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Journal of Medical Humanities, Vol. 25, No. 4, Winter 2004 (
Coming Out: Considering the Closet of Illness
Kimberly R. Myers1
This essay explores key concerns surrounding “coming out” as a person with
illness and addresses important professional and social considerations for those
who are closeted in various kinds of illness. Using central tenets of Queer Theory
and Disability and Cultural Studies as a theoretical base, I examine the politics
of coming out in the specific context of my lived experience during the 2002 NEH
Summer Institute, “Medicine, Literature, and Culture.” While such an environment
might foster unusual candor about personal illness experience, I discovered that the
choice to come out as a person with chronic, non-infectious disease (Inflammatory
Bowel Disease) was nevertheless complicated in interesting ways.
KEY WORDS: coming out; disclosure; stigma; chronic illness; Inflammatory Bowel Disease.
Important parallels exist between coming out as a queer person and coming
out as a person with illness: both involve a norm (or norms) and varying degrees
of deviance from that norm; both operate on a continuum ranging from denial to
self-acknowledgment to self-disclosure; both potentially involve significant risks
in personal, social, and professional spheres; and both can include internalized
shame and guilt. In the pages that follow, I discuss my own lived experience
with chronic illness during the National Endowment for the Humanities 2002
Summer Institute, “Medicine, Literature, and Culture,” in order to explore some
key concerns surrounding coming out as a person with illness. Drawing from
Queer Theory and Disability and Cultural Studies, I raise important professional
and social considerations for those who are closeted in various kinds of illness,
including infectious and heavily stigmatized diseases like AIDS, mental illnesses
like bipolar disorder, psychological disorders like anorexia nervosa and invisible
disabilities like erectile dysfunction.
correspondence to Kimberly R. Myers, PhD, Department of English, P.O. Box 172300,
Montana State University, Bozeman, Montana 59717-2300; e-mail: firstname.lastname@example.org.
C 2004 Springer Science+Business Media, Inc.
The month I spent with twenty-four other scholars at the NEH Institute in
Hershey, Pennsylvania, was, without question, the most intellectually invigorating
experience of my life. It was also one of the most challenging, psychologically.
From the start, my reasons for wanting to attend the Institute were both academic
and personal. As is true for many others who work in the medical humanities,
my scholarly interest in medicine initially coincided with a life-altering medical
experience in my family; my future stepson was diagnosed with a brain tumor.
The bioethical choices surrounding his surgery and subsequent treatment led me to
works of literature that explored similar quandaries, and I began writing on medical
issues in literature such as William Butler Yeats’s Steinach operation and Stephen
Crane’s novella, The Monster. When a steady stream of students began coming to
my office to discuss personal illness or medical crises in their families, I realized
how pertinent a course in literature and medicine would be to any undergraduate,
and I subsequently designed two different courses on this topic—a senior capstone
seminar for English majors and a more fully interdisciplinary seminar for our
Honors College at Montana State University. From the standpoint of my recent
scholarship and pedagogy, this Institute promised to be especially timely.
Equally germane to my interest in the NEH Institute is that I have contended for over a decade with Inflammatory Bowel Disease (IBD), a chronic, noninfectious disease that causes internal bleeding and a host of attendant challenges,
including profound fatigue, special dietary needs and easy access to a bathroom.2
Although when my disease “flares” some people might speculate that I’m not
“well” because I’m too thin or too pale, when I’m in remission, it is primarily an
invisible disability. Most of the time I can—and do—“pass” as normal, socially
and professionally, to everyone but my closest circle of family, friends and colleagues. But in the particular context of the Institute, where we openly encountered
and theorized issues of health and illness, I frequently found myself faced with the
decision of whether to “come out” about my disease—when, to whom, under what
circumstances, to what extent and in what manner. My multi-faceted positionality
as Fellow, visiting colleague and ostensible expert to patients I visited as part of the
rounding team of physicians and medical students3 complicated issues of coming
out in interesting ways.
