We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
This article was originally published in winter 2005 Home & Away issue.
Back when my friends were devouring stories about the perfect blond, blue-eyed twins of Sweet Valley High, I was immersed in the glamorous, tragic world of the terminally ill teen. Throughout my sixth-grade year, I derived great pleasure from reading book after book detailing the diagnosis, treatment, and occasional recovery of beautiful and/or popular adolescent girls suffering from a variety of disorders and diseases: they were my entree into the world of teen genre fiction. By the time I was in seventh grade, I’d been diagnosed with Type 1 diabetes.
I’d stopped reading the novels months before experienced my own illness trauma-moment and had more or less given up hope of becoming popular or beautiful I’d all but forgotten my old fascination until last winter, when I stumbled across a whole bookstore shelf of titles that reminded me of my old favorites.
I remember little about my transition from healthy to chronically ill teenager, but as an adult I began to wonder how these books might have informed the way I felt about my diagnosis, hospitalization, status as a sick person, and gender identity. So, I bought a stack of young-adult books by prolific “inspirational novelists Elizabeth Benning (the name under which several books have been ghostwritten) and Lurlene McDaniel and started reading. What I found was both amusing and disconcerting. The books’ metaphor-laden, sentimentally charged stylistic flourishes were funnier than touching (though I imagine that a drama-starved 12-year-old on the verge of adolescent angst might feel differently). Several of the genre’s more dramatic plots focus on the process by which a girl is forced to face the reality of her illness, engages in recovery through her ambivalent relationships with other sick teens, and ultimately figures out how to “come out” to the “normal” kids and gain acceptance even though she’s marked as different.
This is a narrative that holds appeal for any reader who sees herself as an outsider and is looking for a way to become a regular teen girl. In addition, these novels represent girls’ experiences of illness in ways that affirm some of the most insidious dominant cultural ideas we have about sick people: They are consistently portrayed as objects for both our inspiration and our pity, narcissistic and/or deceitful figures to be constantly inspected and surveilled, tragic figures, innocent victims, and vehicles for others’ emotional growth and sentimental education. I did the bulk of my illness genre reading in the late 1980s, but the books in question—especially those by Lurlene McDaniel—remain very popular, and new ones continue to be published today. If a reader wants to move on from a preliminary encounter with novels like McDaniel’s and Benning’s to find books that treat illness in a more complex and contextualized way, there are a few, by established.
Award-winning YA authors like Lois Lowry, Lean Ferris, and Sally Warner. In light of the ongoing popularity of the genre, we might consider how the books—both the “good” literary ones and the “bad” trashy ones—function for their readers, and why they are so appealing, especially to a readership of preteen girls. And, more important what do they teach their readers about illness and the desirability of a “normal” (read: straight, white, healthy, middle-class) teen girlhood?
With titles like Too Young to Die, Six Months to Live, All the Days of Her Life. Please Don’t Die, A Season for Goodbye, When Happily Ever After Ends, The Dying of the Light, Life Without Alice, and My Sister, My Sorrow, it’s easy to see how Benning’s and McDaniel’s novels might appeal to the drama-seeking preteen girl. The titles promise tragedy. The covers suggest intense emotional moments: Some feature girls alone, looking wistful (perhaps contemplating their mortality); others show groups of girls (who have, perhaps, bonded while in a hospice facility); and several depict a girl looking sideways at an older boy, who’s reaching out to touch her shoulder. The cover girls are almost always white, thin, long-haired, and a bit baby-faced. Their high-waisted jeans, scrunchies, and headbands mark them as products of the ’80s and early ’90s. They’re all pretty, but not gorgeous or California-cool like the Sweet Valley High twins—instead, they’re average.
They are unmarked by their illnesses, so there’s no physical difference to bar identification between healthy reader and ill character. The covers, then render illness invisible while simultaneously reinforcing our cultural imagination of tragically beautiful illness as the province of vulnerable white female bodies. The content of many of the serial novels is stylistically marked (and sometimes dated) by an extensive attention to superficial and technical details. The twin sisters in Benning’s Life Without Alice (1993) go out for cheerleading and gain spots in the school’s most exclusive clique.
What do they teach their readers about illness and the desirability of a “normal” (read: straight, white, healthy, middle-class) teen girlhood?
