Learning from Long-Haulers about Rest and Radical Pacing

OFF-KILTER with Rebecca Vallas

This week, Off-Kilter returns to our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work.

As we’ve explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.

And to that end, for this week’s episode, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative, a new organization that advocates for folks with long COVID; and Ryan Prior, a journalist-in-residence with TCF’s Disability Economic Justice Team, a board member of ME Action (which works to build awareness about a condition called ME/CFS), and author of The Long Haul.

Picking up on a conversation they had last July for the podcast about the patient advocacy revolution sparked by COVID long-haulers, they had a far-ranging conversation about what we can learn from the long COVID and ME/CFS communities when it comes to radical self-care, with a deep dive on the practice of “radical pacing”; the significance of self-care as political warfare to the chronic illness community; how patient advocacy itself is a form of self-care, particularly for folks with invisible chronic illnesses; the policy and cultural shifts needed to ensure basic practices like rest are universally available; and more.

For more:

• Learn more about and get involved with the Patient Led Research Collaborative and ME Action

• Get your copy of The Long Haul

• Listen to the July 2022 episode of Off-Kilter on the long COVID patient advocacy revolution that comes up in the discussion

• Read a piece by Ryan on the World Health Organization declaring burnout an official medical diagnosis