It’s like a black woman’s Charlie Brown moment: An autoethnography of being diagnosed with lupus

I’ve developed a new philosophy—I only dread one day at a time

I was so nervous about this doctor’s appointment. I knew that today I would be receiving the results from my blood test. While sitting in the waiting room, I wondered what the doctor would tell me. Amid a sea of empty seats, I thought about the grim statistics regarding Black women’s health. Giscombe (2010) reminds me that “African American women experience disproportionate high rates of adverse health conditions, including cardiovascular disease, obesity, lupus, adverse birth outcomes, and untreated or mistreated psychological conditions” (p. 668). This thought occupied my mind, so much so that I didn’t hear the nurse as she called my name to see the doctor next.

It seem like it took forever to get to room one. Once inside, I could never really get settled. I didn’t even rest my belongings down. I held them in the chair as I waited for the doctor to enter. As she approached, I put on an appropriately fake smile, just to give the illusion of happiness. She inquired about my health, remembering that I had complained of extreme fatigue, muscle inflammation, and joint pain. I told her I was okay, hoping that a quick response would speed this process up.

She sat at the table and began pouring over my blood test results. She commented on how good my thyroid looks. She tells me to work on improving my Vitamin D. She advises me to drop a couple of pounds to decrease chances of developing other conditions. Fine. No problem! I can do this. As our session came to an end, she leaned forward and says that she remembered that there was something else she needed to talk with me about. She pulls up her laptop, gives the mouse a couple of jolts, and says, “Lupus. That’s what I need to talk to you about. You tested positive for it. You have a positive anti-nuclear antibody.”

Huh? What? Her mouth is moving, but no words seem to be coming out. It’s as if I am trapped in Charlie Brown’s classroom, listening to the “wah wah” voice of Miss Othmar. Only, this time, I don’t understand what she is saying. Is she speaking English? Her native language? Or am I suddenly deaf? All I remember next is walking home from the doctor’s appointment. But the doctor must have told me that I had lupus. She must have informed me that all of those symptoms, coupled with the positive anti-nuclear antibody, meant that I had a lupus diagnosis. But why didn’t I hear her? Was she whispering? Or maybe I must have simply ignored her when she said that I needed to see a rheumatologist for extensive testing. Why was she speaking so softly? Speak louder! Yell the words to me so that I understand. Scream that I have lupus. She didn’t shout it, so I guess I didn’t hear it.

I only heard my heartbeat. Faster, and faster, and then faster. At times, it seemed to skip a beat. At others, it totally stopped. I heard the voice in my head that told me she was wrong. I heard my body stoop over like a sack of wet laundry. I heard horns honking, phones ringing, the clicking sound of a woman’s heels, the slight cry of a newborn baby, the murmur of voices, a curious cricket stuck in the doorway. I heard all of this, but her voice created noise. Her voice loomed over me, attempting to make way through all the other sights and sounds. She competed for my attention, trying desperately to relay this important information. Yet, she spoke the words I could not hear. And as long as I could not hear her, she was not speaking.

Maybe it was the walk home that made me finally listen to the doctor’s words. I held my emotions together long enough to make it into the front door. Once inside, I cried and cried, but not exactly about the lupus diagnosis. I felt as though I had been losing for so long and that I had just begun to come into my own. Many years spent as a student caused my life to move in slow motion. I hadn’t accrued much wealth, nor did I own a house or a car. I moved around so much that I barely had the same address more than 2 years. When the lupus diagnosis came, I was just beginning to see some of the beauty of life. I was now an assistant professor, which afforded me a comfortable lifestyle. But now, like Charlie Brown would say, “For one brief moment today I thought I was winning in the game of life. But there was a flag on the play.” I cried for the unattained possibilities.

