The movement to empower people with hallucinations and delusions
May 27, 2022 1:30 PM   Subscribe

“Doctors Gave Her Antipsychotics. She Decided to Live With Her Voices.” What psychiatry calls psychosis, the Hearing Voices Movement calls nonconsensus realities. It provides support groups for people with hallucinations and is part of an effort to reform how the mental health field approaches severe psychiatric conditions.

The article profiles Caroline Mazel-Carlton, who first began hearing voices in childhood. As she got older, she was medicated with a dizzying array of psychotropic drugs, including antipsychotics, antidepressants, mood stabilizers, and benzodiazepine tranquilizers. The medications worked poorly for her and had bad side-effects:
“The antipsychotics caused obesity — 50 pounds of new weight — and the feeling that she was losing control of her forearms and her neck. Her hands quivered and seemed to want to flap-paddle the air. To the isolation caused by the difference of her mind, the drugs added isolation from severe side effects. Her agitation and self-disgust, her terror of being barely human, drove her to twist clusters of her hair around her fingers, to yank hard. Patches of bare scalp crept into view. Classmates taunted, asking why she shook and was going bald, calling her ‘fat-ass’ and ‘crackhead.’
Mazel-Carlton opted to stop taking the medications, and she became active in the Hearing Voices movement. She now has an office and trains group leaders around the country.

The article also places Mazel-Carlton’s experiences into a larger historical perspective about the rise of biological psychiatry and the recent indications that psychopharmacology has not lived up to its promises – and may in fact be harmful in some cases:
“…the evidence that the medications improve outcomes is murky. And it is countered by other studies suggesting that maintenance on the drugs may actually worsen outcomes and even cause brain atrophy, though these findings have been debated. The area is devoid of conclusive science, a failure that is a prominent part of a wider problem in biomedical psychiatry: its lack of progress in treating serious conditions, or even precisely diagnosing and comprehending them. “Something has gone wrong in contemporary academic and clinical psychiatry,” a 2019 lead opinion piece in The New England Journal of Medicine stated. “We are facing the stark limitations of biologic treatments,” it argued. “There is no comprehensive biologic understanding of either the causes or the treatments of psychiatric disorders.”
Journalist/author Robert Whitaker has been making this case for years, though his work is not referenced explicitly in the article.

So how is the psychiatric establishment responding to the “Hearing Voices” movement? Reactions are mixed, at best. But at least one psychiatrist/blogger has some good things to say about it: "I think there’s room for the Hearing Voices movement and things like it in the mental health tent – as long as they don’t try to kick other people out of the tent and say their way is the one-size-fits-all solution for everyone.” (The excerpted paragraph comes from this blog post, which is long but very well written and is at least as interesting as the NY Times article itself).
posted by akk2014 (62 comments total) 44 users marked this as a favorite
A non-paywalled version of the article is available through
posted by akk2014 at 1:33 PM on May 27, 2022 [2 favorites]

Can't we get people this kind of support and meds? Surely having kind, nonjudgmental support from peers and facilitators could only help improve what is indeed very challenging compliance. But dispensing with medication seems like these groups are already somewhat self-selected for people who at least understand that their thought patterns are distressing to others and want to live more stably. I don't think just dropping someone like the person who tragically killed Michelle Go (after twenty years in and out of hospitals and jails) into a peer support group would be sufficient.
posted by praemunire at 1:35 PM on May 27, 2022 [12 favorites]

I have a great deal of personal knowledge and experience with this subject and I'm not going to share any of it here.
I strongly advise anyone in a similar position to do the same. You are not going to get a fair hearing on this site.
posted by thatwhichfalls at 2:26 PM on May 27, 2022 [44 favorites]

I agree that there are probably lots of people for whom it wouldn't be sufficient. I admit my first response to hearing this was to see all the ways this could go wrong.

But I do feel like a lot of psychiatrists are fairly dismissive of the negative side effects these medications can cause, so it doesn't surprise me that some patients would decide they've had enough and are looking for another way.

