Thread by @_diatoma

So many people are so attached to the malingerer narrative. In a BBC 2013 “Great Lives” podcast on Florence Nightingale the museum professional who chose her describes the statistician and sanitary reformer as “someone who it seems to me almost revels in her suffering’ (1/x)

Mark Bostridge, who wrote the 2008 Nightingale biography responds (bless him), “I think that’s unfair, because she was seriously ill and for decades historians and biographers portrayed Nightingale as a malingerer…” (2/x)

Bostridge mentions chronic brucellosis, brings up spondylitis, and both the museum professional and the host express skepticism. (3/x)

The biographer expands on the progress of the disease and the other two insist:
“But how can you prove that none of this was in her mind?”
“It could’ve just been acute depression.” (4/x)

Cultural hosts and museum curators need to understand better the history of medicine and ideas and biases (including ableism), and to know that infection-associated chronic illnesses exist and have existed (and that they can also include neuropsych symptoms). (5/x)

And that whatever they mean by ‘in her mind’ is not actually an avante garde interpretation of complex disease. (Plus, it really doesn’t get more dualistic than saying ‘all in her mind’. See @b_m_hughes's work) (6/x)

Even if Nightingale’s illness happened to not be chronic brucellosis, and even if it hadn’t begun with a clear acute infection, she was essentially bedbound for more than two decades and referred to her bed as a prison. (7/x)

(Moreover, I can’t imagine, with her wealth and status, that the only solution for her to dive into work was to feign or somehow self-cause tortuous pain, fatigue, nausea, insomnia, etc.) (8/x)

My main point here is that we’re still suffering for the love of these offensive narratives. I wouldn’t be surprised if these two podcast speakers expressed skepticism over #LongCovid, #MyalgicEncephalomyelitis, #ChronicLyme, etc. (9/x)

I get that vulnerability is scary and we want to think people do something to deserve to be ill, or choose to make their physical world as big as a bed, but these coping mechanisms don’t match the reality of disabled and chronically ill people, myself included. (10/x)

Cultural institutions need to listen and hire disabled and chronically ill people so that these ableist ideas aren’t the norm. (11/x)

ps. I always want to dare people who accuse others of being consciously or unconsciously ‘strategically ill’ to be housebound themselves for a year, a decade. (12/x)

Even without a multitude of symptoms, financial anguish, or medical gaslighting. Even with someone else making their meals and cleaning. And them always being able to read, write, draw, watch TV. I wonder how many would continue to see it as a form of desirable ‘escape’. (13/x)

As always, thank you to the people doing the difficult work of communicating publicly on infection-associated chronic illnesses (@jenbrea, @exceedhergrasp1,@ahandvanish, @CynthiaAdinig, @meghanor, @davidtuller1, @edyong209 and many others)

Adding to my gratitude list: @sunsopeningband @DafoeWhitney @AnilvanderZee and some of my favorite organizations @MEActNet @polybioRF @4Workwell @WorldMEAlliance @OpenMedF @PlzSolveCFS