Tag: chronic illness

Jo, a trans nonbinary Taiwanese American, in a hospital bed and gown with an IV in their right arm

Long COVID, ME/CFS, and Patient-Led Care: Jo’s Experience of Post-Viral Chronic Illness

July 30, 2022

[content warning: discussion of chronic illness and brief discussion of suicidality]

I recently got a lounge chair for my afternoon crashes. It’s firm with coarse gray fabric, and it is long enough that I can lie with my legs propped up on pillows. For one to four hours many days, I am here, letting gravity pull the blood to my brain, watching my world constrict to the leaden confines of my body.

My breaths feel slow and heavy as if oxygen thickens in my lungs. I can’t stand up for more than a few seconds at a time. Words escape me, and even if I can grasp them long enough to form a sentence, I often don’t have the strength to propel them into speech. My every sense feels so overloaded that anything – any light or noise – feels excruciating. Every sound is a cleaver and I am raw nerve.

This is called post-exertional malaise (PEM)– a drastic and disproportionate worsening of symptoms after physical or mental exertion. The experiences vary from person to person, but for me it comes with physical immobilization and cognitive dysfunction along with an assortment of lightheadedness, headaches, nausea, stomach cramps, and inflammation and pain. 

I’ve been experiencing it for at least four years, but for the first two, doctors told me there was no such thing– that perhaps I was just stressed or getting older (I’m 34 now, around 29 or 30 when I began asking). In most countries, PEM is now a required diagnostic criterion for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Not until recently, however, with PEM appearing in a majority of long COVID patients, has PEM become part of public vocabulary.

While its cause is unknown, the majority of ME/CFS cases are traced to some viral trigger– very much like long COVID. Research has shown ME/CFS to cause damage or dysfunction in the neurological, endocrine, and immune systems. Among other things, studies find neuroinflammation, mitochondrial abnormalities, immune irregularities, and chronic infections. Counterintuitively, exercise or any sort of overexertion can make ME/CFS patients worse.

Though the CDC has known of ME/CFS for decades, the condition (or cluster of related conditions) has been grossly underfunded and under-researched. 

I am telling you this because even with the groundbreaking new investment in long COVID and post-viral conditions, we have so far to go to provide care for the tens of millions of people in the US alone who are or will be chronically ill.

Along with PEM, ME/CFS also garnered more public attention in recent years, as doctors speculate about the significant overlap between long COVID and ME/CFS– with some even asking whether they’re “one and the same.” While it is too early to know exactly how closely related long COVID and ME/CFS are, patients of either or both conditions can benefit from knowledge-sharing and collective power.

I hate talking about this. I hate that every day I have to play the most mundane version of “Would You Rather?” Would I rather deal with my health insurance company or get groceries? Would I rather cook or do laundry? Would I rather get 20 minutes of activity and a mild crash or spend another day feeling pent up and angry about everything I cannot do? 

To be upfront: I’ve never been very athletic. I was an asthmatic, indoorsy kid picked last for just about every team sport. For most of my adulthood, however, getting up and moving was the way I broke from my very desk-bound, cerebral job. Whatever I lacked in athleticism, I compensated for in activity. I enjoyed learning to move in new ways and being present in this body. It is perhaps this last part that feels especially cruel. As someone who came to terms with my transness later in life, it took me until age thirty to have any sort of a relationship with my body– to want to be present in it, and by this time, I was already ill. 

I spent most of my twenties in CrossFit and weightlifting gyms– first as a member and then as a coach (which is its own terrible story for another time). I’ve done full-day fitness competitions, and I’ve sparred for 45 continuous minutes with a jiujitsu teammate just because I could. Now, overexertion – whether physical, emotional, or mental – risks leaving me bed-bound. 

The fact that I can (now) tolerate daily walks and mild activity puts me on the much gentler side of ME/CFS, but my days of running or sparring or olympic weightlifting feel a lifetime away. In 2019, over a few months, I went from doing some sort of sporting every day to daily crashes in response to any movement.

I hate talking about this, but I am telling you because a recent report from the National Center for Health Statistics finds that 12% of trans adults are currently experiencing long COVID, compared with 5% of cis men and 7% of cis women. Of course, this is not surprising. 

To quote JD Davids, co-founder of the Network for Long COVID Justice: “Of course [trans people] have higher rates of long COVID. We have lower rates of being treated as humans.”