My primary mental health diagnosis is ADHD/CPTSD, but in the many years it took me to get these diagnoses, I got a lot of different meds shoved down my throat, and the antipsychotics were some of the worst. (I wasn't even psychotic or anywhere close. The number of psychiatrists who quickly reach for antipsychotics in off-label uses and think nothing of it is a whole other FPP in and of itself.)

I feel like a lot of modern psychiatry has been shaped by this desire to medicalize everything and take on the guise of a very concrete, scientifically founded discipline. Hence, the now-debunked idea that SSRIs correct a serotonin imbalance in the brain. And yet, lots of people still cite that claim.

I don't know that this here is the answer, but I really can sympathize with it seeming like an appealing option. For myself, I've definitely come around to just saying, okay I'd rather never sleep again then go back on seroquel or anything like it. I'd rather put up with these horrific many hours long anxiety attacks/meltdowns that are ruining my life than become a zombie who devours every carb in sight on abilify. There's basically nothing that could convince me to try anything in the antipsychotic group ever again.

We just really need better answers and better options, better mental health support, more psychiatrists who don't just shove pills down people's throats and call it a day. But you know, we also live in the Darkest Timeline, so i'm not particularly optimistic on any of these counts.
posted by litera scripta manet at 2:33 PM on May 27, 2022 [24 favorites]

I work in the field of what this article called court ordered medication. Some of this article is right and a lot of it is wrong. It’s not common to prescribe multiple antipsychotics. Hearing voices, alone, is not a problem that gets you involved with a court. Yes psychotropic medication can cause side effects, no not everyone gets all of them. Yes Eli Lily hid evidence of metabolic effects of Zyprexa, no that does not mean that everyone who takes it gets diabetes. The woman profiled here is very functional and this is a good approach for her. I work with several violent people who are only non-violent when they take meds, refuse all non-medication based therapy, and swear they will stop taking medication the moment they leave the hospital. For them, and for everyone near them, medication is a good approach. I could go on.
posted by kerf at 2:34 PM on May 27, 2022 [34 favorites]

I first read about the Hearing Voices Network in Muses, Madmen, and Prophets. It was a perspective I hadn't encountered before, and I was glad to have another way to think about the subject.
posted by clawsoon at 2:55 PM on May 27, 2022 [5 favorites]

It’s not common to prescribe multiple antipsychotics.

You are mistaken. I am afraid of a psych system where that mistake is conventional belief. I am not wrong to be afraid.
posted by traveler_ at 3:00 PM on May 27, 2022 [27 favorites]

One thing that I find especially interesting in the article is the alternative options for higher level of care that don't involve actual inpatient hospitalization.

As someone who has a long, messy trauma history, and who has spent a lot of my life suffering with severe suicidal ideation, it's horrible to be in the position to decide between, "do I let them commit me, knowing that it's going to re-traumatize me, and not really help at all, but at least will keep me alive?" or "do i just keep my mouth shut, and hope that I can white knuckle it?"

I've been fortunate to have a therapist who I can frankly discuss my suicidal ideation without him hospitalizing me, and who understands that hospitalization for me would need to be an absolute last resort. I also feel this way about detox.

There are of course residential treatment facilities, but I've never had insurance that would pay for them, many don't even take insurance, and they are absurdly expensive. Like, cost of one year of private college expensive in some cases. Plus, the ones I spoke to would never consider taking me b/c I had a history of self injury.

But honestly, I wish there were better options. B/c for me personally, I know I don't need my shoe laces taken away, my phone confiscated, whatever. Sometimes i just need a bit more support. And unless you've been a patient in an inpatient ward, I think it's hard to imagine just how dehumanizing, just how punitiive, just how traumatizing that experience can be. And I was relatively fortunate! I was in an inpatient ward at one of the best hospitals in the country. (FWIW, there were no psychotic patients on that ward - it was mainly for mood disorders/suicidality.)
posted by litera scripta manet at 3:16 PM on May 27, 2022 [37 favorites]

Didn't John Nash, of the Nobel and movie fame, do something similar? If I recall, he also made a decision to live with those voices rather than medicate.
posted by indianbadger1 at 3:17 PM on May 27, 2022 [2 favorites]

But those ways tend to be things like “I wrote a blog that was condemned by the New York Times”, and “I’m in a group which many people consider a cult” - not the right type of quirky for job interviews.
I thought Scott Alexander's most interesting quirk was his plan to secretly spread racist ideas.
posted by clawsoon at 3:22 PM on May 27, 2022 [13 favorites]

One last thought on this topic: When medication was first suggested to me, I remember being really resistant. But then when I finally agreed to try it, I remember how hopeful I felt. Maybe this will fix me, I thought. Maybe this will work where previous therapies have failed.

