Playfulness for Justice in Chronic Pain Care

"How many squats/lunges can you do before you want to die?"

I suggest that we consider how to encourage playfulness in chronic pain care. Drawing on the framework provided by feminist philosopher Maria Lugones, I conceive of playfulness as an attitude, not an activity. Playfulness requires a) openness to co-creation and improvisation – a willingness to engage with others in a flexible and unscripted manner, b) openness to surprise – being receptive to unexpected outcomes and expressions, rather than striving for control of the situation, and c) openness to being a fool – rejecting perfectionism and expertise and allowing oneself to be vulnerable. Taken together, playfulness builds increased sensitivity to the world’s differences. Honing this attitude can safeguard against the injustices faced by people living with chronic pain.

Two common themes throughout the scholarship on pain are invisibility and un-shareability. The first, invisibility, refers to the idea that the pain of another is, in principle, inaccessible. The second, unshareability, refers to the challenges involved in expressing pain - bringing it out of concealment so that it might be accessed. These two themes are linked, and they create a lacuna, a lack of vocabulary with which to express and understand how chronic pain feels, what it does, and how it changes people’s lives. 

Medical paradigms and their associated technologies play a massive role in this perennial problem. Thus, these are examples of pathocentric epistemic injustice: injustices that are sustained by dominant medical systems and the theoretical conceptions of health that underpin them. Biomedical approaches to chronic pain mobilize a specific theoretical understanding of pain, and these understandings shape who is thought to be a credible speaker and what forms of expression and speech are intelligible. According to this framework, conceptions of health themselves can be unjust.  

While the field of pain studies has made progress in complicating narrow biomedical explanations of pain, as Patsavas (2014) notes, these communicative norms have yet to find their way into popular understandings of pain. For example, adjectives found on the McGill pain questionnaire, the most frequently used questionnaire for the multidimensional assessment of pain, have crept into the common lexicon. We may ask our friends to describe their pain with these familiar qualifiers, such as burning-, tingling-, or shooting-. We might also ask our friends to rate their pain on a scale of zero to ten, drawing on the Visual Analogue Scale used by medical professionals. 

But what if the person experiencing pain wants to describe their pain as a wave or a colour? What if I want to express my pain by making a long, guttural sound? In her creative non-fiction titled “The Pain Scale”, Eula Bliss reflects, “Although the distance between one and two is finite, it contains infinite fractions”. When patients are unable to express more than pain intensity, this may lead to guilt, shame, and alienation, all of which should be understood as affective determinants of health. That is, these emotional experiences can make one’s pain worse. Pain relief comes not only in the form of excising pain (should this be possible) but also in understanding it. There is thus a pressing need to carefully consider how we might expand, invent, and promote new modes of creative expression.

Field notes that capture participants' emphasis on laughter and play

My paper draws on fieldwork conducted at a somewhat unconventional chronic pain clinic located in Toronto, Canada. Instead of offering one-on-one interactions (between a ‘credible’ pain expert and ‘less-credible’ patient in pain), the clinic operated more as a support group. No pain was measured, and no medicines were prescribed. Instead, patients showed up to talk about how their pain was affecting them spiritually, physically, and existentially. They laughed, they opined, they meditated, and they moved around the room doing silly strength- and mobility-building exercises. 

At the beginning of my observations there, I was mesmerized by the playfulness and levitous mood of the clinic. Mastery was eschewed by the physician (Dr. C) – he frequently reminded participants that they, not him, were the masters of pain. From dark jokes to improvised seating arrangements to casual coffees afterward, this landscape marked a notable departure from biomedical contexts that contribute to pathocentric epistemic injustice in chronic pain care. I characterize MB clinic as imbued with the playful attitude described by Lugones, which is antithetical to the rigid and expert-driven models of healthcare.

This approach may serve as a potential reform that emphasizes patient participation and emotional well-being. In the future, I am interested in exploring how medical educators might encourage this sensibility in training, as well as how playfulness might be better incorporated into the tools that are used in diagnostic and therapeutic encounters. 

Michelle Charette is a PhD candidate in the Science and Technology Studies Program at York University. Her work draws on science studies, phenomenology, and feminist theory to consider how bodies and technologies interact. Her doctoral project examines e-health approaches to chronic pain care, and how these tools (games, applications, virtual reality) introduce novel issues and questions about chronic pain, technology, and ethics in medicine.