Cee

Everyone is all pro ‘mental health’, until you actual live it and discover that a psychiatric diagnosis, however benign, will mean you are stripped of any credibility and will never be treated like a human being again in your healthcare.

@arianek @LisaPetsinis This also sounds a bit like bile acid malabsorption.

@LisaPetsinis Lifelong diarrhea, fat intolerance and malabsorption, and the genes for Celiac. I did a gluten challenge for testing in 2015 and it made my joints swell up and feel like someone was standing on my hands for weeks. Biopsy negative. Still undiagnosed.

How many people are being treated for low ferritin or iron deficiency without anyone asking why? If iron levels aren’t responding with supplements, ask whether celiac disease or another absorption issue could be part of the picture. Earlier testing can mean years less suffering‼️

@be_like_ice American Horror Story.

Neurodivergent gang what show have you watched from start to finish more than twice because it’s feels safe?

@byowife I’ve been living that moving life (whilst sick) too, and I miss having my own space and stuff. Hard to understand how families can let this happen to a family member. I hate that this is a thing.

extra pics from when i was still alive n pretty before i was homeless + moving for 2 years straight, preventably+permanently destroying my body+life which i’ll never live again w/o basic needs resources money med care or anyone to take care of me now ive ended up entirely Alone😀

happy #IWD from the bitch who been neglected abandoned abused traumatised + disabled so severely i lost Everything. twittr downfall means i’ll no longer be able to r**se the $$$$$ i needed to last year to literally survive. lwk life/death alone, so men w money pls hit my🅱️i🅾️😭❤️‍🩹

@JackieSeidel1 What are you listening to it on?

@AetherFox_ Yes indeed she does. The nicknames she gives the doctors are hilarious. The part I listened to today was absolutely horrifying. No humour. I relate to so much of her experience.

You will never hear accusations of somatising more than when doctors f*ck up on you.

@MerKat1984 It’s an alternate universe.

This actually pisses me off. For YEARS- I was experimented on, tortured &forcibly drugged- while I was also going deaf from tumors in my head that they insisted I "Invented"- This is despite MRIs and CTs. No Diagnosis? NO TREATMENT. They've been doing this for decades.

It’s awful because it actually is salvageable but we’re treated like a basket case and not given a chance. And then more stuff crops up because the original stuff wasn’t treated or was shoved in the ‘chronic’ waste bin. I also felt like my life was seen as disposable and sub-human. That level of bias is probably the most terrifying thing I’ve ever come up against in my life. Because it’s impervious to reason.

@AetherFox_ @ompsychiatrist ouch.yeah.❤️‍🩹 and when you become homeless after a lifetime of medical neglect, you realize how truly subhuman you are to the system. that your life was never worth saving to doctors, loved ones. and the consequences cripple you too much to continue seeking care that never existed

On the contrary, @ompsychiatrist It’s screaming in pain, daily, for 700 days straight, whilst your pelvic tissue is eaten alive and doctors tell you it’s all in your head. It’s running around the house alone, in agonising pain, pleading “I’m begging you please, I’m begging you please, please believe me,” to no-one in particular. It’s being abandoned by family. It’s being forced into homelessness and sleeping on friend’s couches. You’re university-educated. You were previously working. It’s feeling like your brain is damaged from the forging of repetitive, hardened neural pathways dedicated to keeping you alive in a system that ridiculed, humiliated, maimed, tortured, disabled, and threatened your life, over and over. Unnecessarily. Meaninglessly. It’s getting daily flashbacks to particular medical encounters which leave you violently shaking for 2 hours at a time. It’s being hypervigilant about medical encounters, playing them over in your head for signs of dismissal or deception. It’s never being alone in a medical appointment again. Ever. It’s avoiding appointments altogether and trying to self-treat at home, with varied results. It’s being unable to sleep the night before medical appointments. It’s knowing that you must plan your transport home from medical appointments so that it does not involve a train station. It’s knowing you need to be around someone else in the days following a medical appointment, to safeguard you. It’s taking 5 days to emotionally recover from medical encounters, weeks for particularly bad ones. It’s having to cover your eyes when passing by a particular hospital. It’s having to leave the room if you meet a doctor socially. It’s knowing trauma work is pointless, because your body is right - you’re not safe, and you still have to engage with the system that did this to you, and continues to. It’s mourning the opportunities that were taken from you every day. It’s knowing that one day the discrimination will kill you It’s thinking obsessively about justice, knowing you’re not going to get it. It’s iatrogenic PTSD.

