Long Covid significantly affects individuals worldwide, with limited treatments currently available. Insights from human geography, particularly through body mapping, are being utilized to understand patients’ multifaceted experiences of illness. This method encourages participants to visually express their health journey, enhancing communication with healthcare providers. Workshops led by researchers aim to capture personal narratives, highlighting the importance of qualitative data in addressing the needs of Long Covid patients and fostering better understanding in medical practices.
Understanding Long Covid Through Human Geography
Long Covid has profoundly impacted the lives of countless individuals across the globe, yet effective treatments are still lacking. Presently, medical interventions offer only limited assistance to patients. To enhance our understanding of this complex condition, insights from diverse fields, particularly human geography, are becoming increasingly important.
Human geographers typically explore the interconnectedness of events and phenomena across various scales, from local to global. Maaret Jokela-Pansini, a geographer affiliated with the universities of Zurich and Oxford, emphasizes that “the body serves as the first scale” in human geography. “Our experiences, including illness, are fundamentally shaped by our bodily experiences.”
The Impact of Context on Illness Experience
This notion is particularly relevant in the context of disease. The perception of illness, including pain, emotional responses, and resilience, is influenced by various factors such as age, gender, socioeconomic status, environmental conditions, and the healthcare system. “When considering health, it’s essential to incorporate the dimensions of space and time,” Jokela-Pansini notes.
For individuals grappling with Long Covid, daily life can be significantly disrupted. Their symptoms hinder effective communication, often leaving them feeling misunderstood in a sometimes skeptical environment. The scope of their experience extends far beyond mere physical symptoms, and Jokela-Pansini aims to capture these multifaceted experiences of illness.
In her research, Jokela-Pansini discovered body mapping, a method used in social sciences and medical research, particularly with trauma and chronic pain patients. This technique allows individuals to create life-sized outlines of their bodies on large sheets of paper, which they then personalize based on guided questions, forming a unique body map that tells their story.
Last year, alongside Beth Greenhough at the University of Oxford, Jokela-Pansini initiated the “Visualising Long Covid” project, conducting eight workshops with women experiencing Long Covid. Participants were encouraged to reflect on their health prior to illness, how it affects their daily lives, the support they receive, and how their self-image has transformed. They explored what could enhance their quality of life.
“Body mapping is fundamentally about storytelling,” asserts Jokela-Pansini. Each participant’s experience with illness is unique, although common themes often emerge. For instance, many individuals depicted shadowy silhouettes during workshops, symbolizing their feelings of being a mere shadow of their former selves and their sense of being trapped in a different timeline as others moved forward.
Participants often begin by drawing either their head or heart, using photographs or newspaper clippings to express their experiences more vividly. Oonagh Cousins, a workshop participant, highlights the challenges of articulating her experience, pointing out that terms like “fatigue” fail to capture the depth of suffering associated with Long Covid. “It’s not just tiredness; it’s a profound illness that leaves you feeling utterly weak and fragile,” she explains.
Body mapping provides a safe space for participants to articulate and share their experiences of illness. Cousins, now 29, reflects on how Long Covid derailed her promising athletic career just as she qualified for the British Olympic rowing team. The loss of those years, which should have been filled with opportunity and adventure, is a source of deep grief for her.
Despite her struggles, Cousins acknowledges that her status as an athlete lent her credibility in the eyes of others that many do not possess. “I was believed when I said I was unwell, which can drastically alter how one experiences illness.” Although she is feeling better, Cousins still grapples with limitations, unable to fully resume training or work without triggering symptoms.
In collaboration with Long Covid Switzerland, plans are underway to host body mapping workshops in Switzerland next year, alongside an online tool developed with Long Covid Support to assist those unable to attend in person.
Enhancing Communication in Healthcare
Could body mapping ultimately ease the challenges faced by participants and improve their interactions with the healthcare system? While this method does not directly influence treatment outcomes, it has the potential to enhance communication. One participant shared her body map with her doctor, stating, “This is me,” which facilitated a more effective dialogue.
Body maps can serve as valuable tools for conveying complex information in brief medical consultations, fostering a better understanding between patients and healthcare providers. Additionally, they create opportunities for participants to share experiences with one another.
The qualitative insights gained from body mapping are crucial, especially in a field where quantitative measures are often insufficient. Chantal Britt, co-founder and president of Long Covid Switzerland, underscores the importance of these qualitative perspectives in addressing the needs of Long Covid patients. “Standardized measures can overlook the nuanced realities of patients’ experiences,” she notes, emphasizing that the mere existence of consultation hours does not equate to adequate care.
As medical research evolves, the inclusion of patient perspectives is becoming increasingly vital. Collaborations among historians, anthropologists, geographers, and medical professionals, along with the integration of artificial intelligence, are enriching the understanding of Long Covid and its myriad dimensions.