One thing I was talking about with my therapist is how the Venn diagram of "people who have experienced PEM that forces you to lay in the dark and quiet for days and try not to think too hard so you don't crash again" And "people who are well enough to talk about those experiences" Is very small

i have been there it was terrifying and lonely and silent and awful i never want to go back to that point again whenever i get worse i feel hyper aware of what could happen. that i could crash down to that point again. but this time i don’t have a way to survive it

I literally just talked about this with my therapist at my last session

And also it feels very surreal because like... To my friends (even disabled ones) who haven't had this experience, there's this attitude of "wow that is some seriously bad luck" But I also know how lucky/privileged I am that I have improved. Many people don't.

I am one of those who survived it and improved enough to get out of the darkened room and talk about... but I am still very sick. 35 years of ME. It does change a person. It is also hard for those who haven't experienced it to really grasp it. Which leads to misinformation about ME 😞

I think the having big emotions knock me out for days thing contributed to the end of my 20 year relationship. I was too scared to talk about our problems because of the huge energy hit it would cause. Not great on my part. But also he picked fights at bedtime that took me a day+ to recover from.