Chernobyl, Crohn’s disease, and the persistence of chronic illness

In the early hours of April 26, 1986, steam explosions at the Chernobyl nuclear reactor, caused by inadequately trained personnel and errors in the plant's design, erupted into a fire, leading to meltdown and an enormous release of radioactive fallout.

Helicopters spent the morning ferrying in tons of sand, lead, clay, and boron to pour over the burning reactor. Firefighters rushed to the scene, unaware that they were trooping into a highly toxic environment. By that evening a blanket of fog drifted over Chernobyl carrying deadly cesium and strontium.

For many in the city, nothing had broken the peace of a serene afternoon except the eerie sense that the birds had stopped singing.

Understandably, as information trickled out from the government, the response was absolute panic. The interviews conducted by Nobel Prize–winning journalist Svetlana Alexievich show the depths of confusion residents of the contaminated zone experienced. Nadezhda Vygovskaya, an evacuee from the town of Pripyat, noted that from "the very first I felt that we were Chernobylites, that we were already a separate people."

Chernobyl has its obsessives, its pilgrims and conspiracy theorists. The root of the fascination this disaster inspires is in that sense of separateness, of a people forcibly riven apart.

I grew up with symptoms that co-extend into those exposed to radiation poisoning, namely: a heightened risk of cancer and anemia, chronic vision loss, fatigue, diarrhea, and severe pain related to inflammation. Lacking the proper medical diagnosis, my condition went untreated, and was allowed to fester inside of me. When I first read Alexievich's interviews, it felt almost like a homecoming. Oh, I thought, here are the people like me.

Zova Bruk, an environmental inspector, speaking with Alexievich, noted the questions that immediately bloomed in her mind: "What are you eating, what are you feeding your kids? What's dangerous, what isn't? Should you move to another place, or should you stay?"

Crowds swarmed nearby railway stations and booking offices, only to find tickets out of the area nearly impossible to come by. Local pharmacies sold out of iodine, a crucial component in the first of many purported miracle cures against radiation poisoning. Those who swallowed these solutions burned their throats and digestive tracts.

A week later, on May 1, old norms had already reasserted themselves. The minister of health had dispensed laughably impotent advice, telling locals to keep their windows shut, and to wipe their shoes on a wet rag before going inside.

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May Day celebrations occurred. Kids danced on the main street of Kiev, 70 miles out from the reactor. Inhaling toxic fumes to celebrate the communist leaders, who, almost at that very moment, were rushing their own children to the airport in Borispol, to extract them from the radioactive threat.

The ease with which danger was pushed from the minds of locals seems impossible to understand. "[I]t was so natural," Bruk continues, "like waking up in the morning and walking out into your garden. And you're standing there knowing that it's all been poisoned."

Physicians, untutored in the possible health risks of radiation poisoning, mocked the locals who came to them for advice, accusing the victims of having a bad case of radiophobia. Alexievich spoke with Larisa Z., a mother in the affected area, who spoke of how medical professionals dismissed the claims: "We have instructions. We are supposed to call incidents of this type general sicknesses. In 20 or 30 years, when we have a database about Chernobyl, we'll begin connecting these to ionized radiation. But for the moment science doesn't know enough about it."

This ignorance was compounded by a state that felt determined to mute any further scandal as a result of the international embarrassment of the reactor failure. Chernobyl had become an indicator of the intentions and capabilities of the new Gorbachev government, and indeed, the lies circulating around this disaster, and their eventual discovery, are often credited with the downfall of the Soviet system.

In a single year, the USSR Ministry of Health officially revised the human tolerance dose of radioactivity three times, constantly adjusting itself to accommodate the parameters of a crisis that it was eager to swallow as nothing too severe. The ministry eventually settled on 35 rem, or roentgen equivalent man, a unit of radiation dose equivalent, which determines the maximum acceptable risk level before human health is impaired.

On October 19, 1989, Dr. L.A. Ilyin, the former head of the National Commission for Radiological Protection, declared in a public hearing that: "Thirty-five rem is not a dangerous level; it is one at which people in charge should begin to take decisions."