And how would I tell my family? I had barely even heard of lupus myself. I remember one friend in college who would have “flares” that would cause a huge rash across her face. But I never deeply inquired about her illness. It was unimportant. Now looking back, I wish I had someone yelling at me about lupus: “Look out for lupus: a mysterious disease that disproportionally affects Black women of childbearing age” (Davis and Gregory, 1992: 40). Or maybe a billboard could magically appear with the words:

People of all races may get lupus, but prevalence, incidence, and mortality rates of the disease are three times higher in black women than in white women. (National Institute of Arthritis and Musculoskeletal and Skin Diseases, 1992: 238)

But who reads billboards anymore? It would probably take a television infomercial on lupus for me to understand it. The symptoms would appear suddenly in the scrolling text running from left to right across the bottom of the screen:

extreme fatigue, weight change, rashes, renal disease, headaches, depression, joint pain, aches

Presented through a slew of paid actors and actresses, one woman would stick out. She’d be about my age, young, vibrant, and full of life. Right as I would grab the remote to turn the station, she would appear sitting on a doctor’s table. The doctor would turn toward the screen and begin an explanation of lupus. But it is her that I would be watching. I would see her demeanor change as the doctor talks about living a full life with lupus and how lupus can be controlled with medication. A quick cut to a change of scenery would show her with a smile as she engages with friends at lunch, practices yoga in the park, and catches the latest movie. In her, I would see how she dealt with being diagnosed and how she lives with lupus. But I hadn’t seen anything on television like this, not even a celebrity claim of the disease, aside from Toni Braxton, who curiously is a spokesperson for childhood autism and not lupus. I didn’t even know another famous person with lupus, which is a bit odd, considering that it is “widespread and affects 1.5 million Americans. [It] is more prevalent than cerebral palsy, multiple sclerosis, sickle cell anemia, and cystic fibrosis” (Auerbach et al., 2013: 606). With staggering numbers like this, who needs another Viagra commercial when something as serious as this exist? But, honestly, had I even seen this, I probably still wouldn’t have had a reaction.

It took me 3 weeks to contact the rheumatologist. Clearly, I was in denial. I believe I exhibited one of the characteristics that Travis et al. (2011) describe about patients suffering from denial: “They fail to accept a diagnosis or appear unaware of a diagnosis previously discussed with them” (p. 1028). Or maybe I was in what Salander and Windahl describe as avoidance, which “implies a conscious decision to deliberately avoid information” (Rabinowitz and Peirson, 2006: 71). At any rate, I am sure I presented a classic casebook study of denial when considering Weisman and Hackett’s (1961) definition of it as “the conscious or unconscious repudiation of part or all of the total available meanings of an event to allay fear, anxiety, or other unpleasant affects” (p. 232). I simply didn’t want to acknowledge lupus nor did I want to give it any attention. Aside from my husband, I told no one about this diagnosis. As far as I was concerned, I pretended that this was just a momentary interruption in my life.

My anxieties have anxieties

I didn’t know this doctor. I only went to her because my internal medicine doctor recommended her. Not knowing her seemed to create more anxiety for me. I didn’t worry about her bedside manner or her ability to examine me. Nor was I concerned with her fee. It sounds crazy, but I worried about how she would view me. In fact, I’d rather she know that I had a doctorate than a positive anti-nuclear antibody. In my mind, knowing that I was educated would guarantee me a certain level of treatment. And since this was my first time with her, I signed “Dr.” on everything—all forms, all insurance information, Health Insurance Portability and Accountability Act (HIPAA) acknowledgments, and so on. Nothing was turned in without my stamp of approval.

Why did it matter? It mattered because I am well aware of the stereotypical versions of Black women that exist in larger society. West (2012) writes, “In addition to caregiving Mammies, African American women are often portrayed as sexually irresponsible, promiscuous Jezebels and as angry, combative Sapphires” (p. 288). And because of the prevalence and popularity of these images, they have come to dictate what people know about Black women. hooks (1995) writes, “Stereotypes are created to serve as substitutions, standing in for what is real” (p. 38). My fear is that the rheumatologist will see the stereotype, or substitute, instead of me, the real. This is why stereotypes are so dangerous, for they “do not merely tell us how a culture ‘sees’ a group of people; they also tell us how a culture controls that group, how it bullies them into submitting to or evading the representations that haunt them” (Morgan and Bennett, 2006: 490). And these images certainly haunted me. So, either I am these stereotypical images or I am not. If I am not, I have to prove it. This can be very difficult, as Boylorn (2013) shows us when she juxtaposes the stereotypes with the contradictions about Black womanhood, blending “myths and truths to show how indistinct they are made to seem” (p. 133).

