Long COVID and ME/CFS: Validate others’ stories

Curtis Liu

What do you do when you want — no, need — to help somebody you love, but you cannot? In the midst of COVID-19, millions of people across the globe have come face-to-face with this heart-wrenching question. As we trudge forward amidst another surge of cases here in the Purple Valley, we too are confronted with this question in the form of accommodating for dis/ability.

One aspect of COVID that slips under the radar is its potential to cause long COVID, which does not seem to be as much of a concern for Williams students. Long COVID affects anywhere from 10 to 50 percent of all people who contract COVID, including young adults who experience mild COVID symptoms, according to research conducted by the American Medical Association, Penn State University, and Johns Hopkins University. That means that about one in ten people infected with COVID will have long-term symptoms, ranging from brain fog to shortness of breath to anxiety disorders. But statistics aside, the reason that I am interested in long COVID is its personal connection to my family.

On May 24, 2017, my sister Carissa was infected with a virus causing meningitis, inflammation of the brain tissues. Like many patients who currently have long COVID, her symptoms did not subside after recovery from the virus. Overnight, her entire life trajectory shifted. She was a hard-working teenager with a stellar academic record, a passion for figure skating, and a limitless potential for excellence. After falling ill, she began to notice new limits. Following exertion, she feels completely exhausted, has a constant pressure headache and sharp head pains, and complains of joint aches. For a figure skater striving to make it onto the international scene, this was a crushing blow, and she was forced to quit her craft.

Looking for a solution, we turned to medical professionals. But after doctor after doctor and medication after medication, it was no use. Doctors diagnosed her with a plethora of conditions, including psychiatric conditions, failing to believe her claims and insisting that her symptoms were an attention-seeking story. For Carissa, she began to feel socially distant from others and began to lose hope and meaning in life as doctors discounted her story, but as a family, we bonded over our collective experience of powerlessness and continued onwards. It was not until a full year after infection when we finally found an answer: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS “is a disabling and complex illness” according to the Centers for Disease Control and Prevention (CDC). An estimated 836,000 to 2.5 million Americans, 90 percent of whom have not been diagnosed, suffer from it. ME/CFS affects people’s ability to perform daily tasks, work at a job or study at school, and can make it energy-draining to engage with others in everyday life. With the rapid rise in long COVID prevalence, which can cause ME/CFS symptoms of chronic fatigue, headaches, insomnia, muscle aches, and brain fog, the estimated number of people with ME/CFS has increased by five to ten fold, costing an annual U.S. economic impact of $149-362 billion in medical expenses, lost income, disability benefits, and social services according to a new study.

While the effects are tragic, long COVID has opened a golden window of opportunity for insight into ME/CFS, with millions of Americans facing this dilemma of powerlessness as their loved ones suffer in silence. For months, my family and I experienced this confrontation with the unknown, uncertainty about how to support Carissa, and lack of a support network from the systems meant to provide that support. It was an uphill battle, but the biggest resolution came from finding a doctor who had knowledge about her condition and who also shared knowledge about the community of families that had similar struggles.

Struggling through these symptoms is isolating, but finding others with shared experiences or who understand your situation can be uplifting. For individuals and families whose stories haven’t been validated by somebody else, I hope this story provides understanding and community for you.

This community-building through finding others with similar experiences cannot be stressed enough as an important way to reinvigorate one’s sense of self and validate one’s story. Carissa struggled to find others who would believe her story, especially since she appeared completely normal externally, but once somebody did, the weight on our chests lightened significantly.

This concept of the “normal” needs to be dismantled to truly tackle these issues of accommodation and dis/ability. At Williams for example, the housing appeals process continues to increase the difficulty of receiving housing accommodations. In an effort to prevent the growing number of students trying to take advantage of the accommodation system for a housing advantage, the evaluation process has increased barriers to receive HART housing, requiring more and more evidence of need.

So much of the accommodation process focuses on proving one’s need for accommodation, but this framework constantly conveys a questioning of the dis/abled person’s story. This constant questioning by society and the system has negatively impacted Carissa’s sense of confidence and self-efficacy based solely on a preconceived notion of normalcy. As we rethink our idea of what is normal, remember that the difference between what society sees as normal and abnormal can be a matter of contracting one virus amidst a pandemic.

From my perspective, to combat ableism on this campus and address inequalities of accessibility, I turn to one lesson I have learned from my experiences: To help somebody who needs it, start by validating their story.

Curtis Liu ’23 is a chemistry and psychology major from Yorba Linda, Calif.