The girls in her The Dying of the Light (also 1993) have a tremendous flair for late-’80s fashion; while well-off Suzanne amasses “new clothes like Imelda Marcos stockpiled shoes” and makes her party debut in a “drop-dead peach sundress” and “gorgeous sandals,” her working-class best friend Jess wears the outfit that gets the best reaction from the crowd (and seals the deal on the novel’s romanticization of the working class):
“She’d taken that fuchsia cotton tank top from Trager’s and stitched dozens of sparkling buttons of a different shapes and sizes along the neckline. With a few diaphanous scarves floating around her shoulders, and a sarong skirt fashioned out of what [Suzanne] recognized as a stray bolt of curtain fabric from Sew What?… she looked like the hippest gypsy you’ve ever seen.”
As this passage suggests, illness novels (like other YA novels for girls) emphasize the importance of protocols of femininity, which must be followed regardless of whether one is sick or well. In McDaniel’s Six Months to Live (1985), for example, the central characters do each other’s makeup while in the hospital, and, when urged to fight cancer through “imaging” techniques, tum the doctor’s masculinist and militaristic rhetoric (“gathering forces,” “attacking,” “beating up,” and “turning your own bodily defenses against the invader”) into something more appropriate for girly patients. Protagonist Dawn Rochelle’s response: “I’d draw a picture of an army of teddy bears charging out to fight these green, gloppy-looking blobs. My teddy bears would be riding white horses and carrying long lances like the knights of the Round Table.”
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Along with protagonists defined by fashion choices, extracurricular activities, hair type, and parental occupation, the McDaniel and Benning novels are populated by stock characters like the cute and charming terminally ill child; the amputee/cancer survivor potential boyfriend; the strong, attentive older brother; the “normal” guy at school who serves as crush object but is often a jerk; the father who can’t accept his daughter’s illness; and hospital staff with accents or personality quirks (an Irish brogue, a tendency toward clumsiness, extreme perkiness).
While she tends to over rely on stock characters, McDaniel in particular provides a detailed representation of illness, complete with accurate information about symptoms and treatments (this is the sort of writing that had me feeling pretty knowledgeable about the warning signs of anorexia, bulimia, and leukemia by the time I was 12)—and it costs the novels any space for in-depth emotional narrative. After reading Six Months to Live, in which young Dawn Rochelle is diagnosed with acute lymphocytic leukemia, I knew trouble was brewing as I began McDaniel’s 1989 novel Too Young to Die and detected the same telltale symptoms in protagonist Melissa—sure enough, she ends up with the same diagnosis.
McDaniel combines her fondness for medical terminology with a penchant for sensational description that sometimes borders on the grotesque.
In the opening chapter of 1994’s All the Days of Her Life, McDaniel describes what is usually a routine and relatively painless procedure for Type 1 diabetics:
“[Lacey] threw away the syringe filled with her morning dose of long-acting insulin and drew up a syringe of regular—short-acting—insulin. She reminded herself that too much would carry the risk of a reaction. And too little wouldn’t solve her problem. With a wince, Lacey inserted the short needle into the fleshy part of her abdomen. She pushed down the plunger, and as the insulin flowed into her, it burned. She withdrew the needle, pressed the site with an antiseptic-drenched cotton ball, and waited for the burning to cease.”
In one short passage, McDaniel manages to demonstrate her own expertise (she’s done her research and assisted her diabetic son with his own injections), exoticize the experience of living with Type 1 diabetes (look at this strange, painful regimen!), and make the disease itself seem like a terrible, repulsive burden. While most diabetics probably don’t think of the illness as something we love living with, McDaniel makes it seem torturous. The titillating representation of the injection moment conforms to dominant (in my junior high school, at least) preteen understandings of the diabetic routine, which were various combinations of “Eeeew, gross!,” followed by “Wow, you must be really brave.” For the non-ill reader, this double move renders the ill person as distinct from her and simultaneously allows her to feel like a caring person by substituting pity for initial repulsion.
This moment also reaffirms the ill person as a source of our own inspiration; in a perverse way, she becomes someone to idolize through her illness, but because it’s set up by a moment of visceral alienation, this idolization doesn’t come with social acceptance or recognition.