In the madness of not wanting to be seen as a stereotype, I consider all the possibilities of how she may view me. The circumstances prevented me from being a matriarch, so I really wasn’t worried about that one. But I could be subjected to an amalgamation of the Sapphire–Mammy–Jezebel stereotype, in which she could possibly see me as a neck-rolling angry Black bitch, or as young and lascivious because of my appearance, or just a willing to please patient. She may view me as having a combination thereof, or as treading lightly on several tropes. This isn’t the “magnificent stereotype” that Parks (2010: 51) notes. It’s more like a magnificent monster. It is sad to note that not wanting to subscribe to a stereotype dictates my behavior, even at a doctor’s appointment. And it is even sadder to admit to myself that because I am a Black woman, I exists in a state of stereotypes, which often limits my behaviors and actions because I’m always working hard to evade the stereotypes. It is quite silly for me to even think that me having a degree and being a part of a certain class would prevent me from being stereotyped. Boylorn (2013) cautions me from embracing such an idea, writing that “while class is a factor in black women’s lives, and can sometimes be a buffer to racism and sexism, it does not offer protection from negative labeling” (p. 140). But what other recourse do I have?

So, when the rheumatologist meets me, it is just as important that she know that I have multiple degrees. For the moment, forget about the aches and pains. Don’t even mention the fatigue or tiredness. Let’s just come back to the painful, swollen joints. The dizziness does not matter. Instead, let’s talk about how I earned a doctorate in 3 years. Or how I used my travels within West Africa to supplement my degree by learning two African languages. Let’s discuss my research agenda and how I am on the fast-track to earning tenure. I wanted to stir the conversation in this direction so that she wouldn’t think I was just another average Black patient.

Now that I look back on it, I should have diagnosed myself with another illness: “stereotype threat” anxiety. If Cleopatra Abdou and Adam Fingerhut (2014) were medical doctors instead of psychology professors, they may have looked grimly at me and said, “You suffer from stereotype threat anxiety. This is a fear of being judged based on group stereotypes or of confirming negative group based stereotypes” (p. 317). Coined by Claude Steele and Joshua Aronson in 1995, stereotype threat produces a “disruptive psychological state” (Aronson et al., 2013: 50). I imagine that this is what Hamlet (2015) felt when she began a new job as a professor at a university. She hid her anger when she was referred to as a maid because she didn’t want to garner a reputation as the angry Black woman, admitting that “she willingly fell prey to becoming a victim of stereotype threat” (p. 307). Like Hamlet, I was too busy trying not to confirm a negative stereotype that I didn’t even have time to think about lupus.

And although I have no idea what this particular doctor thinks of me, I am familiar with the research that finds that “stereotypical perceptions of Black women are highly prevalent within the medical community, leading to the stress of anticipated and actual experiences of biased treatment” (Abdou and Fingerhut, 2014: 317). It’s not her fault that I am experiencing stereotype threat, as it “can occur regardless of whether or not the provider holds negative racial stereotypes or manifests racial bias” (Burgess et al., 2010: 170). Aronson et al. (2013) concur, writing, “The minority patient can feel a sense of threat without ever encountering unfair or unkind treatment” (p. 51). I wonder, is there a pill for that?

My visit with the rheumatologist was nice enough. She did all the routine stuff, evaluated my joints by examining my arms and legs. She meticulously stroked my neck, checking for lumps and discoloration. She listened to my heartbeat, checked by eyes and ears, and analyzed my knees. After I completed the task of walking across the room in a straight line, she took blood to run more extensive tests. She did all these things, but it was inquiring into my career as a professor that proved to be the most noteworthy part of the visit for me. One disorder is rectified—the stereotype threat anxiety. But what about lupus?

