Everything Is Tuberculosis: The History and Persistence of Our Deadliest Infection

by John Green

In the Global North, we still sometimes hear about the benefits of colonialism, how it brought roads and hospitals and schools to colonized regions, but this perspective is not supported by strong evidence.

In general, colonial infrastructure was not built to strengthen communities; it was built to deplete them.

There is nothing inevitable or natural about the impoverishment of countries like Sierra Leone.

But I wonder if we also ignore illness because of our bias toward agency and control. We would like to imagine that we captain the ships of our lives, that human history is largely the story of human choice.

We simply don’t want a world where even the most powerful emperor can be felled by mere infection.

The average untreated case of active tuberculosis will spread the infection to between ten and fifteen people per year.[*2] One might acquire TB on a crowded city bus, or from lying next to a sick person at night,

Something like 90 percent of people die of disease, a phenomenon so entrenched in human life that we attribute most such deaths to “natural causes.”

By World War I, the poet Wilfred Owen turned that idea on its head, arguing that deaths from war were “obscene as cancer” and calling Horace’s line “that old lie.”

Before vaccination, C-sections, infection control, and antibiotics, the death of children was routine. About half of all humans ever born died before the age of five. Child death was so common that it had to be acknowledged as natural.

“Nothing is more punitive than to give a disease a meaning,” Susan Sontag famously wrote, and yet we go on giving disease meanings anyway. These illness narratives are often not just a strategy for conceptualizing the pain of others, but also a way of reassuring ourselves that we’ll never feel that pain.

It has also been stigmatized as a drunkard’s illness, or an illness caused by sexual immorality, or poor hygiene.

But the illness could never be entirely dismissed by stigmatizing gluttony and exercise, because it was not only the constipated alcoholics who suffered from consumption. The disease was simply too common to be an illness of moral failing.

Europeans came to romanticize consumption, to see the illness as beautiful and ennobling. It’s tempting to imagine this romanticization as the opposite of stigmatization—rather than discounting people as stigma does, romanticization lifts them up as paragons of beauty or intellect or some other virtue. But really, I see these as complementary strategies used to make the sick into an “other,” a group of people fundamentally distant and different from the rest of the social order.

Imagining someone as more than human does much the same work as imagining them as less than human: Either way, the ill are treated as fundamentally other because the social order is frightened by what their frailty reveals about everyone else’s.

In simple words, their mental eccentricities result from the derangement of bodily health.” This is precisely what I mean when I say that romanticization is not a kind or generous way of treating the ill.

This idea was known as spes phthisica, or consumptive spirit, which Dr. David Morens defines as “a condition believed peculiar to consumptives in which physical wasting led to euphoric flowering of the passionate and creative aspects of the soul.”

Keats’s friend and caregiver Joseph Severn reported that the poet would sometimes awake in tears, devastated to still be alive and in such pain. A few months before his death, Keats wrote what amounted to a will. He had no money. “My estate real and personal consists in the hopes of the sale of books publish’d or unpublish’d,” he wrote, and then atop the note, he scrawled and underlined a single line of iambic pentameter: “My chest of books divide among my friends.”

Patients with active tuberculosis typically become pale and thin with rosy cheeks and wide sunken eyes due to the low blood oxygenation and fevers that often accompany the disease, and these all became signals of beauty and value in Europe and the United States.

Henry David Thoreau wrote in his journal, “Disease and decay are often beautiful—like the pearly tear of the shellfish or the hectic glow of consumption.”

He wrote beautiful poems, and his interest in writing blossomed during his illness.

There was always extensive illness and death from consumption in colonial India; it just went largely undetected and uncounted by colonial authorities. After all, the entire premise of colonialism relied on white supremacy, and the entire premise of spes phthisica maintained that only superior and civilized (read: white) people could become consumptive.

Acknowledging that consumption was common among enslaved, colonized, and marginalized people would have undermined not just a theory of disease, but also the project of colonialism itself.

The rise of cities and sweatshops meant crowded markets, factories, and streets, which proved an ideal breeding ground for TB.

And so TB revealed itself to be not a disease of civilization, but a disease of industrialization; of crowding and intermingling in huge cities with packed tenements and factories where coughed-up particles could linger in the stale air.

the world is inherently more complex than the narratives we impose upon it, just as the reality of experience is inherently more complex than the language we use to describe that reality.

The death rate from TB in Canada’s residential schools appears genuinely unprecedented in human history.

But in residential schools, the rate was 8,000 per 100,000—meaning that 8 percent of all kids confined in these schools died of tuberculosis each year. And these inequities persist—today, Inuit people are over 400 times more likely to contract tuberculosis than white Canadians.

People who are treated as less than fully human by the social order are more susceptible to tuberculosis. But it’s not because of their moral codes or choices or genetics; it’s because they are treated as less than fully human by the social order.

This brings us back to an important facet of understanding human responses to illness—stigma and the ethical narratives we construct around illness.

Framing illness as even involving morality seems to me a mistake, because of course cancer does not give a shit whether you are a good person. Biology has no moral compass. It does not punish the evil and reward the good. It doesn’t even know about evil and good.