@JackieSeidel1 I’ve actually got this somewhere! I need to read it. I remember flicking through a few pages and finding she balanced it with a macabre sort of humour quite well

@AetherFox_ Have you read “The Lady’s Handbook for her Mysterious Illness”? I’m halfway through listening. It’s very painful & relatable. And very well written. She’s seen so many “it’s in your head” doctors so far - who leave her in extreme pain & suffering & think they DID their job.

@drannamedical @InsularEntropy @MarjoriePLC @SuzanneMcgurn @CanadianPM @JustinTrudeau @adriandix @theJagmeetSingh @BadreNicolas @FDA @mcgillu @McGillOSS @RCMP @RCMPONT @cpsbc_ca @CMPAmembers @DrNancyOlivieri @FearLoathingBTX @jimgottstein The way they unionise. Familiar.

@InsularEntropy @MarjoriePLC @SuzanneMcgurn @CanadianPM @JustinTrudeau @adriandix @theJagmeetSingh @BadreNicolas @FDA @mcgillu @McGillOSS @RCMP @RCMPONT They lie, they threaten, they discredit … it’s been a decade of this since I started speaking up @cpsbc_ca @CMPAmembers @DrNancyOlivieri @FearLoathingBTX @jimgottstein

If you have a very extreme case of akathisia, you are better off leaving the US permanently than riding it out here. If you are dependent on the healthcare system to stay alive then you can be subjected to hospital policies that can almost ensure you will not survive akathisia.

@HardtMasonry @joaniej0243 And don’t forget changing your ‘diagnosis’ halfway through, or adding more. Because it’s such an exact science, of course.

Psychiatrist: "Your symptoms need to be managed. Here is a medication that will manage (blunt) your emotions and feelings rather than getting to the root cause. Now go talk to a therapist to see how they are working." Therapist: "Let's talk about your feelings and emotions to get to the root cause of these symptoms." Patient: "I don't feel anything anymore." Psychiatrist: "You must have that medication resistant strain we discovered by conducting zero lab tests, but rather invented out of thin air....like the other non biological diagnostic definitions for mental diseases. Try these meds and stop those other ones. We have no idea how the mixing and stopping of different meds affect the brains neurochemistry, but we will deny they are causing you more symptoms and harm." #MentalHealthAwareness #MentalHealthMatters #MentalHealth

@verysickyvicky @ompsychiatrist 🫂

@AetherFox_ @ompsychiatrist I cant even begin to put together anything that would even somewhat convey the ache...Im so so sorry...🫂

@NationalAnthemX Yeeep. When you see it you realise the system had already decided not to investigate or treat you at all and instead to manage/placate you, and it all makes sense.

@AetherFox_ FUCK. This is exactly what my fancy NYC doctor has been doing to me for near 2.5 yrs. But he can be exceedingly charming. I didn't feel the knife going into my ribs.

Yet Another Functional Disorder Rant Functional disorders are conceptual vehicles which serve as medicine’s unofficial resource allocation and professional indemnity insurance. Useful uselessness borne of a defensive, self-protective system. Their diagnosis is made without any measurable positive rule-in signs. They are unfalsifiable. This places them outside the realm of science. Look closely and you’ll notice they serve numerous useful functions - none of which are for the benefit of the patient: - Triage signalling (delay resource allocation) - Resource conservation (fob off onto allied health) - Defend against delayed diagnosis with arbitrary rule-in criteria (“it was reasonable to suppose patient’s symptoms were attributable to ~ made up disorder ~) - Defend against causation (pre-existing condition) - Defend against harm caused (patient amplification, reduce quantifiable damages) They are perfect - for insurance companies.