Many excellent studies have been conducted on the stigma that accompanies
bothvisible and invisible illnesses,4 and as one would expect, the latter carries less
people confuse Inflammatory Bowel Disease (IBD) with Irritable Bowel Syndrome (IBS). Inflammatory Bowel Disease—whose two forms are ulcerative colitis and Crohn’s disease–permanently
harms the intestines and may lead to other serious diseases like cancer. Irritable Bowel Syndrome,
is not a disease but rather a disorder that causes the bowel to function abnormally. Both can include
abdominal pain, bloating, diarrhea and constipation, but only IBD entails intestinal bleeding and
pathologically significant change in tissue.
3 While we Fellows wore official badges that clearly identified us as Ph.D.s rather than M.D.s, I’m not
sure the patients made that distinction.
4 Three sources that are especially helpful are: Erving Goffman, Stigma: Notes on the Management of
Spoiled Identity (Englewood Cliffs, NJ: Prentice-Hall, 1963), arguably the most frequently cited work
Coming Out: Considering the Closet of Illness
stigma than the former. Especially when one’s disease is not readily apparent, it is
often simpler to remain closeted. In fact, if Erving Goffman’s assertion is correct—
that “normals” (i.e., those who do not suffer from stigmatization) believe that those
who are stigmatized are somehow less than human—“concealability” is the initial
and arguably the most important dimension of stigma.5 Similar to the common
societal assumption that everyone is straight because heterosexuality is the norm,
people assume that everyone who is not visibly macerated or otherwise disfigured
by illness is healthy. While I agree with scholars in both Queer and Disability
Studies who hotly contest such normative tendencies in general,6 I also believe
that situations exist in which an assumption of normalcy is not only not a bad thing
but is indeed expedient to all parties concerned. For instance, there’s no more
practical reason—no imperative, at least—for the person with illness to proclaim
his health status to the person beside him on an airplane than there is for the queer
person to inform the same passenger of his sexual preference. In circumstances
such as these, the person with invisible illness isn’t really making a choice to pass
as much as he is merely observing the boundaries of privacy and self-disclosure
that most of society accepts as desirable. In contrast to the person who does not
mention illness because there is no particular need to do so, the person who passes
deliberately conceals his condition because he perceives a threat of stigmatization.
In their illuminating study, “Physical Illness Stigma and Social Rejection,”
Christian S. Crandall and Dallie Moriarty conclude that while physical deviance
from the norm or an ideal can lead to social rejection, not all kinds of deviance
result in equal stigmatization. The authors examine physical illness according to
the six dimensions of general stigma discussed by Jones et al,7 and determine that
“two dimensions [of illness] predicted rejection: the severity of the illness, and
whether the illness was behaviourally caused.”8
At the time I was applying for the NEH fellowship, I had not read this—or
any—study of the stigmatization of people with illness. But the personal statement
I wrote as part of that application reflects an intuitive awareness shared by most
in subsequent studies and eminently readable; Gloria Joachim and Sonia Acorn’s “Stigma of Visible
and Invisible Chronic Conditions,” Journal of Advanced Nursing 32, no. 1 (July 2000): 243–48; and
Christian S. Crandall and Dallie Moriarty’s “Physical Illness Stigma and Social Rejection,” British
Journal of Social Psychology 34 (1995): 67–83, an account of a study that began with the question,
“What is it about physical illness that causes rejection?”
5 See also Edward E. Jones, et al., Social Stigma: The Psychology of Marked Relationships (New York:
W. H. Freeman, 1984).
6 For instance, in a recent essay that delineates “the points of convergence between AIDS theory,
queer theory, and disability theory,” Robert McRuer argues that “disability should be understood
as a minority identity, not simply as a ‘condition’ of lack or loss to be pitied or ‘overcome”’ and
that such a disability identity stands in “opposition to able-bodied hegemony” (See Robert McRuer,
“Critical Investments: AIDS, Christopher Reeve, and Queer/Disability Studies,” Journal of Medical
Humanities 23, no. 3/4 (Winter 2002): 221, 223, 224.