We are already familiar with health care discrimination, with having our testimonies about our own experiences and needs dismissed. We are also more vulnerable to educational, housing, and employment discrimination– all of which makes it more difficult to receive competent care.

When I first went to my doctors complaining of PEM and they dismissed it, I went back to the gym and I went back to boxing and jiujitsu, and I pushed myself in that way that I miss so badly – to that uninhibited sprint where your entire body feels like a roar. I did it again and again and landed myself in the emergency room again and again. If I overdo it by a little, PEM hits a couple hours later or a day at most. If I overdo it by a lot, the worst doesn’t strike for another 48-72 hours. 

Because my doctors had never been trained to recognize PEM, it took me a third trip to the ER to speculate that there was a connection between a hard round in jiujitsu and the subsequent fever, plummeting blood pressure, pain, lethargy, and the collapse of my nervous, immune, and digestive systems. 

I am telling you this because– even as someone with decent health insurance, the privilege and resources, the peer-reviewed research studies, and expertise in rhetorics of medicine and illness– it took me years to find any physician who would believe my symptoms. In those especially helpless years, watching my life scroll by from the flat of my back, I found other patient groups as a lifeline. Resources compiled by organizations such as #MEAction provided an understanding of pacing while physicians were still telling me to keep exercising as before.

Jennifer Brea’s award-winning documentary, Unrest, which brought unprecedented attention to ME/CFS. Copyright Shella Films.

It took me another year to pull back enough so that I did not spend much of the day trying to will myself up back to my feet.

The limited studies (and many experiential anecdotes) place ME/CFS patients, like trans people, at significantly higher risk for suicide. As with trans people, this risk is not an inherent part of who we are– it is built into structures designed to ignore or even magnify our pain. Studies on patients with chronic illness attribute elevated suicidality to lack of resources and understanding, loss of employment and community, and the general hopelessness that descends with so much loss and forced isolation. 

I am telling you this because even with the groundbreaking new investment in long COVID and post-viral conditions, we have so far to go to provide care for the tens of millions of people in the US alone who are or will be chronically ill. I am telling you this because disabled folks and trans folks– and particularly disabled trans folks– have a long history of caring for one another where structures fail. 

Before I finally found physicians who recognized and at least attempt to treat ME/CFS, I survived by the wealth of resources assembled by ME/CFS patients and activists and other chronically ill writers and organizers. Even now, the vast majority of strategies and tools I have came from their toolkits rather than medical providers.

If you’re just getting started in your chronic illness journey, if you get nothing else from this essay, I hope you’ll hear this: you are not alone. This is not your fault, and there are people out here fighting for the care you need and deserve.

There is an expansive number of organizations and communities for ME/CFS, long COVID, and chronic illness more broadly. If this ends up being a topic that folks have interest in seeing covered, I’ll continue writing about and provide more resources in the future. Below are simply the ones that have been most impactful for me.

Groups/Communities:

ME Action Network – one of the most impressive examples of patient-led research and activism that I’ve seen. This international organization has been critical to building community around, driving research about, and promoting awareness of ME/CFS and post-viral conditions.

Body Politic – a queer feminist COVID-19 support group that provides peer support, patient-led research, and public education 

Both the above, among other excellent organizations, are partners of The Network for Long Covid Justice.

Evidence-Based, Accessible Coverage:

David Tuller, a Senior Fellow in Public Health and Journalism at UC Berkeley has provided extensive coverage of ME/CFS and its outrageous bureaucratic and scientific neglect.

Individual Stories/Memoirs, Journalism, and Other Nonfiction

that discuss ME/CFS or related conditions such as chronic Lyme, mold toxicity, and fibromyalgia:

Racial Disparities in ME/CFS and Long COVID:

Ashanti Daniel, Wilhelmina Jenkins, and Chimére L. Smith have been central to spotlighting the neglect of POC with ME/CFS and long COVID.

Academics/Researchers:

  • Emily Lim Rogers – takes an archival and ethnographic approach to the politics of ME/CFS, looking at patient activism and the limits of Western medicine with both critical insight and compassion
  • Vyshali Manivannan – writer, creative/critical scholar, and activist who deftly combines autoethnography with rhetorics of health and medicine 

Managing Editor/Writer

V. Jo Hsu