Experts disagree about the measurement at which radiation becomes life-threatening, but a historical comparison makes the danger terrifyingly clear. The A-bomb dropped on Hiroshima weighed 4.5 metric tons, and unit four of the Chernobyl Nuclear Power Plant released 50 tons of uranium dioxide, iodine-131, plutonium-239, neptunium-139, cesium-137, strontium-90, and many other radioisotopes with varying half-life periods. In terms of cesium-137 alone, Chernobyl equals three hundred times the release at Hiroshima.

The arrogance and disregard for scientific fact that the decisions of the Ministry of Health displayed are succinctly summarized by the journalist Alla A. Yaroshinskaya: "It was as if issuing a council of ministers decree on repealing Newton's law, say, would have instantly made it ineffective."

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. —Susan Sontag, Illness as Metaphor

My own interest in Chernobyl began in 2013 when I was finally diagnosed with Crohn's disease, an autoimmune disorder that causes my body's own defenses to turn against themselves, tearing up my intestines like newspaper print.

For at least the preceding 10 years I had been struggling with chronic symptoms that went misdiagnosed. More than anything I wanted to believe that I was healthy, even though everything going on inside me shouted otherwise. And so I took in the apathetic responses I received from doctors as a gift, ceased communicating my discomfort, and chose instead an isolated, arduous silence.

In coming to the Chernobylites, I was searching not for a communion of the afflicted, but instead a better understanding of what borders are thrown up between the diseased and the healthy, and if and how those walls could be crossed. I identify with the victims of Chernobyl not as being on a similar continuum of suffering, but rather because we were all citizens of this other place: a country whose contours are defined by a lack, an inability to articulate, or, more precisely, an absence of language.

From the outside it's easy to believe that survival is the first priority of the sick, and so a failure to articulate your condition seems absurdly self-defeating. But the consequences of disability are simply one node in a complex web of difficulties that a patient might struggle with, not the least of which is the covert labor of "passing" as healthy; of working hard to convince others and oftentimes even yourself that all is well, that you'll wake up tomorrow feeling better than before.

Svetlana Alexievich observes that "Chernobyl has not been experienced in the same way everywhere … [but] what is remarkable about the residents of the most affected areas is the indifference with which they talk about it." Professor Olga Kuchinskaya at the University of Pittsburgh credits this to her belief that "to recognize the risks of radiation, people must not trust their senses, which register nothing. Laypeople become dependent on scientific and administrative practices, and on the media, for identifying risks."

As Alexievich argues, when an event occurs "for which we do not yet have a conceptualization, or analogies, or experience, something to which our vision and hearing, even our vocabulary, is not adapted," we, in effect, become insensate to it. "Our entire instrument is tuned to see, hear or touch," she elaborates. "But none of that is possible."

An abandoned classroom near Chernobyl, 30 years later. (Sean Gallup/Getty Images)

Our relationship with pain and illness is socially situated and historically constituted. It is through articulation in language that we validate our distress. As Elaine Scarry writes in her book The Body in Pain, the "relative ease or difficulty with which any given phenomenon can be verbally represented also influences the ease or difficulty with which that phenomenon comes to be politically represented."

And this problem of articulation fosters a double bind in the kind of communities for which Chernobylites can be considered emblematic. Laypeople depend on experts to understand the implications of a diseased body, and medical professionals depend on the testimony of patients to make those judgments. But a disconnect in that communication leaves the ill doubting not only their pain and discomfort but their license to hurt as well.

These disconnections occur not only from medical ignorance but also from deeply entrenched scientific convictions. I first saw a doctor for my Crohn's disease when I was 9, just a shy kid who folded behind his mother's legs when the physician addressed me directly. The answers to the questions he asked were first relayed to mom, who could translate my pipsqueak reticence into normal human speech. Under these conditions I couldn't blame anyone for losing their patience and reaching for the quickest fix from the prescription pad.

But one thing becomes lucidly clear as I look back on my repeated misdiagnoses, which is that I was treated not based on the expression of my symptoms, but rather on the efficiency of the pills I was prescribed. Laxatives and suppositories were meant to flush me completely, to wipe the slate clean of any impurities and salt the earth of sickness.

What these solutions didn't take into account is that the problem was more deeply ingrained. The most intimate home we have is our body, and mine had been corrupted.

