Labeling people with Long COVID as “patients” is stigmatizing and personally and politically harmful. It strips personal agency. And frankly, it’s bad PR.
People with Long COVID have accomplished incredible things in the face of medical doubt, government neglect, and societal silence. We’ve fought for recognition, research, and clinical trials, despite disabling symptoms, stigma, and invalidation.
Yet within this extraordinary work, there is a contradiction. Many in the Long COVID ecosystem refer to people with Long COVID as “patients.”
As I witnessed in early Long COVID advocacy spaces, organizers ignored the precedent of placing a person’s humanity before their health status and chose to identify as “patients.” As the movement has increasingly referenced HIV/AIDS history and disability rights advocacy, I thought the tide would turn.
Instead, “patient” became the default, turning millions of people with Long COVID into a perpetual medicalized identity.
I hadn’t thought about the AIDS crisis so viscerally or talked about certain aspects of it in 30 years — until comparisons were made with COVID-19. I shared in Long COVID advocacy spaces my experiences with AIDS Coalition to Unleash Power (ACT UP), explaining their leadership structure and why the term “patient” was deliberately not used. But the dam had already burst. I was using a Band-Aid to stop a flood.
People with AIDS understood the impact of words when they crafted their bedrock manifesto in 1983, the Denver Principles: “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’”
Those same words — “victims,” “patients” — now permeate stories on people with Long COVID in the press and on TV. It doesn’t build connection — it elicits pity.
We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’
The Denver Principles
The relentless use of “patient” has been normalized to the point it landed on the Centers for Disease Control and Prevention (CDC)’s website as part of an “anti-stigma initiative.”
I am calling on the Long COVID landscape — organizations, advocates, researchers, medical providers, investors, and the CDC — to abandon the disempowering identifier “patient” and use “people with Long COVID” instead.
The National Institutes of Health’s style guide for destigmatizing language states, “Person-first language is a way to emphasize the person and view the disorder, disease, condition, or disability as only one part of the whole person. Describe what the person ‘has’ rather than what the person ‘is.’”
The guide acknowledges that some communities prefer identity-first language, but recommends to “default to using person-first language if preference is not known or cannot be determined.”
In March, the CDC published a webpage titled, “The Public Health Approach to Long COVID,” the agency’s plan to combat stigma and misinformation. Ironically, this “plan” classifies people with Long COVID as “patients.” It institutionalizes the very stigma it claims to fight, imposing a paternalistic medical identity onto millions of adults and children with Long COVID.
Who at the CDC came up with this great idea to combat stigma with … more stigma?
Other organizations have also used stigmatizing language. The U.S. government commissioned the National Academies of Sciences, Engineering, and Medicine (NASEM) to establish a definition of Long COVID. Clinical findings will naturally use the term “patients” when defining a disease. However, NASEM’s report extends “patient” beyond clinical contexts to describe every other aspect of life for people living with Long COVID.
I compared this to another NASEM report on chronic conditions in women and found it used person-first language. Women’s lives are discussed separately from their conditions. “Patients” is used only in clinical contexts.
Why are the very people fighting for Long COVID’s legitimacy the ones adding stigma to it?
Why are the very people fighting for Long COVID’s legitimacy the ones adding stigma to it?
Merriam-Webster defines “patient” as “an individual awaiting or under medical care and treatment.” It carries an inherent power imbalance: a doctor’s influence outweighs your own. Outside of a clinical context, “patient” places a person still within a hierarchy of dependency and diminished agency.
Reinforcing an illness identity in a climate already primed to view Long COVID as psychological is dangerous.
Researchers who established a definition of “stigma” suggest that groups are the target of stigma, but individuals are the ones who pay the price. “Long COVID patient” meets all aspects of their definition: labeling, negative stereotyping, assigning people to a separate category, and power asymmetry.
“If stigma means that a person is viewed as ‘not quite human,’ social death means that a person is viewed as ‘not quite alive,’” writes Joe Wright about the beginnings of AIDS activism.
Stigma is also the spark that ignites revolutions.
AIDS activism inherited the tactics and language of the civil rights, disability rights, and women’s health movements, including mass mobilization, direct action, and a demand for full legal recognition.
