Unexplained illness as a canvas on which people project their own issues

[Hoopoe]

I believe that unexplained illness often becomes a canvas on which people project their own biases, anxieties, desires, conflicts, and so on. They do so by constructing a narrative around the presumed cause of the illness. They seek to advance their point of view and the conviction reveals how personal it is to them. It is no longer about finding an explanation that make sense, it's about righting an injustice, highlighting something important that was not seen, upholding positive values against the decay of values represented by the illness, and so on. We patients probably tend to do the same to some extent.

It's also common to project one's insecurities on patients. Invalidating unexplained illnesses and pathologizing character of patients helps boost self-esteem, revealing the underlying low self-esteem of the person engaging in this behaviour.

Why am I writing this? I came to believe the this from following the debates around ME/CFS. Today I read about Freud's ideas, out of curiosity, to understand how they have influenced modern beliefs around unexplained illness. It struck me how his ideas only made sense in his social and historical context, where sexual repression was the norm. By claiming that repressed desires caused neurosis, he provided an excuse for a sexually repressed society to change their attitudes. In his work, neurosis sees to function as canvas on which to project society's conflicts.

How can this awareness help us today in our struggle? Maybe it can help us become a bit more objective, more focused on what matters, and less upset when some people write nonsense about ME/CFS.

 

[Hoopoe]

Maybe one of the societal issues of our time is that we can't accept that there are limits to our competence. ME/CFS is left in no-man's land because the system was built on an assumption that everything can be explained, managed, controlled. When the attempts fail, the conclusion is that the illness is not real (in the various interpretations of this word). When it is accepted to be "real", there are neverending and futile attempts to rehabilitate patients without asking the question of whether it is sensible to attempt this. Science for ME is one of the few places where people question these assumption of competence, controllability, etc.

We're a society that values agency, hard work and taking control of our destiny. Disability is accepted when it's a story of overcoming adversity. ME/CFS as illness where you just have to accept that you can't do much, effort is even counterproductive, and no one can help you is deeply in contrast to these values.

We might achieve more if we accepted and sought to better understand the limits to our knowledge and competence, and stuck to what is within them.

 

[Arnie Pye]

I believe that unexplained illness often becomes a canvas on which people project their own biases, anxieties, desires, conflicts, and so on. They do so by constructing a narrative around the presumed cause of the illness. They seek to advance their point of view and the conviction reveals how personal it is to them. It is no longer about finding an explanation that make sense, it's about righting an injustice, highlighting something important that was not seen, upholding positive values against the decay of values represented by the illness, and so on. We patients probably tend to do the same to some extent.

It's also common to project one's insecurities on patients. Invalidating unexplained illnesses and pathologizing character of patients helps boost self-esteem, revealing the underlying low self-esteem of the person engaging in this behaviour.

Why am I writing this? I came to believe the this from following the debates around ME/CFS. Today I read about Freud's ideas, out of curiosity, to understand how they have influenced modern beliefs around unexplained illness. It struck me how his ideas only made sense in his social and historical context, where sexual repression was the norm. By claiming that repressed desires caused neurosis, he provided an excuse for a sexually repressed society to change their attitudes. In his work, neurosis sees to function as canvas on which to project society's conflicts.

How can this awareness help us today in our struggle? Maybe it can help us become a bit more objective, more focused on what matters, and less upset when some people write nonsense about ME/CFS.

When my brain is not up to reading something serious or worthwhile I have to admit that I sometimes read youtube stories. I do this because I can abandon them without feeling the need to go back to them at any time, and I really don't care if I don't finish them and/or can't find them again.

One very common trope in these stories is the person/AI allegedly writing the story is ill but nobody believes them because there is nothing obvious to see, particularly the parents but also siblings. And the main complaint from the family? The sick person is "attention-seeking". And that is practically treated as a crime of the century that deserves a death sentence.