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Every day, millions of people around the world suffer from chronic pain, which frays their nerves and diminishes their quality of life. Recent research suggests that although interactive pain companions can’t wish pain out of existence, they may help to make it more palatable.
“In the isolation of pain, even the most uncompromising advocate of individualism might suddenly prefer a realm populated by companions, however imaginary and safely subordinate” (Scarry, 1985, p. 11).
Alleviation of chronic pain has been explored not merely in medical studies but also in the design field. Design researchers mainly focused on developing alleviation [1] or self-assessment [2]. However, mitigation of such a painful phenomenon is important as design researchers have overlooked the mental challenges of living with chronic pain. To address this, I developed interactive textile companions to help people with chronic pain. These sensorial companions encourage a closer understanding of the body in pain, fostering self-care practices.
My interest in chronic pain began with persistent upper back pain, soon followed by a chronic gut disease causing abdominal pain. This experience showed me how pain can dominate lives and force changes. Pain can alter bodily capabilities [3] influencing how we perform daily tasks such as work, study, sports, etc., and can even render the body bedridden [6]. Pain is physical but due to forced changes it brings forth, it creates mental struggles. It often leads to fear because of its ambiguity and the loss of physical abilities [4]. Hence, people lose their bodily agency and develop a fear of movement due to pain. This is called the fear-avoidance model which can lead to increased fear, phobias, and disuse syndrome, worsening pain over time [5].
By spreading fear, pain shapes how we perceive ourselves and the world. As humans, we are not merely mechanical bodies made out of flesh and bones, but we have sensory capacities. We receive constant multi-sensory information both from our surroundings and our bodies. Simply put, this is how we make sense of our bodily experiences and the world around us. Pain is sensory information that comes from our bodies. We can alter our pain perception and bodily understanding of pain through external sensory stimuli. In doing so, we can support people to regain their bodily agency.
“Good News: It turns out understanding pain is a very good way of relieving pain.” (Haines, 2015, p. 3)
Bodies always find their ways to communicate with us, we just need to learn [perhaps remember] how to listen to them. At times, we may need companions who can remind us how. So, I designed a wearable interactive textile companion that mediates sound-touch-movement interactions (Figure 1). This companion –Pain Creature– externalizes the implicit experience of pain by mediating different sounds that represent various qualities of pain. Doing so enables people to communicate with pain differently to develop new bodily understanding. Moreover, it empowers people to find new ways to move with pain to regain their bodily agency.
Before Pain Creature, I made different companion prototypes informed by the lived experience of my pain and other people’s pain. These explorations helped me to understand how a pain companion can be designed to support new bodily perceptions and self-caring practices. When designing pain companions, the lived experiences of people become essential resources that enrich the design artifacts.
Hazel, a participant who tried the previous prototype, said, “But I can feel its [prototype] existence, and this is a wonderful sensation. It was like a cute animal… it wasn’t doing miracles but it was there to help me. It evoked a feeling like it was saying ‘okay, now relax, it will get softer, it will pass.’ It was like companionship.” As we see from Hazel’s comment, pain companions are not miraculous artifacts. Rather, by being there for the person, they encourage people to find new ways of living and being with their pains, as well as inspire self-care.
This research demonstrates the potential of wearable interactive textiles to impact lives positively. These technologies offer new ways to cope with chronic pain. As a person in pain, I acknowledge that the journey of cultivating self-care has ups and downs. It is a challenging but rewarding life-long journey. But with pain companions, we will not be alone in this expedition.
Author of this article is Arife Dila Demir from Estonian Academy of Arts. Editor Jaan-Juhan Oidermaa.
Article written for the contest “Science in 3 minutes” organised by Estonian Academy of Sciences and The Estonian Young Academy of Sciences (EYAS). Main sponsor of the competition is Inclusive Financial Technology Foundation.
References
[1] Gozde Goncu Berk. 2018. Design of a wearable pain management system with embroidered TENS electrodes. IJCST 30, 1 (March 2018), 38–48. https://doi.org/10.1108/IJCST-04-2017-0047
[2] Zakia Hammal, Nadia Berthouze, and Steffen Walter. 2021. Automated Assessment of Pain. In Proceedings of the 2021 International Conference on Multimodal Interaction, October 18, 2021. ACM, Montréal QC Canada, 852–852. https://doi.org/10.1145/3462244.3480985
[3] Richard Shusterman. 2019. Pleasure, Pain, and the Somaesthetics of Illness: A question for everyday aesthetics. In PATHS FROM THE PHILOSOPHY OF ART TO EVERYDAY AESTHETICS. Finish Society for Aesthetics, 201–214.
[4] Sandra P. Thomas and Mary Johnson. 2000. A Phenomenologic Study of Chronic Pain. West J Nurs Res 22, 6 (October 2000), 683–705. https://doi.org/10.1177/019394590002200604
[5] Johan W.S. Vlaeyen and Steven J. Linton. 2000. Fear-avoidance and its consequences in chronic musculoskeletal pain: a state of the art. Pain 85, 3 (April 2000), 317–332. https://doi.org/10.1016/S0304-3959(99)00242-0
[6] Virginia Woolf. 2021. On Being Ill. The Menard Press, London.
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