It is so tantalizingly simple. Just take a pill and feel better! Until you realize the side effects from the first pill, and then they try another, and another, and maybe you're less depressed but now you don't sleep, so take something for that, but now you're too sedated and then your libido just up and died, so they put you on a more activating medication, but oh wait, now you're anxious so they give you a benzo prn, etc, etc.

And of course, eventually you realize none of this is ever that simple. And when I finally realized that the root of my issue is trauma, and that while meds can be prescribed, therapy is really the only thing that can sort out the trauma, I was relieved.

And I believe in science, I believe in medicine, I'm not even against psych meds per se. After all, my stimulant medication for ADHD was literally life changing. I still had to do behavioral changes, but it was in many ways the silver bullet. And I'm extraordinarily lucky that i found a stimulant that has no significant side effects in the years i've taken it.

I don't know what my point is, other than I really see both sides of this, and i feel like this is just incredibly complicated. And if peer run groups and more compassionate, patient-focused therapeutic options become available as a result, I think that's ultimately for the good.
posted by litera scripta manet at 3:22 PM on May 27, 2022 [36 favorites]

I was friends with a super nice guy who heard voices. He had meds that controlled those and some other mental issues. Eventually he stopped going to his psych and went off his meds.

So you don't actually know whether it was the lack of meds or the lack of a good doctor (who knows if the meds or the doctor were any good or tolerable?) or something else entirely that caused his behavior to turn violent. Your conclusion that meds are the answer doesn't follow.
posted by tiny frying pan at 3:29 PM on May 27, 2022 [14 favorites]

But I do feel like a lot of psychiatrists are fairly dismissive of the negative side effects these medications can cause, so it doesn't surprise me that some patients would decide they've had enough and are looking for another way.

100% fair.
posted by praemunire at 3:38 PM on May 27, 2022 [2 favorites]

@indianbader1: Yes, mathematician John Nash stopped taking psych drugs in 1970 (he died in 2015) and recovered without them. I don't think he continued to hear voices, although I'm not certain. Interestingly (and disturbingly), the movie A Beautiful Mind erroneously portrayed him as being helped by "newer antipsychotics". Some speculate that the error was deliberately introduced into the movie as a result of pressure from the mental-health industry.
posted by akk2014 at 3:40 PM on May 27, 2022 [9 favorites]

My experience with this is all second hand, but what ended up working best for my friend was finding a medication and dosage that was just effective enough (without fully alleviating symptoms) while having tolerable side effects. It was not an easy road to get a diagnosis, and then find an effective but tolerable treatment. I can absolutely see that for some people, no medication is the best option, while for others, it really isn't an option at all.

And also, just an OMG YES to those pointing out the traumatic nature of being an inpatient in a psychiatric ward. I got to see that second hand as well, multiple times, with the same friend.
posted by FishBike at 3:48 PM on May 27, 2022 [7 favorites]

I recently went to a dr for an ear infection after the first round of antibiotics didn't work. He spent the whole time talking about my weight and blood pressure. Then said goodbye. I asked about the ear infection and he suggested a hot wash cloth.

I think its a healthcare industry problem and this is another example of a broken system.

