Bonus material: Anne Örtegren's farewell letter

Headless Youth Podcast Podcast

In 2018, after 16 years of suffering with the illness ME/CFS, Anne Örtegren died by physician assisted suicide. Anne was a fierce advocate for ME/CFS patients; she wrote for HealthRising.com about her experience with the disease and why the world needs to pay attention and fund research. She explained her choice to end her life in a final post titled "Farewell – A Last Post from Anne Örtegren." This bonus material episode is a reading of that letter. You can read along here: http://lobel.nu/anne.html. You can find Anne's other posts here: https://www.healthrising.org/authors/anne-ortegen/. Please listen and pay heed to Anne's final words, they are important. Here's an excerpt we'd like to highlight: "It would be easier to handle if there were breaks, breathing spaces. But with severe ME/CFS there is no minute during the day when one is comfortable. My body is a war zone with constant firing attacks. There is no rest, no respite. Every move of every day is a mountain-climb. Every night is a challenge, since there is no easy sleep to rescue me from the torture. I always just have to try to get through the night. And then get through the next day. It would also be easier if there were distractions. Like many patients with severe ME/CFS I am unable to listen to music, radio, podcasts or audio books, or to watch TV. I can only read for short bouts of time, and use the computer for even shorter moments. I am too ill to manage more than rare visits or phone calls from my family and friends, and sadly unable to live with someone. This solitary confinement aspect of ME/CFS is devastating and it is understandable that ME/CFS has been described as the 'living death disease'... ...If we knew there were relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless."

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