By Cort Johnson in Phoenix Rising.
ME/CFS needs witnesses – people who can stand firm in the face of denial and rejection and tell their story to the world. Each time we responsibly speak the truth to the medical profession, or our families, or our friends, or the NIH or whomever we begin to move the conversation around chronic fatigue syndrome (ME/CFS) in a different direction. It moves from invalidation to validation; from dismissal to concern; from ignorance to knowledge. Witnessing is how we produce change. Valerie Free is a witness for ME/CFS.
Valerie’s journey to become a witness for ME/CFS began with journaling, a sometimes painful process which nonetheless turned out to be a validating experience. She began to work on her book “Lighting Up a Hidden World: CFS and ME” after having what she described as a life-altering conversation with Tara Hyland-Russell, PhD, a professor of English literature and life-writing. Once Hyland-Russell explained about “the importance of bearing witness to the history of an oppressed group”, and how storytelling can be used to mobilize social change something clicked inside her.
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