Thread by @jenbrea

Doctors who follow me:

I’d love to write a small note to the doctors who diagnosed me with conversion disorder, told me I was too young to be sick, that I wasn’t really sick, that I didn’t need a wheelchair, that I would never end up bedbound,

That there was absolutely nothing wrong, that I should stay off the internet, that the symptoms I reported were impossible, that what I really needed was a psychologist, that the articles I brought them to read were irrelevant, that it was OK for my husband to divorce me,

that they were the ones who’d rescue me, that they’d have me up and skiing in no time, that what I really had was most certainly L,M,N,O,P,Q,R,S,T,U,V.

I’d like to write to the ones who translated the specificity of: “stabbing pain in the back of my head,” “aphasia,” “brain burning,” “spine burning,” “neck stiff,” “pressure in my head,” “pressure behind my eyes”

into “headache,” “headache,” “headache,” “headache,” “headache,” “headache” over and over again, and told me to take an aspirin.

That it took eight years but that I was diagnosed and I did have four surgeries and that I am very, very well, and that their textbooks will *always* be incomplete.

And that if their forefathers hadn’t told our grandmothers some version of the BS above, I might never have needed to wait eight years, might never have needed to have surgery at all

And if they could just please stop doing all those things, maybe no one will ever have to wait this long again.

Maybe more of my friends would still be alive.

How do I say that sweetly?

If you’re a healthcare provider and you happen to see this thread, the syndromic diagnoses were: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Postural Orthostatic Tachychardia, Mast Cell Activation Syndrome. I talked about the experience here: ted.com/talks/jen_brea…

The structural diagnoses were: craniocervical instability, tethered cord syndrome, intracranial hypertension and diverticuli in my spine. All these diagnoses are more frequently seen in patients with connective tissue disorders.

(I do not qualify for any HCTD dx by a long shot but think I may have acquired connective tissue problems + a more subtle genetic predisposition.)

Surgically addressing the structural diagnoses with a blood patch, C0-C2 fusion, and tethered cord release completely resolved my ME and POTS and significantly improved my MCAS. I describe that all here: medium.com/@jenbrea/cci-t…

You can watch the first part of my story, here:
netflix.com/title/80168300… and receive CME credit here: unrest.film/cme