@NationalAnthemX @ompsychiatrist Thank you 🙏🏼 Yes it is broken and so utterly, utterly stupid.

@AetherFox_ @ompsychiatrist What a heart-wrenching situation. I'm so sorry. I identify w/ lots of what you said. I've internalized/repressed most of these feelings. Thank you for giving voice to them. You are 100% accurate. You are NOT in the least mistaken nor crazy. The system is broken. You're not wrong.

@ChronicallyTina @HenryFordHealth Out of curiosity, what sort of things have you found in their clinical notes?

I have even seen it where other doctors bully patients in retaliation for calling out their bad behavior. I'm looking at YOU @HenryFordHealth I encourage people to read their clinical notes. You would be amazed at the editorial commentary & biases. Again, looking at YOU HF.

@TSBurkhardt Same. I’ve been living with a sinus infection for a year because of exactly this.

@AetherFox_ like many things, people dont understand how real iatrogenic ptsd is until it happens to them ill try anything, techniques of various perhaps even dubious worth, and suffer harms from a full spectrum of treatable situations before putting myself in the crosshairs of a provider

@JanUrban12 A society cannot call itself civilised if it allows this sort of thing to happen, and then turns its head.

@AetherFox_ It was/is awful Cee! The eyes are useless when the mind is blind. It is as if they want to pretend none of this has/is happening? Women have/continue to be treated so badly in this Mesh Debacle.

Doctors tell you that you "never took care of your health."- Medical Gaslighting. It is incredibly invalidating to suffer systemic complications from a failed pelvic mesh implant only to have specialists dismiss your history. Victim Blaming like Denial often is a Standard of Care

@AnsamGroshong @Agape4_ever I agree it can’t be changed from within the system.

@Agape4_ever @AetherFox_ What we can do about it, I don't know. I suppose speaking up at least. Maybe someday change the laws? I don't think it can be changed from within the system. Ableism and patient abuse is similar to racism and religious and political extremism. People inside it don't see it.

Medicine consistently and flagrantly flips the script to blame the patient for its own failures. - Being socially isolated due to pain becomes you are in pain due to being socially isolated. - Deconditioning due to disability becomes you are disabled because you are deconditioned. - Depression or distress due to disease burden becomes you have disease burden because you are depressed or distressed. - Nerve damage due to untreated pain becomes you have pain because your nerves are too sensitive. And so on and so forth.

No, people have full blown, life-altering PTSD from their clinical encounters in which they are dismissed, bullied, humiliated, and taunted, over and over again, for their crime of fighting for their life back. They are repeatedly denigrated by being told it’s all in their head or ‘psycosomatisation’, despite factual contradiction. This is a profound form of gaslighting, epistemic invalidation and threat to sense of self and safety - by its very definition, traumatising. If doctors are unable to engage with patients without psychologically abusing them, they should remove themselves from medicine. If they don’t know the answer to something, they should say “I don’t know”, rather than inventing defamatory little narratives to blame the patient.

As a psychiatrist I see this regularly - patients with ME/CFS, Long COVID and hEDS who have real trauma from being dismissed and disbelieved by doctors for years. Their pain is genuine. I do have a problem though with the term 'clinician-associated traumatization' (here iatrogenic/Medical PTSD). It feels like it is making clinicians as 'the enemy'. A big part of the problem is the honest uncertainty these conditions create as they often lack clear biomarkers and are difficult to diagnose. We need more empathy and better training on both sides instead of blame.

@DigitalKitten5 It’s so circular and also just classic of toxic views about women and their bodies, that our experience of them is somehow secondary to their appearance

@AetherFox_ Yup. I gain a lot of weight AFTER getting sick and hitting perimenopause and finally being told it was time to grt off birth control… but apparently all of that can be u done if I … lose the weight I’ve been figjting to lose since getting sick… 🤔