Just as their cover girls are more or less indistinguishable and their pages populated with stock characters, the plots that drive McDaniel’s and Benning’s novels are formulaic: Typically, mysterious symptoms lead to diagnosis, which leads to denial and angst, which ultimately leads to either acceptance and cure or acceptance and death. While a book occasionally focuses on a disability rather than an illness the condition is generally contextualized as the effect of an illness (for example, blindness resulting from a form of retinitis). After all, there’s a great deal of dramatic potential in newly diagnosed (and terminal) illness that’s just not available to the disabled (or the already sick, for that matter). Cure, remission, and rehabilitation provide the happy ending and death the sad one.
The novels’ focus on illness is a narrative requirement if a character is already visibly affected by her malady, then the frequently penned plot focusing on the ill character passing as healthy just wouldn’t work. There could be no dramatic loss of social status, beauty, romantic possibility, or scholastic opportunity—i.e., no story—if the sick girl were already marked as different. In Benning’s The Dying of the Light, for example, the protagonist’s best friend hides her blindness from everyone around her, refusing to acknowledge any visual impairment until she gets hit by a car. McDaniel’s All the Days of Her Life features a girl who keeps her diabetes a secret until, after too many missed injections and a big ice-cream sundae, she develops diabetic ketoacidosis and slips into a coma.
The narrative arc teaches readers a series of valuable lessons: 1) hiding your difference in order to fit in is bad, especially if you’re already considered superior in some aspects to your healthy, normal best friend; 2) if you do, you will be punished, and your secret will be out; 3) and only then will you come to terms with your illness and recognize your difference; 4) but remember, you don’t want to be too different (these books are aligned with, not against, the conformity-above-all-else world of high school. after all); 5) so it’s important to still care about having a boyfriend, fitting in at school, and maintaining equally significant friendships with both your sick and not-sick pals.
And, on top of all that, you now have to win back everyone’s trust and recognition because you were deceitful. The sign that you’ve accomplished these tasks? In The Dying of the Light, that would be returning to your artistic practice at the urging of your non-impaired friends, and creating a masterwork that highlights the beauty of the best friend who told you that you should’ve gotten your eyes checked before you were hit by a car.
The more literary and nuanced novels by Lois Lowry, Sally Warner, and Jean Ferris don’t rely on the narrative tension provided by an ill character in need of social redemption. This may be in part because in two of the three books, the sick character dies—so redemption is out of the question. But there’s more to it than that. Lowry’s A Summer to Die (I977) is a good example: While Molly, the terminally ill sister of main character Meg, is represented as a very specific type of typical teen at the start of the book (a cheerleader with a varsity-athlete boyfriend and aspirations for marriage and family), she doesn’t fight to stay “normal” as her illness progresses. Instead, she, like Meg, befriends the elderly man who owns the farm property on which their family lives, strikes up a friendship with the hippie couple who live next door, and develops an interest in the local flora.
This character development allows Molly to confront her illness and surround herself with a network of loving friends who value and nurture her individuality. It’s significant that teen illness stories are rarely, if ever, narrated by the sick girl herself. McDaniel, for instance, writes mostly in the third person, which allows readers to access the emotional responses—however trite and melodramatic—of all major characters. It also prevents direct identification and places readers in a perfect position to pass judgment on characters and use them as vessels through which we experience our desired emotions, including pity, sadness, and inspiration.
First-person narration by a healthy best friend or sister is also a popular choice; at least two of the Benning books Warner’s Sort of Forever (I998), and Lowry’s A Summer to Die use it. When we’re given first-person access to the ill subject—via either descriptions of her emotional life or the narration of a friend or sister close to her—we gain what we can imagine is direct access to the experience of illness without having to actually imagine ourselves as ill or disabled. But the access isn’t direct at all: it allows us to pretend we’re empathetic without having to know much about the sick girl’s perspective on anything but her illness-and possibly her extracurricular activities, appearance, and current crush.
The depiction of a loved one’s illness as a process through which the protagonist comes to know herself, learn a life lesson, and recognize herself as a beautiful person is a quality that generic teen illness novels share with their literary counterparts. In Lowry’s A Summer to Die, Molly’s illness is represented through the emotional experience of Meg, who survives her; in Warner’s Sort of Forever, the survivor is a best friend. This one-step-removed structure may make the novels more valuable to preteens’ emotional educations: it helps that Lowry and Warner forgo the medicalization and sensational description that McDaniel is so fond of. In their books, the sick girl is more a character than an object of perverse or grotesque fascination.
