Jennifer Brea🦒 Profile picture
Sep 2, 2018 26 tweets 9 min read Twitter logo Read on Twitter
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
If women insisted on "having it all" and tried to step outside their natural domestic sphere, their health would surely deteriorate and with it, the whole of civilization.
Care for women who were chronically ill often involved depriving them of books and refocussing their energies on more appropriate feminine occupations, like childcare and needlework.
That is the intellectual antecedent of @SarahbaxterSTM's argument.
There is absolutely no scientific evidence that #fibro is caused by "women who want to have it all" any more than ambition or hard work cause #mecfs #lupus #MS #Alzheimers #sjogrens #rheumatoidarthritis #hashimotos #myasthenia gravis #scleroderma pernicious #anemia
...#antiphospholipid syndrome, autoimmune #hepatitis #gravesdisease or any other of a number of immune-mediated diseases that disproportionally affect women.
How is it responsible @SarahbaxterSTM to offer your personal conjecture in a major newspaper about the cause of someone’s illness, buttressed only by a string of anecdotes involving completely unrelated conditions?
Why not also go ahead and guess at the melancholic disposition of people with #tuberculosis, the bond of mothers to their #autistic children, the emotional repression of someone dying of #cancer, or speculate that #HIV might be some kind of moral retribution?
I suppose because now we not only know that these folk explanations are scientifically untenable, we understand the profound damage they caused.
That you're allowed to get away with writing a piece like this about fibromyalgia but not Alzheimer's ("She's trying to forget the deep trauma of a life lived trying to have it all") is simply a reflection of the poor state of our knowledge about fibromyalgia.
Why is there such little knowledge? Because we don’t invest enough in research. (The US National Institutes of Health, the largest funder of medical research on the planet, invests just $2.5 per patient per year.)
Why don’t we invest more in research? In part because of the peddling of well-trod stereotypes such as these.
We need to break the cycle of stigma, pseudoscience, and pop hot takes and invest in actual research and better medical education. I hope in the future the editors of @thetimes choose to use this platform to explore questions of public value like:
Why do so many #autoimmune diseases disproportionately affect women? (Hint: it might have to do with innate sex differences between men and women’s immune systems, not their behaviors or personalities.)
What are the consequences of decades of underinvesting in women’s health and forgoing women as subjects in clinical trials? (Hint: for one, a much higher risk of dying from a heart attack, as @mayadusenbery writes)
Why is the current medical system so poorly suited at diagnosing and treating people with chronic illness?
And how does this deeply engrained medical sexism also harm men?
Context also helps: Why does medicine have such a long history of explaining the poorly understood or the untreatable as psychological or psychosomatic (e.g., tuberculosis, rheumatoid arthritis, cancer, epilepsy, multiple sclerosis, stomach ulcers, autism)?
Why, after being proven wrong so many times, do we still cling to these explanations and allow them to persist without scientific proof or objective validation?
What is the impact of the psychologization of pain and chronic illness on women’s health and on the rates of disability and mortality for all people with chronic illness?
How does this all relate to the intersection of sexism and ableism? As well as our assumptions about class and belief in a just world?
What does the scientific research actually have to say?
Explaining natural phenomena, and in particular disease and death, in moral terms is deeply human. (See: Susan Sontag’s “Illness as Metaphor” and "AIDS and its Metaphors")
However, we now have tools that help us guard against those instincts: mathematics, statistics, advanced measurement techniques and over a century of scientific research, all readily accessible by Google!

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More from @jenbrea

Sep 21, 2018
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
Sep 16, 2018
If you were going to frame an umbrella term to comprise related diseases like ME, EDS, fibro, MCAS, POTS, endo (and others), what would you call it?
Note: I’m not talking about a scientific umbrella. We don’t yet know enough to say that there’s an underlying biological relationship and if there is, between which diagnoses, and for what reasons.
We just know that these conditions tend to flock together, whether for scientific reasons or social ones (e.g., diagnostic uncertainty).
Read 12 tweets
Sep 12, 2018
I've had remarkable control or at least perspective on every single emotion I've experienced these last six years. I realize now it wasn't courage or astonishing emotional maturity. It was self-protecting resignation. It felt necessary in the face of neglect, disbelief, abuse.
It’s helped me achieve more than I ever imagined under some extraordinarily difficult circumstances. But survival strategies developed under duress usually, eventually outlive their usefulness.
I've started to experience what medicine can look like at its best. I’ve met doctors who think like scientists, but operate like detectives; who are that rare mix of creative, curious, skeptical, rigorous. It's allowed me to open myself up to hope and but with it, utter terror.
Read 17 tweets
Aug 22, 2018
Guys, I just learned that *A LOT* of people are ableist. 😲
Institutionalized ableism? Check. Welfare spending, scientific research, the medical system, public access, hiring & employment, consumer design, the media. We don't even do the minimum rational, in everyone's self-interest stuff yet.
But then #Afflicted happened and I LOOKED INTO THE SOULS OF MEN.
Read 13 tweets
Aug 14, 2018
The heavy-handed (totally out of context) physician commentary on the cases of patients they have never seen or interacted with is so irresponsible. #Afflicted
I have *never* heard of some of the doctors commenting on Jamison's case. This means they don't regularly see ME patients, don't research the disease, and have zero clinical or research expertise. #Afflicted
They filmed at a Stanford symposium that included top researchers from around the world, yet decided to use totally unrelated, nonexpert interviews to comment on Jamison's case in order to convey a POV that fit their narrative. #Afflicted
Read 106 tweets
Jun 26, 2018
I know people have been asking how I'm feeling. I don't have much to say at this point other than thank you so much for your support over these last many weeks. Overall, I'm weak and it's going to take time.
The cancer treatment at UCLA was world class. I felt like I had walked through a portal into the future. They next day, when no one could understand why I couldn't sit up, much less walk, I was snapped back to the 19th century.
These two experiences – one the result of 60 or 70 years of cancer research, training and practice, the other of decades of total neglect of ME – coexist in the same moment in history. I've never experienced the inequality of what we must live everyday in such a direct way.
Read 4 tweets

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