Disability activists fought for autonomy, self-determination, and accessibility — not to be recipients of charity or pity. They rejected dehumanizing language and refused to be objectified by diagnoses and labels, stating, “We are people first.”
They ended the legal segregation based on personal medical conditions, encoding disability discrimination as a civil rights violation into law.
AIDS activists synthesized aspects of all these movements into the Denver Principles: a set of demands, written by 11 people with AIDS, requiring active participation in the medical and political decisions affecting their lives. This foundational document empowered people with HIV and AIDS, and became known as the Magna Carta of AIDS activism, laying the foundation for ACT UP and the Treatment Action Group.
Seeing Long COVID advocates look to Larry Kramer for inspiration, and, in the same breath, post on social media calling people “AIDS patients,” “HIV patients,” and “Long COVID patients,” betrays the very ethos that gave ACT UP its power.
Calling people who died from AIDS-related illnesses “patients” desecrates their memory. It erases them.
“Patients” is empty of any meaning. It doesn’t carry any weight or political power. Are we still going to be called “patients” when we are no longer here?
“Patients” is empty of any meaning. It doesn’t carry any weight or political power. Are we still going to be called “patients” when we are no longer here?
In New York City, in the early 1990s, I visited a woman who was in the hospital, seriously ill with AIDS-related complications. Abandoned by friends and family, she didn’t have a single visitor. She told me she was studying for her GED. I didn’t think she would survive the next few days. Her name was Anita.
In those years, I ate holiday dinners in church rectories with people with AIDS whose families wanted nothing to do with them. I had friends so sick I thought I’d never see them again, only to watch them onstage after new medications were developed. The last time I saw Anita, she pointed to her GED, framed above her hospice bed. She had a huge “F-you” smile because she knew no one believed she’d achieve her dream. Anita died a few days later.
Never once did I hear anyone with HIV or AIDS call themselves or be called a “patient.” What I did hear echoing through the streets of New York City was …
“What do we do?”
“ACT UP!”
“Fight back!”
“Fight AIDS!”
“Nothing about us without us” is a line in the sand, demanding decisions are not made without the involvement of the people most affected. Patient advocates and organizations are vital for this role. However, it doesn’t give them the authority to invoke “Nothing about us without us” to justify medicalizing millions of people with the identity of a “patient,” erasing their agency.
Personal preference is not collective consent.
Every time I see “Long COVID patient,” I feel my humanity pickpocketed.
I am not a patient. I’m a person recovering from a virus that has killed tens of millions of people worldwide in just six years. I’m not some nebulous entity roaming around town in a hospital gown, walking an IV pole like a pet.
I got COVID-19 in March 2020 while living in New York City, where I was working as a singer/songwriter and had begun rehearsals for my one-woman play, 222 West 23rd St.
I didn’t recover in the two weeks that public health officials said the virus, in most cases, would last. Instead, I experienced an evolving cascade of scary and debilitating symptoms. Seeking medical care numerous times for crushing heart pain, the sensation of breathing in fire, and a terrifying feeling like I was suffocating — then being dismissed with “anxiety” — was a hell I hope no one ever has to experience.
In March 2021, I received medical care at the Mount Sinai post-COVID heart clinic. I had tangible proof. It was a start in addressing the multisystem rupture COVID-19 had inflicted on my body.
Language is power. It can be a lifeline for connection, or a barrier.
People with Long COVID are still mothers, fathers, daughters, sons, spouses, friends, coworkers, and neighbors. Person-first language respects people’s dignity.
Civil rights movements paved the way, and the Denver Principles gave us a powerful blueprint. Destigmatizing language guides exist for a reason.
I am calling on the Long COVID community to understand why person-first language is essential and to implement it going forward.
This means organizations updating mission statements and public-facing language to “people with Long COVID.”
Medical providers and researchers using person-first language, or “participants” when applicable, in public communication.
To the media, remember you are telling the stories of people — people with Long COVID.
It’s easy for people to think, “They are patients. I’m not like them.”
Erasure doesn’t begin with violence, but with words.
It’s easy for people to think, “They are patients. I’m not like them.” Erasure doesn’t begin with violence, but with words.
Elizabeth Pugh is an actor, playwright, and singer/songwriter.
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