Ferris, Lowry, and Warner situate the experience of illness in the larger contexts of familial relationships and environments, further grounding their characters within specific, detailed neighborhoods. Because they develop their characters’ emotional lives—rather than speeding readers through an event-oriented plot in which facile lessons are learned, and a series of generic sentimental emotional moments are achieved—Lowry’s, Ferris’s, and Warner’s books can elicit an emotional response from readers that’s far more complex than that elicited by McDaniel and Benning.
In Warner’s Sort of Forever, healthy-character Cady must negotiate her desire to nurture her dying friend Nana while also being a responsible, caring older sister. Her parents are understandably more worried about Cady’s devotion to Nana than they are about her responsibilities to her sisterly duties. This tension between Cady’s two areas of responsibility—to the family and to the transitioning friendship—adds to the complexity of her experience while it contributes to the exploration of Cady’s grief about her best friend’s terminal illness. Warner’s focus on the spaces of home, school, neighborhood, and best friend’s house likely resonates with those spaces occupied by her preteen readers, who are unlikely to be going out on dates, to unsupervised parties, or to any of the other social spaces occupied by McDaniel’s and Benning’s characters.
In Ferris’s Invincible Summer (1987), central characters Robin and Rick are fleshed out through their relationship to their families’ farmland, the changing seasons (around which the novel is structured. though not in a gimmicky way), and the particularities of developing a romantic relationship in an urban hospital and continuing it between two rural communities. Because both protagonists have leukemia, Ferris avoids placing them in the normal/sick relationship dynamic so common to this genre; instead, she explores ways in which experiences differ from person to person, and, significantly, refuses to make illness the province of the female body.
Summer also embraces complications and nuance in the emotional aftermath of surviving illness, as the character who lives must come to terms with the loss of a friend, and the character who loses a friend is also a survivor of illness. I’ll never know to what extent I internalized the messages of the illness novels I read as a 12-year-old. I can’t, for example, establish a causal relationship between reading about anorexia and my adolescent enactment of self-harming attempts at bodily control, nor would I necessarily connect my desire for belonging via beauty, popularity, and designer jeans with the novels I read. Nevertheless, these narratives’ tendency to reinforce our existing perceptions of illness is troubling. Even if books like McDaniel’s are going out of vogue (as a YA librarian recently opined), it’s difficult to know if their replacements will be much better.
I was excited to hear about Pete Hautman’s Sweetblood (2003), a popular YA novel about Lucy Szabo, a diabetic 16-year-old who gets involved in an online vampire scene and theories some fantastic connections between vampirism and her illness. This sounded like the perfect antidote to the McDaniel books, what with a protagonist who strives for anything but normalcy. In my diabetic readerly fantasy, the novel would go something like this: Teen girl has diabetes, finds helpful analogy in vampire lore, hooks up with local teens in goth subculture, and makes friends who help her get used to her illness, while also getting to explore and affirm a teen identity outside the cheerleader norm.
Sweetblood almost delivers.
Hautman employs a disappointingly familiar narrative arc: Diabetic girl thinks she’s invincible, makes new friends and doesn’t want illness to get in the way, neglects her diabetes-management responsibilities, and is punished for her negligence by going into diabetic ketoacidosis after drinking one too many at a local goth party. However, he rejects a few generic tropes by ensuring that Lucy remains in an antagonistic relationship with the novel’s “good,” perfectly controlled, happily diabetic character, even after her ketoacidosis moment—a sign that the novel will deal with the sometimes-messy contingencies that are a part of living with diabetes.
Through a conversation with a local tattoo artist. Lucy realizes that she doesn’t need to abandon or be ashamed of her past choices (especially her involvement in goth culture), and that she can make the choice to move on, having grown wiser from where she’s been. So even though by book’s end Lucy has returned her black-dyed hair to its original corn-silk blond and gone back to hanging out with her “normal” jock friend Mark. She does these things with a buzz cut and the understanding that she can be herself—diabetic, goth, “normal,” or whatever else she wants to be.
If the next generation of teen illness novels are similar to Sweetblood, there’s hope for those of us who want something more than formula from them. If, like Sweetblood, they provide us with protagonists who question or challenge the protocols of adolescent, feminine, or able-bodied normalcy, and who resist their identification as tragic, while also negotiating the difficulties of living with illness their teen readers might understand illness in a much more complex and interesting way than that suggested by McDaniel and company.