Jennifer Brea🦒 Profile picture
Sep 12, 2018 17 tweets 3 min read Twitter logo Read on Twitter
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.
The greatest terror for me is not that they will find something horribly wrong or even that there is nothing they can do. It’s that I’ll be diagnosed with conversion disorder again.
I’ve been trying to figure out why that prospect bothers me so much. It wouldn’t leave me better or worse off than I already am. It wouldn’t alter the underlying biological facts of whatever is happening to me. It wouldn’t mean I had any less access to care than I already have.
I think it’s because stories of the innocent burned at the stake by a deafening mob in the grips of a collective delusion have always riveted and terrified me: stories like The Lottery, the Crucible, witch killings, lynchings, Galileo Galilei.
These are all extreme parables of a subtler (but frankly, often just as deadly) gaslighting we’ve all experienced as #pwme, the disabled, the chronically ill.
Insulin shock therapy was a collective mass delusion. Graded exercise therapy is a collective mass delusion. Most diagnoses of conversion disorder arise from a collective mass delusion.
Repeat the same story over and over again and it ceases to matter if it was ever true or what the evidence for it was in the first place. The sheer number of people who believe in it becomes self-reinforcing. (How else can we explain this?)…
And so in short, this shit really scares me. On a personal, individual level but also on a “I have looked into the dark heart of man” way.
There are areas of medicine that have serious ontological and epistemological problems that are rarely talked about. And the practical result is people die when they shouldn’t have to.
And one of the questions that has never been dealt with is whether the immaterial soul (and other concepts that are invisible, unknowable, beyond empirical science or measurement) still have a place in modern medicine.
In other words, if your tests come back normal, can I pronounce you in the grips of an “unnatural illness?” Or do I keep looking because I fundamentally believe that everything is measurable and knowable? That reality is empirical?
(No one could ever accuse me of being insufficiently abstract!)
But back to the beginning: I am being looked at in a way I never have been in my life. I wouldn’t be doing this unless I had hope it could help. But with that comes a great vulnerability, that my trust will be betrayed again, that it will all be just another dead end.
And that scares me because while I know I could have made a life out of where I was last year. My symptoms are now are unlivable. And up until now, in spite of everything I’ve experienced, I never predicated my life on feeling better.

• • •

Missing some Tweet in this thread? You can try to force a refresh

Keep Current with Jennifer Brea🦒

Jennifer Brea🦒 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!


Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

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 2, 2018
.@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.
Read 26 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

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!


0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy


3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!