In the book of life, the answers aren’t in the back

Turns out, I don’t have lupus. Two rounds of testing at the rheumatologist proved that lupus is not my ailment. You would think that I would hold some type of grudge with my internal medicine doctor for leading me down this path. Can I blame her that the test she threw in “for good measure” came back positive? Should I be angry that she caused me unnecessary time spent going to a new doctor, the countless hours between scheduling appointments, arriving at said appointments by transferring between buses and trains, and not to mention the stress and anxiety of the diagnosis itself?

The answer is no. I can’t find her at fault for doing her job. In fact, I’d rather she report any suspicious finding on my blood work. Besides, “Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments” (Mayo Foundation for Medical Education and Research, 2014). Even when she received the report back from the rheumatologist, she still insisted that I needed to always get tested because lupus can develop over time.

I should actually thank her. Because of her, I changed my lifestyle. I began eating healthier. I lost a significant amount of weight and became more active. I started working on my spirituality and began using positive motivations throughout my daily life. I’m in line with Alice Walker (1979) when she says, “Illness has always been of enormous benefit to me. It might even be said that I have learned little from anything that did not in some way make me sick” (p. 370). So, what is there to be angry about?

Well, my anger derives from my insurance company, who no longer accepts my internal medicine doctor as a network provider. As such, I’ve had to change doctors, which means that I am in this very cycle again. Recently, a blood test performed by this new doctor revealed a positive anti-nuclear antibody again! What? Lupus, again?

I am back to a new rheumatologist. This means that all my anxieties are back, this time with a vengeance. Particularly with the rheumatologist who, on my first visit, laments me with his opinions and conjectures about affirmative action and the need to repeal it. He tells me of how impressed he is with my education and how much he sees me as his own daughter. All of this is wrapped within his hope and desire that I “earned” my education and hope it wasn’t “given to me through special programs.” I recall Charlie Brown after getting hit with a baseball, “I’m dying, and all I hear is insults!” Somewhere in the midst of his soapbox special on education, he informed me that I tested positive for lupus, that I have at least three symptoms of the illness, and that I needed more to officially be diagnosed with lupus. But I could barely make any of this out. I was too busy wondering which stereotype he was pandering to when he regaled me with affirmative action stories and with his bootstrap ideology.

That’s the secret of life—replace one worry with another

I’m confused. One moment I don’t have lupus, the next I do. I understand that lupus can be hard to diagnose but this is ridiculous! I have no clear answers here, my life seems to be in a state of uncertainty. I have to take Miles (2011) at her word when she writes,

Because the early symptoms of lupus can be vague and indeterminate, or resemble related conditions like rheumatoid arthritis, the diagnosis of lupus can be delayed in the United States, for example, women sometimes live in a liminal state for years, waiting for a diagnosis, often as their health deteriorates. (p. 652)

What kind of future is this that I have to wait for a disease? This is even confusing to explain. The last time I felt this confusion was when I was sitting in Mrs Seltzer’s kindergarten class excitedly coloring a picture of Little Red Riding Hood when she suddenly began to scold me and then hit me with a ruler. Through the tears that began to run down my face, I stumbled the words, “What did I do wrong?” She succinctly replied, “You colored Little Red Riding Hood black. You must not ever do that. She can’t be black.” Now here I am again, feeling lost, confused, and scared. And this time there is no black Little Red Riding Hood. There’s only me and my diagnosis of lupus.

