essay
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As a linguist, I want to find the words to measure chronic illness
So what words can I, a linguist and a patient with sensations perceivable only to me, use to fully capture these mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS) sensations to my providers? And, more generally, how can we measure our unsettling internal realities if we can’t even name them?
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Between two crises: Living with Post-COVID Vaccine Syndrome in a Long COVID world
What I thought was a minor reaction became Post-COVID Vaccine Syndrome (PCVS), a condition I now live with alongside thousands of others. PCVS shares symptoms with Long COVID, including nerve pain, dysautonomia, tinnitus, fatigue, and heart issues — but faces unique stigma, leaving us dismissed and understudied.
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Universities get an F on Long COVID. Here’s how they can support their students and reduce COVID-19 cases.
My infection months before came and went mildly, but it soon became obvious that my sluggishness and pain were not caused by caffeine, thesis stress, or hangovers. It was Long COVID.
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Even stones break in this heat: Experiencing Long COVID in Indonesia
Now it’s been four years. And this thing — this invisible thing — is still here. Every morning is a gamble. Will I wake up with energy? Or will my legs feel like stone? Will I be able to focus? Or will my thoughts float around like lint in the air, impossible to catch?
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Traveling with Long COVID is a challenge. Here’s how I made my journey safer.
Last fall, I went on a trip to Ireland, traveling thousands of miles from my home in Illinois. I encountered many obstacles on my journey, but in the end was able to balance my energy and disability with some enjoyable ventures. I’m happy to report that I achieved my goal.
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I want a Long COVID language revolution — not language imposed onto my sick, disabled body
I wondered: Might there be a way to alter ableist language about disabled Long COVID lives and bodies? Or, at the very least, my own disabled body? So I talked with disabled experts who’ve written about disability and language and surveyed The Sick Times readers about their feelings around the language often used for our…
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Avoiding caregiver burnout: Wisdom for the ME and Long COVID community
Many caregivers spend so much time caring for their loved ones that they neglect themselves and burn out. Having experienced burnout myself, I encourage all caregivers to take intentional actions to strengthen their resilience. Over the years, I’ve learned invaluable mindset, emotional, physical, and spiritual strategies to strengthen my resilience so that when challenges arise,…
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How volunteering to become a lab rat paid off
When I signed up for a clinical trial, I expected it to be thought provoking at best and onerous at worst. I didn’t expect it to change my life.
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COVID-19 triggered a life-threatening pulmonary embolism that led to long-term lung damage. It took two ER trips before doctors believed me.
It started with chest pain. I woke up in the middle of the night and realized I couldn’t take a deep breath. I immediately pulled up the internet to search my symptoms. It turns out, anything with the search terms “chest pain” and “trouble breathing” leads to the same advice: go straight to the emergency room…
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Missives from the dismissed: Still COVIDing without community
Combining my experience building COVID-safe communities online and interviews with over a dozen COVID-cautious people who are “still COVIDing” despite a lack of community, family, and/or peer support, I learned that many are stuck in situations that make living a normal life difficult or impossible because of widespread COVID-19 denial. This essay is a collection…
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