For the millions suffering from the enigmatic condition known as long Covid, communicating the true extent of their illness is an ongoing struggle. Debilitating symptoms like extreme fatigue, shortness of breath, and searing muscle pain often persist long after the initial infection has passed. Yet frustratingly, patients frequently show normal results on routine medical tests. Many don’t “look sick,” causing some to question the authenticity of their disease.
But a new technique called “body mapping” is offering long Covid patients a powerful tool to express the physical, cognitive, and emotional dimensions of their illness that words often fail to capture. Developed by researchers at Oxford University, this alternative cartography approach invites sufferers to draw, write, or collage their experiences directly onto a life-sized outline of their body.
Illness as a Map
“We think of the body as a map,” explains Oxford’s Maaret Jokela-Pansini, who spearheaded the body mapping project for long Covid patients. “Pain, emotions, experiences – they are all located somewhere in your body, which in turn is seen in relation to a specific environment.”
Workshop participants begin by tracing their body’s outline onto paper. They then respond to a series of prompts, expressing their answers in whatever medium resonates – sketches, words, magazine cutouts. How did you feel before falling ill? What impact has long Covid had on your everyday life? How has it changed your self-perception?
“Body mapping is really about storytelling.”
– Maaret Jokela-Pansini, Oxford University researcher
Patterns Emerge
While each body map is as unique as the individual who creates it, certain motifs appear again and again. Many depict shadows – “participants use them in the sense that they are now only a shadow of what they were before,” notes Jokela-Pansini. “The world has moved on, but they are still living in the pandemic – an experience that can be profoundly isolating.”
For Oonagh Cousins, a former Olympic hopeful rower whose athletic ambitions were dashed by long Covid, body mapping offered a cathartic space to reflect on the nuances of how illness inhabits the body. “You might ask: where is the pain located? Is it in the gut, in the heart, in the arms? What does it feel like? Is it red, is it orange, is it lots of scribbles, is it soft?”
Seeking Validation
Beyond creative expression, body maps may give long Covid patients something even more crucial: credibility. “Many people with long Covid struggle with family members not believing them,” says Dr. Carolyn Chew-Graham, a Manchester GP. “It isn’t just healthcare professionals who can gaslight patients, it’s also partners and family members.”
Having a tangible representation of their internal experience can help long haulers feel seen and validated. Jokela-Pansini envisions body mapping as a communication bridge, allowing patients to share how they really feel with clinicians and loved ones in a way that demands to be understood.
A Holistic Perspective
As awareness of long Covid grows, so does recognition that decoding this complex condition will require input from all angles. Social scientists, medical researchers, healthcare providers, patients and caregivers each hold a vital piece of the puzzle.
“It’s important to look at all these different layers, because each one of them contributes to a better understanding of post-infectious disease.”
– Maaret Jokela-Pansini
While no one claims body mapping will cure long Covid, its proponents believe it can provide a measure of empowerment and relief to those living under the shadow of a maddeningly invisible malady. By translating their unique illness stories into tangible, visual form, long haulers are reclaiming the narrative – mapping their own journey back to health and wholeness.