7 See Jones, et al.
8 Crandall and Moriarty, 67. See also Bryan S. Turner, Medical Power and Social Knowledge (London:
Sage, 1987) 173.
people with chronic illness: we must be careful how we present ourselves and
our illnesses, especially to those who do not know us personally and therefore
cannot see the ways in which we competently navigate professional and social
responsibilities. Typically, when I submit a proposal for a conference or an essay
for potential publication, I have no need to pass; it doesn’t occur to me to mention
my illness because it is irrelevant to my ability to write an article or deliver a
paper. But because the NEH Institute was based on issues of health and illness
and because the co-directors of the Institute, Anne Hunsaker Hawkins and Susan
Squier, specifically asked applicants to address both academic and personal experience in the application essay, I was immediately confronted with the decision to
come out. I promptly began creating “a rhetoric of self,” which sociologist Kathy
Charmaz defines as “an expressive set of claims to convince an audience, including oneself, of a particular view of self.”9 Inasmuch as Crandall and Moriarty’s
findings are accurate—that the severity of one’s illness and whether it is the result
of irresponsible behavior increase the risk of stigmatization–I was partly fortunate,
for Inflammatory Bowel Disease is idiopathic, of unknown cause; I did nothing
to bring about my own illness. But the severity of my disease at that time was a
tricky story to tell.
As I was writing the application, I had only recently entered the first complete
remission in the ten-year course of my disease. For most of that time, my disease
had been fairly well-managed by oral medication. But following a particularly bad
flare that lasted six months, I had recently undergone a different, somewhat risky,
medical intervention to stabilize significant blood and weight loss. Fortunately, I
responded very well to this therapy and had been feeling fine for several weeks.
I wanted (and felt I needed) to assure Anne and Susan that my health was now
“good” and that I would be able to participate in all the activities like other “normal”
people. Ironically, though, in this case admitting the severity of my illness might
also be a benefit. Given my significant involvement with clinical medicine from
the perspective of a patient, I could speak with authority on certain matters slated
for discussion. Even more important, though, was that my experience of so many
different domains of medical culture—from physician’s office to phlebotomist’s
lab to “procedure” room to hospital—had made me keenly curious to observe these
sites from the other side. In short, I understood that my multi-faceted positionality
as patient would enhance my credibility as someone who could contribute meaningful ideas to the group and who would do so with full commitment. It was clear
that I should come out with my illness, but how could I manage to do so and still
assure Anne and Susan that my illness would not compromise my ability to work
effectively as a Fellow?
Compounding this dilemma was the fact that my illness originates and resides
in a part of the body that people outside the medical field are reluctant to discuss.
Charmaz, “Stories and Silences: Disclosures and Self in Chronic Illness,” Qualitative Inquiry
8, no. 3 (2002): 306.
Coming Out: Considering the Closet of Illness
Crandall and Moriarity list “sexually transmitted/not sexually transmitted” as one
of the dimensions of illness that influences social rejection, but they apparently
didn’t investigate the dimension of privacy/modesty associated with the afflicted
organs themselves. The average person isn’t reluctant to hear about chest pain
resulting from a chronic heart problem, but few are equally able to listen to stories
involving a person’s excretory organs. How is one to explain to “normals” the
need, during a particularly bad flare, to go to the bathroom thirty times a day? How
does one broach colonic bleeding and diarrhea? The answers to these rhetorical
questions are reflected in the dearth of references to such illness in literature
other than medical texts. Many literary characters endure some form of malady,10
but I know of only one piece of imaginative literature that explicitly features
Inflammatory Bowel Disease as the protagonist’s primary physical challenge. In
Sara Backer’s 2001 novel American Fuji, every mention of the disease or its
manifestations underscores the fear of social rejection. For example, Gaby, the
book’s protagonist, senses that her disease is beginning to flare and
sure enough, when she wiped herself, the toilet paper showed blood . . .. The challenge today
would be to get rid of Alexander Thorn without him noticing she was sick. Hers was not a
disease anyone understood; he would only find her disgusting . . .. Damn! She’d forgotten
to wipe the underside of the toilet seat, to erase the telltale splatters. She had to get him out
of here . . .. [S]he hurried back to the toilet. He’ll hear this, Gaby thought, huddling over the
bowl . . .. It was impossible to keep her illness secret in her own home. She could pass as
normal in public—she looked okay, no matter how sick she was. It was better to take teasing
about her need for privacy than to try to explain this humiliating affliction. Better to get the
job than to admit to chronic illness in an interview. Better to have friends who didn’t know
everything about her than ones who held her in contempt . . .. In the States, she couldn’t
mention her disease without getting revulsion and disgust in response. She had to hide it or
be judged by it . . .. [The disease was] heavy luggage she carried around invisible to others.
