Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise

I remember an absolute incident once after some people had “unconscious bias” training. Basically they were confronted with the world-altering news that because everyone has some kind of unconscious bias, they did. They were so angry at being accused of something so awful. I mean furious. Saying they were condemned as a racist on no evidence.


I’ve seen similar when it’s suggested that someone was being unkind and bullying in an approach. Absolute personality collapse, wailing and gnashing that they couldn’t be a bully, they had their school years ruined by a bully and the idea they themselves could have upset another person in such a way which they had found so painful…no


People are weird.
 
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Lack of understanding and even recognition of long term disabling illness is everywhere. I signed up years ago to fill in YouGov polls about once a month. I have just done one where every question was designed to find out my preferences for spending and activities. Not one provided any option of 'I can't do this because of disability, poverty or caring responsibilities'. My answers made it seem like I stay home doing very little from choice.
For once I actually told them in the feedback. Usually I don't bother. It's like our lives are not worth recording.
No I'm not noddy no mates from choice. No I don't avoid travel on trains or planes or anything else from choice. No I don't avoid cinemas, outings with friends, going on holiday from choice. There was no real option for me to select that reflects my reality.

We are written out of existence.
 
Trish said:
Lack of understanding and even recognition of long term disabling illness is everywhere. I signed up years ago to fill in YouGov polls about once a month. I have just done one where every question was designed to find out my preferences for spending and activities. Not one provided any option of 'I can't do this because of disability, poverty or caring responsibilities'. My answers made it seem like I stay home doing very little from choice.
For once I actually told them in the feedback. Usually I don't bother. It's like our lives are not worth recording.
No I'm not noddy no mates from choice. No I don't avoid travel on trains or planes or anything else from choice. No I don't avoid cinemas, outings with friends, going on holiday from choice. There was no real option for me to select that reflects my reality.

We are written out of existence.
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I don't often fill questionnaires like this but even on some government questionnaires I often notice how there are no options for being disabled, even to questions such as employment status. They'll have students, retired, and so on, but no option for being out of the workforce for health reasons.

Coming from random shops or marketing, whatever, but from governments? Really?!

We are absolutely written out of existence, especially by the experts on this very issue.
 
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