Grief Stories #5: Colleen shares a long-term perspective on Myalgic Encephalomyelitis

Colleen has been living with ME/CFS since 1989, as she says 'it's been a while'. Colleen oversees two facebook groups:
ME-ICC & Other marginalised diseases (public group)
ME-ICC Info (Private group)
She also writes a substack: View from the Trenches of Myalgic Encephalomyelitis which you can find here:
colleensteckel...
Contact the podcast:
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www.pempod.com/

[@clairenaylor8346]

Absolutely.... NOT OUR FAULT X soo important to understand that, especially where we're told we are responsible for the disease 💙🙏💙

[@TamraLSpeakmanShatul]

Thanks lovelies this was timely for me. Definitely in that grief mode right now. Appreciate you both!

[@colleensteckel5191]

Thanks Tamra. This is a difficult time of year.

[@dovzeller4544]

Great conversation Dan and Colleen! (We have to build so many coping skills, find ways to comfort ourselves within the very limited confines of what we can do, and go through grieving processes over and over. And deal with people telling us it's our fault somehow. I'm glad we have each other!...)

[@colleensteckel5191]

I'm glad we have ways to communicate. I was much more isolated 30 years ago! I look forward to the day when people realize ME is not our fault - it can (and does) happen to anyone.

[@bazia7927]

Thank you both for educating people about Myalgic encephalomyelitis & the grief that accompanies us always.
Great point Colleen, on spontaneity & excitement being untouchable.
Also agree loss that is ever present for the entire family.
Thank you Colleen, you’re such an amazingly wise person & advocate for our community.

[@Post-ExertionalMayonnaise]

Thanks for watching

[@colleensteckel5191]

Thanks Bazia.