Marc

FND patient. Looking to build my own and others’ understanding of this illness.

[Marc @FndMarc]

A good thread about a good thread — when trying to explain my condition to people asking about it, I sometimes reach for the software/hardware analogy, but as often I end up basically just saying “my brain doesn’t work.” Sorry brain, I’m sure you’re trying.

[FND Portal - is no longer on X @FndPortal]

Yeah, it’s a good question.

A few thoughts on this…

[Tom Plender @TomPlender]

1/Something that is rarely discussed in the medical literature around #FND is the mental health impact on a patient of being repeatedly told they have repressed psychological trauma when in fact they don't.

[Tom Plender @TomPlender]

What you need to know about FND

1/FND is a problem to do with the way the brain and nervous system sends and receives signals

[Marc @FndMarc]

@FndPortal That’s really interesting ! I’ve never had synesthesia but one of the more peculiar mysteries of FND for me has been the way symptoms interact with music — I love classical music but like a dantean punishment my body seems to turn it into pain and various movement problems.

[Marc @FndMarc]

@FndPortal To me it marks worrying conspiratorial thinking — that doctors are spending their time posing as patients in an effort to spread (so says the conspiracist) false information (with the end goal of…??)

[Marc @FndMarc]

I finally found a good moment to read through this — it’a fantastic, please read if you haven’t yet.

[FND Portal - is no longer on X @FndPortal]

It’s finally out! Here’s my deep-dive essay on the mysterious Functional Neurological Disorder: the perils of medical dismissal, the profound links between brain + body, and the long, long shadow of Hysteria.

🧵

https://t.co/za75nmP9H5

[Marc @FndMarc]

@FndPortal Strong third-place showing for thirst traps though!

[Marc @FndMarc]

@DevonOship Also staring at the ceiling despondently for a few weeks on disability coverage is how I got rid of some (emphasis, some) of my FND symptoms. Do recommend at least trying it 😂

[Marc @FndMarc]

@DevonOship I think i’ve heard of typical disability temporary insurance coverage being used for burnout here, without it being specifically identified in the policy as something that’s covered. Just need a doctor to provide confirmation that the person can’t work, etc.

[Marc @FndMarc]

@FndPortal Of course many people are in exactly that position! And are primed to reject any new information as illegitimate.

[Marc @FndMarc]

@FndPortal I’m reminded, there’s a very interesting Louise Bourgeois sculpture that I think interrogates / provokes some of these ideas (not without being problematic .. the headlessness of the figure sends a message): https://t.co/0iVJsRrFoM (the link is MOMA but I saw it at the NGC)

[Marc @FndMarc]

@FndPortal As that relates to FND.. well, I don’t have a uterus but as a gay man there’ve been lots of ways in which my way of being is seen as « feminine » or « unmanly »… I often wonder whether the gendered history ends up hitting cis straight men with FND quite differently.

[Marc @FndMarc]

@FndPortal Honest to goodness the first thing my mind does is just translate it to « uterus ». I find it difficult to dissociate the many other connotations and meanings of the word from its etymology.

[Marc @FndMarc]

@FndPortal I’m struggling with what it would look like to do that — the hard problem of consciousness is difficult and important philosophically, but doesn’t the science/medicine necessarily operate on the basis of materialism? What does any philosophical theory of mind do for patients?

[Marc @FndMarc]

@FndPortal What if it’s just been microwaves for all of us this whole time though? (People love asking me what caused my FND and it would be so much *easier* to shrug and say « microwaves »)

[Marc @FndMarc]

I’m sure I’m not the only person for whom the near-totality of my reaction stems from reading the Bell Jar.

[FND Portal - is no longer on X @FndPortal]

Honestly it’s super simple: whatever the possible benefits of ECT might be, most people have a very understandable fear of having their brain electrocuted.

It’s literally called electroconvulsive therapy, it sounds like an obviously terrible thing no one should ever do!

[Marc @FndMarc]

@DevonOship How does that work? What are the categories and eligibility criteria? I’m so confused.

[Marc @FndMarc]

@FndPortal Thank you! Very interesting that there is that divergence between philosophy and science…

[Marc @FndMarc]

@FndPortal Have you encountered anyone serious/credible still looking at this from a mind/body dualist perspective? Where I guess the meaning of non-organic would be that the fundamental cause is in the mind which is separate or distinct from the physical body?

[Tim Nicholson @Tim_R_Nicholson]

Giving this another boost...@susannah_pick is doing 57 - yes FIFTY SEVEN!! - km run for @FNDHopeUK tomorrow..please donate here 👇

@FNDSociety @FNDHope @FndPortal @ConnectFnd @FndLifewith @FndRecovery @FndMarc @FNDDimensions @FNDAction @jonstoneneuro @PerezMGHLab @AlanCarson15