How do I begin to even understand this situation? The few pamphlets I’ve read indicate that lupus is a woman’s disease, which means “there are gender-specific issues regarding sexuality, body image, and role strain” (Auerbach et al., 2013: 607). As I research the illness that will eventually consume me, I note the words that scare me most: hair loss. I can’t begin to imagine that the dreadlocks that I have so perfectly groomed for the last 10 years will be no more. I see the research that describes the strain that living with lupus has on the household. I re-read the same sentence over and over again: “Women worry that their children had to grow up too fast, assume too many household responsibilities, or have been altered because of the anxiety the household experienced because of the lupus flares” (Miles, 2011: 660). Now, I’m in the “village of the sick” that Stoller (2004) refers to as being unpredictable, a place that restricts possibilities and sets limitations on the lives of the sick. And I’m not sure if I want to be a resident there. I know the rules and expectations of my life will eventually change, and I will probably have to learn myself again in a new light. But I’m not there yet. I hope that lupus never becomes personified in my life, as it does for many sufferers, “the illness as a mental representation or an object” (Schattner et al., 2008: 468). I hope that I don’t exhibit the same “high vulnerability for self-reported feelings of depression and anxiety” (Auerbach et al., 2013: 607). I hope my life doesn’t resemble one of the Ecuadorian women living with lupus whose lupus caused her to lose “several years of her children’s lives and has trouble remembering them as small children” (p. 660). But what can I do?

Maybe I could portray myself as the strong Black woman, another stereotypical manifestation of Black womanhood. I could pretend that I suffer from nothing. Instead, I could boldly stare lupus in the face and shout that I won’t be its victim. That it won’t ravage my body or mind, that it won’t cause me undue burden or put me in disastrous circumstances. I would find a way of making sense of all of this without crying or worrying, without even batting an eye. I would be living, thriving, and surviving. If I could just tap into this strength that black women supposedly had from birth, I could show that lupus won’t break me. I would be different from Boylorn (2013) whose depression diagnosis caused her to question herself as a strong black woman. She writes, “I had grown up watching the women around me move mountains and shit, and there I was falling apart over a mole hill” (p. 137). No, lupus wouldn’t do this to me. But it is even more dangerous for me to assume this stereotypical position, a facade of strength will not prevent me from experiencing the symptoms of lupus. Plus, this strong Black woman concept is a myth and a dangerous one at that considering that it ignores her “emotional or physical condition” (Beauboeuf-Lafontant, 2007: 38). hooks (1989) states,

It is not that black women have not been and are not strong; it is simply that this is only a part of our story, a dimension, just as the suffering is another dimension—one that has been most unnoticed and unattended to. (pp. 152–153)

Assuming a strong Black woman position will only lead me back to a state of denial. Or did I ever truly leave it? It makes me think of Charlie Brown when he says, “When I’m lying in my bed, I think about life and I think about death. And neither one particularly appeals to me.”

I’m still hoping that yesterday will get better

My story is not a revelation about how lupus has devastated my life. It is not about how I miraculously came to see life anew from my experience of battling the disease. It will not aid in understanding how chronic illness affects a life. It does not provide some sort of rejuvenating experience that resulted in some type of higher power or spiritual healing. It is not about survival, or coping, or managing illness or disease.

Rather, I interrogate and reflect upon an experience I have undergone in all its meaning and with the embodied and raw qualities in an effort to provide privileged access to the experiential level of being diagnosed with a serious illness. Telford et al. (2006) write, “We can best understand what it means to live with chronic illness by listening carefully to the stories that participants share” (p. 458). To go further, I believe we can learn just as much by listening to the story of diagnosis.

I began by discussing the process of being diagnosed with lupus, as I wanted you to see and feel what it was like during the actual moment of diagnosis, hoping to “explore emotive topics and those which are conventionally kept private” (Chang, 2008: 50). I progressed by showing the impact of social and cultural meanings and practices that affect Black women patients. A medical professional not only treats a patient; more so, they are treating the patient in a social and cultural world that has ascribed meaning to their body. The black body, in particular,

is a body that is always on display, always on stage, and always in the process of its own exhibition … [It] is not a blank screen against which meaning gets projected. Instead, it is the core text already infused with meaning. (Young, 2003: 114)

With that being said, I sought to bring you into the emotional psyche of a Black woman to note the particular effects that race has on the mundane experience of just visiting the doctor. Through this writing, I hope you learned the ways in which race and gender frame experiences, even in the way that one is diagnosed with an illness. In true autoethnographic fashion, this essay “[breaks] the silence around understudied, hidden, and sensitive topics” (Adam et al., 2015: 41). From this experience, I find that there are no easy answers.

