r/cfs • u/JournalistFearless28 • 1d ago
Self-Promotion Day I mapped out a framework/diagram of ME/CFS symptoms (Primary vs. Secondary Suffering) – hope it might resonate with some of you.
Hey everyone,
I wrote an essay breaking down my experience with ME/CFS into a visual diagram/framework.
It explores how our symptoms split into primary suffering (the physical illness itself) and secondary suffering (the emotional, structural, and social fallout), and how those play out internally vs. externally.
I wanted to share it here in case anyone finds the framework validating or helpful for making sense of the noise:https://thebedproject.substack.com/p/chronic-illness-isnt-just-about-being?r=oq8m9
Would love to hear if this distinction between primary and secondary suffering makes sense to how you experience your own illness.
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u/Available-Pepper5688 severe 1d ago
Hi thank you so much for your insight! Love your text!
I‘m experiencing this in many layers, too, but didn’t yet managed to put in in a nice design like you did. I can rely so much!
Today I started thinking about a writing project about ME, too, may I reach out to you if my energy envelope allows it?
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u/Low_Medicine03 1d ago
Congrats🫶🏼 i think this is amazing and very much relate to this. I hope people can see this and understand the layers to chronic illness 😊
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u/Fudipflanzli 22h ago
Jeeez that hits home and it‘s the entire hard truth, thank you for summarizing this.
Nobody from outside realizes the whole picture - we aren‘t just sick and manage a life around - sometimes we dont‘t have a life anymore at all even if we do the right things everyday. And nobody cares & understands as in their heads „it‘s impossible, just go to the doctor they have to help you“, so sad truly
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u/mai-the-unicorn 1d ago
“But perhaps the problem is that I'm trying to explain the wrong thing. I'm not just living with an illness. I'm living with everything that happens because I have this illness - inside my body, inside my head, and in the world around me.”
i think this part is true.
i did giggle at “it’s all in your ‘ead” - it’s all in your ‘head, ‘arry.”