[mnorton]

the narrative of 'chronic' illness is a shame

edit: I always get beat up on the internet when I make comments like this. Not sure why I keep doing it. Slow learner. In this case, I meant that it is a shame medical professionals tell folks that their issues are going to be with them for perpetuity, as in a lot of cases the medical professional is reinforcing a narrative of helplessness.

https://www.amazon.com/You-Are-Placebo-Making-Matter/dp/1401...

[citizenkeen]

What part of Chrohn's doesn't fit the definition of chronic for you? Or what part of the article contributes to a shameful narrative?

[existentialhalt]

The word "placebo" has been used against me over and over. It is frequently used as a justification for ignoring chronically ill people. It suggests that we are incapable of feeling anything physically real in our bodies.

Totally agree that chronic illness is curable if you look outside the traditional healthcare system. But that book is hand-waivey mumbo jumbo.

[mnorton]

> It suggests that we are incapable of feeling anything physically real in our bodies.

It makes me sad that this is the representation the word has to you. I think the book is an honest attempt to change exactly this type of impression about the term placebo.

[mnorton]

the book is what you make it. most of the beginning of the book is actual cases of folks taking their health into their own hands, which I find empowering.

certainly dont condone throwing placebo around as a reason to ignore chronically ill people.

just think folks are not presented with this path of recourse by the traditional healthcare system. the placebo is treated as a dirty word and stigmatized. why not attempt harness it? who cares if you cant currently explain the mechanisms at work, the results are what matter.

[existentialhalt]

I'll bookmark it and maybe look at it someday. But my illness is caused by mercury poisoning, and I'm responding dramatically to treatment, so not very interested in inexplicable theories at the moment.

[mnorton]

well yeah. if you have an actual diagnosis such as that, a treatment protocol known to be effective makes perfect sense.

[cerebellum42]

Regarding your edit: Had you written that in the first place people might have reacted much differently instead of "beating you up"...

The original statement just sounds like a vaguely provocative (but maybe not, because it's so vague) statement with nothing to back it up. Hence the negative reaction

[mnorton]

I certainly understand

[huy-nguyen]

Unless you or someone close to you is suffering from one, you won't understand what it's like.