But there are some ways of thinking about this situation, especially when considering the psychological ramifications of this event. Even now, I’m still uncertain about the diagnosis, mainly because it’s not official yet—I actually need two more symptoms for this designation. Something like this is just going to prolong my denial, which might not be such a bad thing considering that some cases of denial actually “allay anxiety, and thus, enhance coping, [and] may be psychologically beneficial” (Rabinowitz and Peirson, 2006: 71). In fact, Travis et al. (2011) find that “denial may have self-protective functions and can be a normal temporary response to overwhelmingly stressful and disruptive situations” (p. 1028). Still, one must also consider the ways that seemingly mundane situations, like going to the doctor, can become a high stressed, anxiety laced event. Just imagine how much information I missed or just got wrong during those doctor’s appointments due to stereotype threat because it “induces arousal and anxiety, which impair cognitive performance and working memory … Minority patients [may] fail to understand and remember the content of important conversations” (Aronson et al., 2013: 52). If we are beyond race and living in a post-racial society, then we have yet to grapple with all the ugliness it has left in its ruin.

Some may wonder why I would reference a comic character to explore such a sensitive topic. They may accuse me of making light of a serious situation by drawing a whimsical connection from my real life to a fake character. Well, this is how I process this experience. I own this experience, and my relation to Charlie Brown is in fact more nuanced than might first appear. Eco (1985) finds that Charlie Brown “is like everybody else. This is why he is always on the brink of suicide or at least of nervous breakdown: because he seeks salvation through the routine formulas suggested to him by the society in which he lives” (The New York Times Book Review). On a deeper level, Charlie Brown reflects the best and worst of human nature. He shows our interactions in the world, our insecurities, our triumphs, our failures, our successes, and our desire to belong in a structured, modern society.

Others may ponder whether I would use Charlie Brown if I had a more serious illness or ailment. Well, that’s the beauty of autoethnography—they are “creatively written, detailed, local and evocative first person accounts of the relationship between personal autobiography and culture” (Grant et al., 2013: 2–4). In fact, using autoethnography to blend my experiences with Charlie Brown allows me to stand in my own truth and admit that this is my interpretation of the events. And because of the relational ethics of autoethnography, I have to consider “all the people that are implicated” (Manning and Adams, 2015: 207) in this story, which includes the doctors as well. But like the doctor’s, my intent is to do no harm. Instead, I take Manning and Adams’ (2015) suggestion seriously to construct an autoethnography that can “teach, inspire, or and/or inform” (p. 206). Hence, I hope this writing teaches us how race and gender are manifested in everyday life, inspires us to examine our own insecurities as we process information, and informs us about private experiences that would otherwise go unnoticed or unexamined.

I don’t have any fears that my words will be misconstrued. I don’t have any fears about my words being suggestive of misdiagnosing on the part of healthcare professionals. I am not even concerned with someone using my words to justify their own means or goals. Whether or not my experience replicates someone else’s is of little concern to me. Richards (2008) cautions that an illness autoethnography “could replicate the very structures they seek to destroy, reverting to inauthentic identities that others have bequeathed them” (p. 1724). Yet, I am confident that my story presents a complex reality of experience and that it retains its power by refusing to offer a quick and easy resolve. It exposes tensions, problematizes theory and culture—all by reflecting on one individual life. As the reader, you come to know yourself better, your own nuances, positions, locales, idiosyncrasies, biases, and so on. In this way, we co-create meaning. In the end, we both can end with a Good Ol’ Charlie Brown saying: “Life is like an ice cream cone … you have to learn to lick it.”