During a March 2015 talk, celebrated oncologist and author Siddhartha Mukherjee discussed the centennial of the introduction of antibiotics into the United States. He argued that this diagnostic revolution, which made previously lethal diseases such as pneumonia, syphilis, and tuberculosis curable or treatable, has also had adverse effects. Namely, it has reduced the scope of treatment to: Have Disease, Take Pill, Kill Something.

The simplicity of this idea was so compelling that it came to dominate the field of biology. As Mukherjee explains:

It was a transformation like no other. And we've really spent the last one hundred years trying to replicate that model over and over again in non-infectious diseases, in chronic diseases, like diabetes and hypertension and heart disease. And it's worked, but it's only worked partly.

Antibiotics "created such a perceptual shift" in our process of imagining the possibilities of treatment that "it really colored, distorted, very successfully, the way we've thought about medicine," to the point where we have become unthinkingly resistant to other options.

This avoidance is stressed by the small fraction of chemical reactions that can actually be targeted by the full scope of medicinal chemistry, which is estimated to be about 0.025 percent. The rest, as Mukherjee explains, is "chemical darkness."

And the shadow cast on individual health by this limitation is growing by the year. According to the Centers for Disease Control and Prevention, as of 2012, about half of all adults in the US have one or more chronic diseases such as arthritis, cardiovascular, or kidney disease. In 2010 it was calculated that seven of the top 10 causes of death were a result of these types of illnesses. In that same year, chronic conditions accounted for a staggering 86 percent of health care costs in the country.

Mukherjee's response is to reverse the telescope on how treatment functions. Instead of zooming in, toward specific cells or chemical functions, he zooms out, first to the organisms in which this biology takes place, and then to the spaces that house them. We already know there are pro-carcinogenic environments. Mukherjee's example is the prison, in which loneliness, depression, confinement, and the potent and addictive neurostimulant of nicotine combine to create a festering ground for cancer.

But if these specific conditions could be not just avoided but expelled entirely, we might craft anti-carcinogenic environments as well. And, indeed, we've already begun to do just that. Mukherjee cites specifically the altered hormonal milieus for breast cancer, and the shifted metabolic milieus employed to combat other incarnations of the disease.

We already know that for mental illness, drugs alone are far less effective than when they are employed in tandem with talk therapy. New pills are exciting, and careers are built off their discovery. But it is crucial that we also demand bold developments in the diagnostic and therapeutic environments that foster care.

Chernobyl wasn't just an industrial failure of enormous proportions; it was also a failure to adjust the terms under which the Russian people, or at least those privileged enough to have ties with the centers of power, understood themselves.

Valentin Borisevich, former head of the laboratory of the Institute of Nuclear Energy at the Belarusian Academy of Sciences, describes the period as being obsessed with "the cult of physics." So much so that even "when Chernobyl blew up, it took a long time to part with that cult."

For Soviet Russia, science, and specifically atomic energy, was a magical salve for perceived slights from the West, and an endlessly renewable source of hope. The unilateral faith in the authority of the atom was a product of its being ingrained in the basic aspirations of Russian nationalism. "The history of the atom," Borisevich expands, "it's not just a military secret and a curse. It's also our youth, our era, our religion."

The administrative response to Chernobyl easily and rightly earns our censure. But it should also invoke in us a desire to expand on our own perspectival limitations. The Gorbachev government refused, and indeed was ideologically predisposed not to accept, the fact that they had created a toxic landscape. Our task should always be to understand what we fail to see.

My experience with Crohn's disease has taught me that a large portion of our medical establishment functions as a kind of disaster management. I didn't receive the attention I needed until I was wheeled into an ER with fistulas in my intestines that were leaking bile and blood. Performing holding patterns until a problem manifests itself or a miracle pill is produced are equally untenable strategies for approaching new risks to human health.

We come into this world with a common destiny: to have a body. But from the moment of birth, an almost infinite series of permutations continuously alter that fate and begin to separate us in both minute and major ways. Some bodies find a better home in this life than others; some bodies struggle to carve out their own safe spaces. If medicine is the project of promoting better health, then it must continuously adapt itself to new avenues of diagnosis, or leave behind the ill that it fails to recognize.

Marcus Creaghan is a writer based in Toronto and New York. His work has appeared in Catapult, Entropy, and F(r)iction magazine, and he is currently enrolled in the writing program at Columbia University. You can reach him on Twitter @marcuscreaghan.

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