She often wondered if her burden would lighten if she could openly admit to being sick.
But even the most discreet, minimal description of her condition involved the combination
of the words “blood” and “diarrhea” and ignited reactions of “eew!” or “yuck!” or “gross!”
to shut her up. Ulcerative colitis was unmentionable.11
The disease that is “unmentionable” is not unlike the love “that has no name”
in the expressions of disgust it elicits from those who view it as uncomfortably
distant from what’s considered “normal.” In both cases—excretory function and
human sexuality—revulsion stems from a sense that something “natural” has gone
10 See Margaret H. Vickers, “Life at Work with Invisible Chronic Illness (ICI): The ‘Unseen,’ Unspoken,
Unrecognized Dilemma of Disclosure,” The Journal of Workplace Learning 9, no. 7 (1 July 1997):
240–52 for illustrations of how “popular literary works may perpetuate negativity towards illness
and disability” (245).
11 Sara Backer, American Fuji (New York: Penguin Putnam, 2001), 94, 95, 162, 247. (Thanks to Susan
Squier, who told me about this novel). Emphasis mine except for the word “looked.” In an April 22,
2001 review, “A Missed Opportunity to Translate Life Into Art,” in The Chicago Tribune, Danielle
Svetcov wrote, “readers learn far too much about the torments of ulcerative colitis. The editors at
Putnam should have insisted on a different disease, something less scatological, perhaps.” Svetcov’s
use of the words “indelicate” and “nasty” elsewhere in the review drive home my point about the
stigma attached to diseases of the excretory organs.
In the end, I decided to be candid about the nature and severity of my illness
in my application for the Institute, and I discussed this decision with the two
colleagues who had agreed to write the requisite letters of recommendation for
my application packet. Both colleagues knew of my illness in its milder as well
as meaner forms and, separately, both colleagues expressed concern that the codirectors of the Institute might think me too sick to participate. Because my illness
has only rarely prevented me from fulfilling any of my professional duties, my
colleagues assured me that they would address this issue in the letters they wrote
on my behalf. Simply put, they could vouch for my normalcy and productivity.12
My decision to come out probably enhanced the odds of my being selected
as a Fellow for this particular Institute, but I was also fortunate to be able to
come out while I was seemingly normal. As in my case, coming out is often
easier when one is able to do so “in the abstract”—that is, when one’s disease is
well-managed and does not significantly compromise her personal or professional
life. “Disruptiveness,” or “the extent to which a particular stigma interferes with
a person’s everyday life,” is a critical dimension of stigma and, as Crandall and
Moriarty observe, “the stigmatized will go to great lengths to prevent their stigma
from being disruptive.”13 When the degree of disruptiveness is low, so is the threat
of stigmatization; a person can more safely admit to having a debilitating disease
because she does not actually appear disabled.
Even for a person who willingly chooses to come out with illness, however, it
is not a one-time confession but, rather, an on-going process. Being accepted to the
Institute was only the beginning of many decisions about whether to come out—
both within our community of Fellows who lived and worked together on a daily
basis and within the larger and more exclusively professional community of the
clinical setting. I now grappled with whether and to what extent I would come out
in each new group I joined. Since our living accommodations were suites of four
bedrooms and one bath, I wondered how I would manage a bathroom schedule.
I had to speak candidly about this concern to Anne immediately after I had been
accepted, and I feared that she would regret having selected me, that I would be
a “bother.” As it turned out, there were several Fellows with special needs, and
Anne thoughtfully arranged (for those who requested it) the option of rooming
with fewer people. Still, I had to explain my condition to my two suitemates on
a compelling look at illness in the workplace, see Vickers, “Invisible Chronic Illness.” Citing
other studies as well, she concludes: “Capitalism is central to the western notion of success. Underpinning the essence of capitalism is the need for fully functioning individuals to provide utility
to organizations. The problem of health is intimately involved in the functioning prerequisites of
the social system—any level of illness that takes the individual below optimal capacity becomes a
problem for a functionalist society . . .. Health is regarded as a commodity, a resource, in a capitalist
structure . . . ” (242). On a related note, recently released medical records indicate that President John
F. Kennedy suffered from IBD and that his infamous back pain was the result of osteoporosis caused
by heavy steroid use. See Dallek, R. An Unfinished Life (New York: Little, Brown and Company,
2003) and the December 2002 issue of The Atlantic (vol. 290, no. 5): 49–61.
