On Chronic Illness Sucking

For the last two years I’ve been researching online communities populated by people who suffer from chronic illnesses. I’m mostly concerned with how ill people go about collaborating and commiserating in these new social spaces and with what happens when they do. The goal, I think, is to generate new intellectual insights about patienthood in the Internet era. So far, though, my primary intellectual reflection is embarrassingly obvious and yet not uttered often enough in public discourse: being chronically ill sucks.

This insight has been in my periphery for a while now, but it hadn’t come into focus until the last few weeks. I’ve spent the last year and a half silently observing patients interact in a prominent online illness community, but three weeks ago I broke my silence and began asking its members to participate in interviews with me.

Medically speaking, I’m studying people who suffer from a relatively extensive range of chronic conditions: gastrointestinal (ulcerative colitis) to musculoskeletal (chronic nerve pain), inflammatory (rheumatoid arthritis) to infectious (Lyme), with symptoms located in the head (chronic migraine), the stomach (Crohn’s), and elsewhere (ankylosing spondylitis). Likewise, the diversity of age represented by my interview subjects (25 to 65 years old) is particularly wide. Still, contrary to this abundant diversity among my subjects, these people’s health lives are unified by one feature: they are all really hard.

It is alarming that I — of all people — hadn’t fully grasped this basic fact about a vast segment of our population (literally millions of individuals have a chronic condition) until speaking with several of them at length. After all, I’m in the unique position of having spent the last two years reading dozens of studies and books about ill people. Still, empathy for the complexly challenging experience of chronic illness is fleeting. There’s something about the everyday-ness of chronic illness that is simply too alien to understand until it is upon a person.

Maybe euphemistically, sociologist Michael Bury first characterized chronic illness as a “biographical disruption” in 1982. A person’s biography — her or his trajectory through life — is disrupted insofar as their relationship with their family, friends, job, hobbies, and more are drastically altered. Chronic illness transforms a person’s very concept of self. Their pursuits and relationships become chained to unhealth, and their independence is slowly replaced by proliferating forms of dependence (on medical institutions, members of their social networks, insurance providers, the state, their medications, and more).

And none of that even addresses the profound psychological impact that becoming chronically ill can have. It forces a person to, in short, become more intimate with human mortality. As Bury described it, “chronic illness involves a recognition of the worlds of pain and suffering, possibly even of death, which are normally only seen as distant possibilities or the plight of others.” It is unsurprising that most chronic conditions are correlated with depression — something that doctors call “psychiatric comorbidity.”

Diagnosis & Treatment: An Odyssey

One of the reasons that healthy people have a hard time empathizing with chronically ill people is because they have a skewed understanding of diagnosis. The average person’s experience with acute, short-term illness (things like strep throat) includes that medical professionals have objective tests that rapidly verify the illness’s existence. Strep tests detect strep throat in as quickly as ten minutes these days; yeast infection tests are instantaneous. We are conditioned to imagine diagnosis, then, as a one-stop and largely objective process.

On the contrary, for many chronically ill people, diagnosis is a lengthy and harrowing campaign. The fact is that most chronic conditions are not completely understood in medical science in terms of origin and symptom presentation — they are too random, or they mimic other conditions, or they don’t respond to treatments in expected ways, or they elude biomedical technology’s capacity to objectively detect them. Consequently, chronically ill people experience these realities of how medicine works as a system in which they must “prove” their illness. Put another way by anthropologist Joseph Dumit, many chronic conditions are “illnesses you have to fight to get.”

This matters because, in terms of support, getting sick doesn’t count as being sick until it is recognized by relevant audiences: one’s doctor, one’s family, one’s insurance company, etc. Official diagnosis operates as a shorthand in our culture for the fact that a person is “actually” sick. When a doctor can’t “name” a set of symptoms through the process of diagnosis, the patient’s suffering is compounded and prolonged. Until then, the truth of if and precisely how one is suffering remains precarious in the eyes of others. After all, it could just be “all in their head” — an accusation that many of my interview subjects report having routinely encountered.

In terms of support, getting sick doesn’t count as being sick until it is recognized by relevant audiences: one’s doctor, one’s family, one’s insurance company, etc.

Of course, the major difference between acute and chronic illness is that, upon diagnosis, treatment is an ongoing process for the latter. Patients with gastrointestinal conditions like ulcerative colitis or Crohn’s, for example, embark on a years-long journey that often involves radical dietary changes, trial-and-error experimentation with prescription medications, and the specter of various surgeries — all while contending with symptoms that significantly restrict how they would otherwise live their lives. Chronic pain patients can expect much of the same. And people who suffer from infections like Lyme contend with waves of symptoms that significantly limit their physical capacity as well as their mental wherewithal.

Tellingly, almost all of my interview subjects voluntarily use a percentage to describe the variable impact of their illness on their lives: “I was down to about 30 percent of myself at first,” “I got up to 80 percent when I was in remission,” etc.

Moving On(line)

On top of all of this, nearly all of them go through it without knowing others who are making the same lonely journey. And that’s part of why they see their online illness community as so valuable. Until very recently in history, it was generally quite rare for people with a chronic or unusual condition to meet others who had the same thing as them. The Internet revolutionized this longstanding aspect of chronic illness. Now, not only can patients access an ocean of information about their illness, they can collaborate and commiserate with others who share their condition. This revolution in the experience of illness is the heart of my dissertation.

The people I’ve been speaking with sometimes end their interviews by asking which chronic condition I suffer from. (I don’t.) For many of them, their experience has been marked by feelings of such disregard and solitude that a healthy person having an elective interest in illness comes as a surprise.

In studies like mine (whose charge is to transform “data” into “findings,” rather than tell the stories of the individual research subjects), individuals are at risk of being compounded and vaporized into the academic ether. The last few weeks of interviewing, though, have been a blunt reminder to me that real people exist behind and within academic studies of health and illness. As this big push for data winds down, I am resolving to keep the individuals at the center of my investigation. There’s so much more to say about chronic illness than I’ve said here — and I hope to be able to express some of it on their behalf as I proceed with my research.