. I don’t know how long I’d been sick, but it became unignorable in September of 2017. The cause of my disease was idiopathic — as are most cases. Severe aplastic anemia is a rare bone marrow disease that affects 600-900 people in the United States per year. It impacts all three bloodlines: red cells, white cells, and platelets. Your marrow, normally thick and lush with beautiful new blood cells becomes empty and brittle — aplastic. Once I heard it described as walking on hollow bones. The cure for my body was a bone marrow transplant on Halloween of 2017. The cure caused a system reset. A complete shutdown and reboot. I began to reevaluate the status quo.

In February of 2020, before being vaccine eligible, I was told by my medical team that I would likely not survive a SARS-CoV-2 infection. Finally fully vaccinated in September 2021, I am still at high risk for severe illness. The protection offered to immunosuppressed people by the vaccine is unclear. When you have a chronic illness, you aren’t in charge of your body. You become dependent on -ologists of whatever specialty to tell you what to do with your body for the best possible outcome. There’s so little in your control. Maybe it’s the exact same amount of control you had before illness, but its omnipresence sucks the oxygen out of the idea of free will. Everything feels predetermined when system dysfunction prevails.

My state lifted its mask mandate recently. While others are celebrating, I am preparing yet again to live smaller. Everyone is done with the pandemic. Everyone wants to live freely. To go to brunch, to socialize, to travel, to exist without worrying about KN95s and who is or isn’t vaxxed. I lost a friendship last spring because I don’t have the luxury of being done. She wanted to move forward and didn’t want to worry about accommodating me. “We have to move forward. We’ve done all the right things.” Her words burned. I couldn’t argue with her truth. I had compassion for her desperation to move forward, but my hurt was all I could express. We’d been friends for almost a decade. She’d been with me as I recovered from my transplant.

After the phone conversation that severed us, I thought of my dad. How he’d had support in the first decade of his disease. He lived with a chronic illness for almost 25 years. By his death, all he had was his family. I told my mom about the conversation with my friend. She looked at me with an understanding smile, “People leave when it gets hard.”

Four years ago, I was dying. As someone who is still considered high-risk, despite being vaccinated, severe illness isn’t off the table, especially if I contract COVID-19. I have comorbidities and chronic graft versus host disease due to my transplant. A COVID-19 infection isn’t a simple 10-day illness. Graft versus host disease (GvHD) is the unfortunate side effect of my allogeneic bone marrow transplant. The graft (donor cells) attacks my healthy cells (host) causing an overactive immune response. It is systemic. I’ve had GvHD in my liver, kidneys, eyes, gut, skin, and mouth so far. A mouth full of blisters isn’t something I’m anxious to repeat. The prescription to control a GvHD flare is high-dose prednisone and other immunosuppression medications. The last time I had a flare, I was on prednisone for a year and a half. Prednisone is purgatory and punishment I never want to endure again. Anytime I get sick, I get a GvHD flare. The severity is an unknown that haunts me. If I get sick with COVID-19, it isn’t as easy as getting it and getting over it. The fallout could be years of hell.

I am tired of fighting for my life. I want medical freedom too. I am also tired of being isolated. When you have a chronic illness, you can’t show up in the world like you used to. You can’t show up in relationships like you used to. You have to listen to your body. You have to rest. You have to say no. You have to put yourself first. When you’ve built relationships on putting everyone else first, they don’t work when you can’t do that anymore. People move on. They should. I expected them to. It doesn’t mean the sting of loneliness feels any less potent.

We are in a transition with this pandemic. It will move to endemic, experts say, but until then, we’re still in the pandemic. “It’s dangerous to assume that Omicron will be the last variant and that we are in the end game,” Tedros Adhanom Ghebreyesus, head of the World Health Organization stated in a WHO board meeting in January. In this moment of division and politicization of a public health emergency, the world wants to move forward but the disease isn’t interested in our timeline or our pandemic fatigue. A virus doesn’t consider feelings. While healthy people may feel free to move about without significant consequence, what happens to the rest of us?

I preemptively judged that my dad gave up 10 years into his disease. I perceived him to lose his fight to get better. He did not want to be poked or examined anymore. He didn’t want to try new therapies or unsolicited, imaginative suggestions to heal. At 20, I asked a psychic, “Will my dad get better?” “Only when he decides to,” was her answer. Maybe there was more my dad could have done. When your container has failed you for so long, defeat lingers. You lose so much about life that brings you joy. People came around for my dad in the early years. They trickled away. Eventually, he lived a house-sized existence. Medical appointments, television, weekly calls with his brother, and visits from his kids and grandchildren marked the days.

At 44, I am not ready for a house-sized existence. The parallels sit unsettled in my gut. My life is mostly me, lapping up what attention my teenager will give me, driving around with my husband for date night, Netflix, Zoom, and medical appointments. I don’t know if I am choosing this existence, or if it is being forced upon me. My circumstances aren’t comparable to someone who’s healthy with no underlying conditions. I do see friends occasionally, but it’s usually after test protocols and boundary setting to give myself the best odds of not contracting COVID-19. I’m a pain in the ass to hang out with. I’ve already fought for my life once. I don’t want to do it again. I no longer judge my dad so harshly for how he lived. He was tired. He understood what really brought him joy. That was enough.

I was not prepared for the loneliness of disease superimposed on the loneliness of a pandemic. I lack complete acceptance. I’m not ready to accept that my life may remain this way for an unknown amount of time. Discontent is a signal to shift. Sometimes things shift in your favor. Often they don’t. This time will end. Where will I be when it does?