Speaking into Silence: Adolescent Illness Narrative

Amy Ryder discusses the lack of age-appropriate books and spaces for ill teens, and the flourishing of adolescent-authored illness narratives online

During my time working for Wallace & Gromit’s Grand Appeal, the Bristol Children’s Hospital Charity, we were involved in funding a new adolescent unit with the Teenage Cancer Trust. When I first visited what is now the Apollo 35 ward, it was immediately apparent that this was to be a completely different environment to the rest of the children’s hospital. Every space and detail, from the lounges and snugs to the requisite inputs and outputs allowing patients to charge their phone, use their computer,  connect to consoles and stream to screens from their bedside (even simultaneously), felt entirely oriented to the social and connective needs of young people in hospital. It felt so different from the childlike vibrancy of the children’s hospital and the alienating spaces of general hospital environments. I had never been anywhere quite like it.

However, despite evidence that age-appropriate wards designed specifically for teenagers can make an “important difference” for young people, nationwide there are very few facilities like the Apollo 35 ward (Viner 2007; Hagell, Coleman & Brooks 2015, 141).[1] [2] In their 2016 report, the Care Quality Commission reported that among patients aged 12-15, only 10% were treated on teenage/adolescent wards, despite an earlier study reporting that 62% of young people would prefer their treatment to take place on teenage/adolescent wards (CQC 2017; Hagell, Coleman & Brooks 2015, 142).[3] My sense of the novelty of Apollo 35 therefore was not misplaced: there is a defined need and desire for adolescent hospital spaces that the physical environments of our hospitals are yet to fully accommodate.

As part of the arts and education programmes our charity funded for the hospital, we were then asked to provide some books for the ward that might support its patients throughout their stay in hospital. The children’s hospital was already well-stocked with a wide variety of books and literary resources designed to educate, represent and reassure young children throughout their illness and hospital experiences. However, despite the many documented benefits of the wealth of such texts available to younger children, we discovered a distinct dwindling of equivalent books written for the child aging into adolescence. As such, the lack of age-appropriate physical spaces for teenagers in hospital appeared to be reflected in a similar lack of appropriate literary texts and resources for young people experiencing illness.

However, what became apparent as I began my research in this area is that young people have already identified this lack and are filling it by writing, creating and sharing their stories and experiences of living as teenagers with illness. Teenagers are blogging, tweeting, Instagramming, TikToking and YouTubing their stories and filling digital space with vast, interactive communities of support and education around their own illness narratives. Admittedly a capacious term, definitions of ‘illness narrative’ from within the medical humanities generally constellate around the idea that they “edify us about how life problems are created, controlled and made meaningful” (Kleinman 1988, xiii).[4] Existing research into youth blogging, for example Linda Nesby and Anita Salamonsen’s (2016) study of bloggers Alice Pyne and Regine Stokke, confirms how sharing adolescent-authored illness narrative online can be seen as such an act of “meaning and healing” (50).[5] However, Nesby & Salamonsen (2016) also emphasise the potential of the “open access public self-expression” of digital illness narrative as a “new form of social agency” for young people (49). Noting the idea that pathography can provide a form of empowerment for marginalised groups, they describe how online illness narratives can create technologically mediated outlets for the sense of agency that results from the ‘reconstructive’ process of creating narrative from within the deconstructive and chaotic experience of illness (Hunsaker Hawkins 1999).[6]

The fact that adolescent-authored illness narratives flourish in the digital context is unsurprising, as the e-health environment is particularly conducive to cultivating and sustaining illness narrative from groups traditionally subject to cultural and clinical marginalisation. While illness narrative more generally is regarded as “particularly accessible for marginalised individuals”, e-health spaces have the potential to be even more transformative for adolescents as they are for adults (Couser 1997, 4).[7] This is because young, ill people experience a double disadvantage in traditional medical spaces: in addition to the wider “unequal power relations with adults” young people experience culturally, Biglino et al. (2019) observe that “more so than in adult care, the relationship between paediatric patients and clinicians is asymmetrical in both knowledge and power” (75; Punch 2002, 323).[8] [9] However, in e-health environments this relationship is renegotiated, relocating the locus of power from traditional figures of clinical authority to the e-patient themselves. The expertise and experience of the patient – not the doctor – is what is central to e-health environments. This represents the huge potential for e-health spaces to host and nurture those adolescent experiences of illness through which traditional modes of clinical expression and agency can be technologically transformed.

In his illness narrative At the Will of the Body (1991), Arthur Frank found himself writing “for the times I had to remain silent and for those who are still silent” (114).[10] The historical lack of traditional texts and the continuing need for appropriate clinical environments for adolescents is testament to the silence that surrounds the medical, social and literary needs of this demographic. However, technology has given young people an opportunity to speak up from the silence Frank alludes to. Rather than remain dependent on the aetonormative systems that have heretofore failed to provide adequately for them, young people are claiming authority not traditionally afforded to them by sharing their stories and experiences of illness online. While I had been concerned with a lack of books written for teenagers, these adolescent-authored illness narratives question the ability, and indeed the suitability, of adults to step into the role we are accustomed to playing as creators, providers and gatekeepers of traditional literary resources. The same sense of excitement and potential I felt as I stepped into Apollo 35 runs through my readings of these innovative texts, which attest to the ability of those teenagers who create and share their illness narrative online to speak into this silence for themselves.

 

Amy Ryder (@amytrrr) is a MEd student at the Centre for Research in Children’s Literature at Cambridge at the Faculty of Education, University of Cambridge. Her current research explores constructions of cancer narratives in digital adolescent illness narratives and traditional YA fiction.

 

References

[1] Viner R. 2007. “Do adolescent inpatient wards make a difference? Findings from a National Young Patient Survey.” Pediatrics, 120, 749-755.

[2] Hagell, A., Coleman, J. and Brooks, F. 2015. Key Data on Adolescence 2015.  London: Association for Young People’s Health. http://www.youngpeopleshealth.org.uk/wp-content/uploads/2015/09/KeyData2015.pdf

[3] Care Quality Commission. 2016 Children and young people’s inpatient and day case survey: Statistical release. Newcastle: CQC, 2017. Accessed June 3, 2020. https://www.cqc.org.uk/sites/default/files/20171128_cyp16_statisticalrelease.pdf

[4] Kleinman, A. 1988. The Illness Narratives: Suffering, Healing and the Human Condition. Oxford: Oxford University Press.

[5] Nesby, L. & Salamonsen, A. 2016. “Youth blogging and serious illness.” Medical Humanities, 42, 46-51. doi:10.1136/medhum-2015-010723

[6] Hawkins AH. 1999. Reconstructing Illness: Studies in Pathography. West Lafayette, IN: Purdue University Press.

[7] Couser, GT. 1997. Recovering Bodies: Illness, Disability, and Life Writing. Wisconsin: University of Wisconsin Press.

[8] Biglino, G., Bucciarelli-Ducci, C., Caputo, M., Carel, H., Hurwitz, B., Layton, S., Stretton-Downes, J., Tiwari, N., Wray, J., Vaccarella, M. 2019. “Towards a narrative cardiology: exploring, holding and re-presenting narratives of heart disease.” Cardiovascular Diagnosis and Theory, 9 (1), 73-77.

[9] Punch, S. 2002. “Research with Children: The Same or Different from Research with Adults?” Childhood 9: 321–41.

[10] Frank, A. W. 1991. At the Will of the Body. New York: Houghton Mifflin.

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