Jennifer Brea

In this talk, Jennifer Brea offers poignant insight into the experience of living with a debilitating (and mostly misunderstood) illness—and spotlights the grit, resilience, and bravery exhibited by the patients fighting for better treatment and higher visibility.

At 28, Jennifer Brea was a PhD student at Harvard, in good health, engaged to be married. Then, without warning, everything changed. After weeks of fever, dizziness and infections, and terrifying neurological symptoms—the inability to draw, speak, or move—she found herself bedridden, and in excruciating pain. Doctors were unable to discover a biological cause—and her symptoms were attributed first to conversion disorder, and then to a distant emotional trauma.

Thus began Brea’s campaign of discovery—outlined, here, in an emotionally gripping keynote. Eventually diagnosed with Myalgic Encephalomyelitis, Brea found her community, but also a gaping hole in modern medicine. ME is cloaked in ignorance and rarely studied. It’s also steeped in pernicious beliefs about women’s bodies—a history of attributing psychological causes to physical symptoms (in fact, conversion disorder was once called ‘hysteria’). Since then, Brea has worked to change our culture and institutions by raising awareness for ME, lobbying government for better research, and banishing discrimination around women’s health. She is also an example of courage and strength in the face of what could be “a perfect custom prison.” Tracing the battlegrounds of the human body to the many human faces of a devastating disease, Brea inspires audiences to ask questions, find purpose, and, even in the darkest moments, believe in hope.

In this talk, Jennifer Brea explores the power of technology to generate meaningful virtual communities. At a time when fake news, cyberbullying, and the relentless social media comparison trap have some claiming that the internet is broken, Brea draws from her experience with the ME patient community to illustrate the internet’s more positive — and even life-saving — potential. How has social media been used to engage and mobilize disease groups, connecting individuals otherwise unable to leave their homes? And how did Brea, wrestling with a debilitating illness, use technology to collaborate with artists around the world and direct a sweeping, global film from her bed? With humor and optimism, Brea breaks down our fear of a digital dystopia and reminds us of the internet's potential as a generative space capable of forming profound connections.