13 Crandall and Moriarty, 68.
Coming Out: Considering the Closet of Illness
the first afternoon I met them. This disclosure, especially since it was so early in
our acquaintance, came with much “covering” on my part.
As opposed to “passing,” which involves deliberate concealment, “covering”
is an attempt to “downplay a condition” or “minimize the effect of the stigmatizing
condition.”14 I assured my suitemates that while sometimes my disease required
me to have immediate access to the bathroom, it was currently well under control,
and I wouldn’t likely have to burst in on them while they were showering. Joking is another method of “covering,” and I was theatrical during this part of my
brief explanation. Furthermore, to minimize any sense of peril (another dimension
of stigma), I prefaced my entire story with an assertion that my disease is not
contagious. I wanted to reassure my suitemates that sharing a bathroom or using
the same silverware or riding in a car with me would in no way endanger their
health.15 I remember how anxious I was to put them at ease and how many ways I
had rehearsed an explanation of my situation—a process of rhetoricizing self that
is not without humor, I might add. Fortunately for me, my suitemates, Shirley Eoff
and Ernelle Fife, are most understanding and accommodating, and they handled
my disclosure with complete aplomb and tact. To make me feel less vulnerable,
they shared their own experiences with illness, which opened many opportunities
for fascinating late-night conversations—both anecdotal and theoretical—during
our month together.
Given the medical focus of this Institute and the fact that many Fellows
had mentioned personal illness experiences in the short biographies that were
distributed before we gathered in Hershey, coming out with individuals was easier
than it would have been had the setting and our goals been different. Occasionally,
a casual conversation as we walked from dinner back to the apartments would lead
naturally into some mention of personal illness. With the Fellows I knew best, I felt
entirely safe in coming out about my disease, especially when it was one-to-one.
Coming out in larger groups gave me greater pause, however.
Midway through the Institute, we participated in a problem-based learning
(PBL) exercise, similar to those given to medical students at Penn State’s College
of Medicine in their first year. After an informative introduction to the general
principles and history of PBL, we were divided into groups of six and sent away
with a facilitator who presented a hypothetical case to us. Our ultimate objective
was to come up with a differential diagnosis for this fictional patient based on
sequential disclosure of information by our facilitator. Since none of us had studied
medicine, our facilitator encouraged us to use whatever “medical” knowledge we
had, no matter how questionable, such as anecdotal evidence, personal experience
and even television shows like ER and Chicago Hope. We began by learning the
and Acorn, 245.
Susan Sontag’s observation in Illness as Metaphor (New York: Farrar, Straus, & Giroux, 1978)
“ . . . that people who have had cancer often find themselves the object of practices of decontamination
by members of their household, as if cancer . . . were an infectious disease” (60).
basic information about our “patient,” an elderly male who had been physically
active but currently presented with dizziness and extreme fatigue. We humanists
eagerly jumped in to speculate about what was wrong and which tests we needed to
order to move toward diagnosis and treatment. The facilitator said very little except
to ask probing questions; he mainly listened to us debate what constitutes legitimate
evidence. When we had gone as far as we could go with the information he had
provided, he revealed additional facts—the results of tests we had theoretically
ordered, for example, or further information about the patient’s lifestyle, health
Two convenient methods by which to analyze such clinical information are
by bodily “system” (VINDICATE: vascular, infection/inflammation, neoplasm,
degeneration/deterioration, intoxication, congenital, allergy, trauma, endocrine)
and by “mechanism” of disease (CODIERS: course, onset, duration, intensity,
exacerbation, relief, associated systems). Given this man’s symptoms and his age,
we immediately postulated cardiac disease. But as we discovered the test results
and what the numbers meant (our facilitator interpreted this data for us), we realized
that our patient’s heart was fine. We next moved to a neurological disorder, but
that also proved inconsistent with lab findings.