Stigma is a way of saying, “You deserved to have this happen,” but implied within the stigma is also, “And I don’t deserve it, so I don’t need to worry about it happening to me.” This can become a kind of double burden for the sick: In addition to living with the physical and psychological challenges of illness, there is the additional challenge of having one’s humanity discounted.

Stigma is very complex, of course, but researchers have identified certain hallmarks of highly stigmatized illnesses. Chronic illnesses are more likely to be stigmatized than acute ones, for instance, as are illnesses with high levels of perceived peril.

If an illness is seen to be a result of choice, it is more likely to be stigmatized. Mental illness is often viewed as a choice or a moral weakness, as are some kinds of heart disease and cancers. And even when there’s no evidence of a clear link between character and illness, we will invent one: It was long believed, for example, that cancer resulted from social isolation, or from bottling up one’s feelings.

Even when these explanations are cruel and dehumanizing, we embrace them—because tiger got to sleep, and bird got to land, and man got to tell himself he understand.

A young woman who was abandoned by her family told me, “To them I am not a person.” There were times that she wished she had died of TB rather than being cured of it, because the ongoing stigma was so profound.

The word “invalid,” of course, gets at the core of what it meant to live with chronic illness—you were a person outside of society, invalid in the social order, separated from your family and your community. Even if you convalesced at home, you were still kept from many of the rhythms of daily life. You might not have the energy or health to go shopping, or attend church, or visit family. And

At many institutions, crying in public was strictly forbidden, because it would harm morale and thus one’s overall chance for a cure.

Everything about life in Gale’s sanatorium was oriented around control of the patient—patients were told when (or whether) they could read and write, how often (or whether) they could stand up, how often (or whether) they could receive visitors, and on and on. Patients spent many hours every day curing, which meant sitting or lying absolutely still, not straining even to speak or laugh.

That discordance makes it even more difficult to “keep a positive attitude,” which was enshrined as a treatment strategy for TB, just as it is now enshrined as a treatment strategy for diseases that are sometimes survivable but often aren’t, like cancer.

Even as TB became curable, the cure often did not reach the places that needed it most. By 1980, the RIPE treatment protocol had been in use for decades in the U.S. and western Europe. Efforts at case-finding and prevention meant that rates of TB had dropped in rich countries so dramatically that tuberculosis felt like what it should have been: history.

But in dozens of countries, treatment either wasn’t available or reached patients only sporadically. From India to Bolivia to Cambodia to Ethiopia, low- and middle-income nations continued to have TB death rates higher than those seen in the U.S. before the antibiotic era. In Ethiopia, for instance, TB mortality rates in 1990 resembled those in the U.S. in 1882, the year Robert Koch identified the venomous little atom of M. tuberculosis.

These failures largely resulted from rich communities understanding tuberculosis through the lens of racism and colonialism. It was too often assumed that delivering RIPE protocols to poor communities was either impossible or else inadvisable, because—as S. Lyle Cummins put it at the beginning of the antibiotic age, the “African native” was too “child-like in respect to mentality and outlook” to be trusted to take or dispense medicine as prescribed.

Another patient I spoke to abandoned the pills because they made her terribly sick when taken without food, which she could not afford.

When a program loses a large percentage of its patients, is this a compliance problem or a surveillance problem? Is it a patient’s fault when he or she cannot afford the food necessary to ward off the hunger brought on by the drugs?” More broadly, is it a patient’s fault if they are too disabled by depression and isolation to follow through on treatment? Is it a patient’s fault if they or their children become so hungry that they feel obliged to sell their medication for food? Is it a patient’s fault if their living conditions, or concomitant diagnoses, or drug use disorder, or unmanaged side effects, or societal stigma result in them abandoning treatment? Why must we treat what are obviously systemic problems as failures of individual morality?

Many patients have described the experience of receiving their drugs as humiliating—they may be handed their medicine while being told that this only happened because they were unclean or poor or otherwise lesser.[*]

and yet somehow we always seem to blame the patient for noncompliance, rather than blaming the structures of the social order ...

And so DOTS, even as it expanded treatment dramatically, has also continued the longstanding pattern of distrust and stigmatization of tuberculosis patients. It also offered only one solution. As the TB researcher Dr. Carole Mitnick explained, “Like any one-size-fits-all solution, DOTS will fail a lot of people.”

The technician did not want to risk contracting TB. But of course the patient also did not want to cough, did not want to be sick, did not want to be shouted at for being ill.

But there is limited profit motive.[*2] The underinvestment in new classes of drugs to fight bacterial illnesses is the central cause of growing antibiotic resistance.[*3] It’s easy to blame patients or providers or pharmaceutical companies, but really all of humanity has collectively chosen not to put more of our shared resources toward new treatments for disease. Some of this can be chalked up to our economic systems—the newest antibiotics will not be prescribed as often, meaning they won’t be as lucrative as, say, developing a drug that hundreds of millions will take to control blood pressure.

But the market need not be the only determinant of human health. Instead, we could invest more public and philanthropic money into research and development of drugs, vaccines, and treatment distribution systems. We could reimagine the allocation of global healthcare resources to better align them with the burden of global suffering—rewarding treatments that save or improve lives rather than treatments that the rich can afford.