BIOLOGIC BULLDOZE
This piece responds to the discourses around traditional pharmaceutical drugs like tumor necrosis factor (TNF) blocking biologics and nonsteroidal anti-inflammatory drugs (NSAIDs) that surface on forums and within the interviews. When discussing desires to utilize holistic modes of treatment and care rather than biologics, some interviewees expressed feeling shut down by their biomedical doctors. Tensions between different schools of thought around the “best” and “correct” ways to treat AS are palpable and create a stigma attached to rejecting standard biomedical treatment found in patient-rheumatologist dynamics and on forums.
BAMBOO SPINE
When your spine fully fuses, it is referred to as a “bamboo spine.” In this piece, a person wraps their arms and legs around the foremost bamboo tree, bending and curving it into a position reminiscent of a fully fused AS spine. She clings tightly to the tree, almost becoming one with it, though the potential for the stalk to spring back exists if she were to shimmy down, indicative of a fluidity and fluctuation that comes with the embodiment of chronicity. On forums, people consistently discuss their fears for the future, their questions and concerns about what their bones might look like in a month, a few years, and decades ahead. Interviewees’ surfaced discussions about the invisible nature of their pain and stiffness as it was linked to bone fusion. Within the context of holistic healing, interviewees’ and forum participants’ conceptions of the future were constantly filtered through discussions about the kinds of treatments and modes of care they engage in.
LEAKY GUTS
An iterative, cyclical form of healing came through each interviewee’s narrative as they spoke about their holistic healing processes in relation to their leaky guts. The term “leaky gut” refers to the process by which the mucosal barrier of the gut becomes permeable to “antigens from the gut lumen,” promoting “both local and systemic immune responses” (Mu et al. 2017, 1). People with AS tend to have a leaky epithelium and endothelium due to “adherent and invading bacteria” that reside in their ileums, causing epithelial barrier changes (Ciccia et al. 2019, 1). The introduction of bacteria and zonulin into the bloodstream can lead to the autoimmunity that results in AS (Ciccia et al. 2019, 7). The gut is positioned as a dynamic, critical interlocutor, receiving (or not) and processing the presence and absence of different objects. A kind of microbial kinship emerges, in which individuals with AS exhibit similarities in their microbiota that unite them in a shared lived experience of their illness. The potential to decrease inflammation and stiffness in almost unimaginably fast periods of time resides primarily in and around one’s relationship with their gut. A constant, interactive back-and-forth materializes in interviewees’ narratives. Knowledge of leaky gut allows James to act on it with kombucha; Adam’s gluten elimination, for example, works to revert zonulin secretions and heal the mucosal lining. In this way, a gut-mind-body relationship, symbiosis, and circle become evident.
REFLEXIVE CARE
Across the interviews, individuals described the various ways they care for their bodies and minds, expressing their desires to relay and pass this knowledge on to other people with AS in a multitude of forms. They exhibit what I have coined reflexive care, an intrinsically motivated form of care meant to benefit others. For example, Joy became a medical cannabis physician because she reaped the benefits of CBD and THC first-hand and wanted to help individuals with chronic illness achieve symptom reduction via these pathways.
ON THE BALL
Interviewees expressed a sense of increased agency and power when taking health and healing into their own hands. A unique precarity inherent to autoimmunity and chronic conditions emerged in their narratives. Gaining “control” of their bodies and illness by way of different healing modalities requires constant experimentation, an iterative process towards balance, equilibrium, and stability. Some individuals seemed to grapple with whether they were supporting their body as well as they could in the face of uncertain disease progression, or rather, the “encroaching wall” of illness.
PEACE WITH THE DRIFT
Each interviewee surfaced various relationships to their AS and pain. A common thread was the process of coming to terms with one’s illness in light of shifting, elusive experiences of symptoms. Acknowledging and accepting one’s body in all forms and within ranges of pain and discomfort emerges as a critical shift in relating to AS. Moving from the fear and discomfort of diagnosis into acceptance and self-compassion opens up the possibility of new kinds of psychic, emotional healing.