At about the eighth stage of information disclosure, we learned that the patient
had mentioned “black stools.” I knew immediately that our patient had colon cancer
and, in my excitement, blurted out the diagnosis. Our facilitator affirmed that this
was correct and asked why I would conclude that and why the blood was black
instead of red. I zipped off a quick explanation of the symptoms of colon cancer (I
know these quite well, given my extensive reading about IBD, which predisposes
me to a higher risk of colon cancer) and explained that the cancer was probably
located in the transverse or ascending colon since the blood was black, which meant
that it was “old,” de-oxygenated blood. If the tumor had been in the descending
(left-sided) colon, the blood would likely have been brighter red.
I was so caught up in the moment and so pleased to have guessed the right
answer that I realized only in the middle of my effusive explanation that surely
everyone would wonder why I knew so much about this disease. I had almost
“outed” myself publically without intending to. One of the Fellows asked, “How
do you know so much about this?” and I had a moment of anxiety, since I didn’t
know these five colleagues very well. Fortunately, we were all excited about the
PBL process, and everyone began talking at once about the lines of our reasoning
and how misleading initial symptoms can be. I was able to get off the hook by
simply saying something vague, such as, “Oh, I’ve read a lot about colon cancer.”
The moments of coming out (or not) that I’ve described so far illustrate Kathy
Charmaz’s distinction between “protective” and “spontaneous” disclosing.16 In
carefully deciding how I would present my illness experience to Anne and Susan
Charmaz, Good Days, Bad Days: The Self in Chronic Illness and Time (New Brunswick, NJ:
Rutgers University Press, 1991).
Coming Out: Considering the Closet of Illness
before they had ever met me, to Anne as she was determining living accommodations and to my suitemates after we’d just learned that we would be living together,
I was engaging in protective disclosure. I was in complete control, at least initially,
of when and how I would tell my story and which details I would include. On the
other hand, in the problem-based learning group, I almost spontaneously disclosed
my identity as a person with Inflammatory Bowel Disease. Spontaneous disclosure
is often emotional and is typically related to shock and disbelief as, for example,
when someone learns of a bad diagnosis on the telephone and blurts it out to those
around him.17 In my case, it was the excitement of understanding something that
no one else in the group understood in the same way. Although my disease gave
me knowledge that helped us arrive at a differential diagnosis, coming out at that
moment would not have benefited me or anyone else in the group at that time. If,
however, we had had more time to pursue further tests or design treatment protocols for our hypothetical patient, coming out would likely have been desirable in
that it would have given me credibility as an “authority” of sorts in our group of
people with no training in healthcare.
It is true that if I had come out during that PBL session, I might have spared
myself some subsequent anger, frustration and offense. Four days later, two of
our guest speakers asked us to participate in an exercise designed to illustrate
“performance as epistemology,” or what one learns when s/he performs. Again,
we were divided into small groups and given short vignettes about illness that we
were to prepare overnight for “performance” the next morning. We were given
no objectives or directions; apparently, this was crucial to the effectiveness of
the exercise. It was only after we had performed that the guest speakers briefly
discussed how performance—of whatever quality—potentially opens up textual
gaps in a way that reading cannot do. Performing a situation is different from
thinking about it: the performers who embody the knowledge experience it in
a new way, just as the audience members who watch a performance experience
knowledge in a new way. Even when an actor’s methodology is not altogether
intentional, valuable insights can be revealed. Theoretically at least, the quality of
the interpretation does not depend on the knowledge or skill of the performer.18
The timing of this event is important to an understanding of what transpired.
We were finishing our second week of intense immersion in the theory and clinical
reality of medicine. In addition to the discussions and simulations we were having
every afternoon among ourselves, we were also participating in clinical activities
with physicians and nurses throughout the morning. Consequently, we were witnessing things many of us had never encountered, some of which were especially
challenging to process—end-of-life case conferences, rounding with physicians
in various intensive care units, talking with patients and, in some cases, observing
Joachim and Acorn, 246.
more information on performance as epistemology, see Victor Turner, The Anthropology of
Performance (New York: PAJ Publications, 1986).