Ive worked housing people woth severe health and mental health issues for 14 years and can only say that different things work for different people, but everyone needs to be heard and respected and supported in their decisions as they find what works for them.
posted by kittensofthenight at 3:54 PM on May 27, 2022 [32 favorites]

Somewhat tangentially, I'm reminded of this comment from thatwhichfalls in a previously about the seeing of clockwork elves. "Ever since childhood, she told me, as she fell asleep little men would appear in a pool of light..."
posted by clawsoon at 4:09 PM on May 27, 2022 [3 favorites]

different things work for different people, but everyone needs to be heard and respected and supported in their decisions

This is true, to a point. I've known people who hear voices who were totally fine once they realized that it wasn't "real." Their behavior might strike one as a little odd, but they had no problem functioning in society. Sometimes it took being on meds for a while to get there, sometimes the mere understanding of what was happening was enough on its own.

I've known other people who simply couldn't live anything approaching a normal life without meds and when they refused to take them serious shit that quite reasonably involved cops and courts inevitably happened. Support and understanding doesn't do much for some people.

I wish I knew a way to tell who was going to fall into which category before the fact because the antipsychotics have serious side effects. Sometimes tolerable for some people, but still significant enough that it would be better not to have to take them if at all possible.
posted by wierdo at 4:44 PM on May 27, 2022 [16 favorites]

I'm now starting to think I might have imagine it, because I'm not finding any corroboration online, but I seem to recall reading a while back that Brian Wilson had also decided to try to deal with his auditory hallucinations without medication. Maybe I'm confusing him with someone else.

I've had my own struggles with mental illness, and it's a very daunting thing to realize how much psychiatric medication is just a series of shots in the dark. And in the U.S., insurance coverage for mental illness is even worse than for other conditions. I've been in and out of therapy since my teens, and I have never had a therapist who didn't eventually stop accepting whatever insurance I had at the moment. And the therapists themselves... I don't want to write a novel so I'll just say that some were a lot better than others, and I wouldn't let some of them treat my worst enemy.

The linked story is absolutely fascinating. Admitting how much we don;t know, and listening more carefully to patients, is a great place to start any medical research.
posted by The Underpants Monster at 4:51 PM on May 27, 2022 [7 favorites]

My initial experience with hearing voices was at or near the beginning of 3rd grade when I was paging through a Classic Comics rendition of The Prisoner of Zenda. I thought I’d left the radio on or that I was hearing someone outside the window, but it soon became clear I had finally learned to read, albeit unconsciously somehow.

Since then, whenever I’m around printed matter I’ll intermittently hear a voice saying some of the printed words. If I walk down an aisle in a bookstore I’ll hear the titles of some of the books on the shelves. I’m not really able to turn this off, and once in my favorite used bookstore another customer mistook me for an employee and asked me if we carried a certain book. I remembered hearing the title and was able to guide him to it.

When one of my autoimmune issues is flaring up, I hear unintelligible voices in white noise from fans and in static, and strongly rhythmic noise often turns into a repeating fully articulated phrase.

None of this is too upsetting, but when I was in the hospital being treated for pernicious anemia I developed frank delusions within 20 minutes of drinking a barium contrast dye for a scan which was a condition my hematologist set for releasing me because he wanted to be sure I didn’t have occult intestinal bleeding. I had initially refused and was in the process of getting up to walk out, but my partner and my most recent ex stood on opposite sides of the bed and literally pushed me back down and I ended up capitulating. I suffered a series of delusions over the next four days, which were the most awful days of my entire life that I can remember. But I didn’t hear any voices during that time.

For years I thought those delusions were brought on by a celiac disease driven response to gluten in the contrast dye, but now I think I had a bog standard case of ICU delirium caused by absorption of barium through a small intestine made leaky by scar tissue resulting from ignoring years of symptoms of celiac disease.

I wouldn’t have taken antipsychotics to be rid of the delusions, but I wouldn’t have been able to live with them either.
posted by jamjam at 5:05 PM on May 27, 2022 [22 favorites]

The problems with non-pharmacological psychiatric/psychological treatments are just as serious, and just as open to misuse and abuse. So I wouldn't look to that for too many answers either.

I am increasingly wondering if our current concept of mental illness itself is more often than not actively preventing understanding and effective treatments.
posted by Pouteria at 6:32 PM on May 27, 2022 [4 favorites]

Thanks for sharing that Jamjam, deeply appreciated.
posted by Brandon Blatcher at 6:50 PM on May 27, 2022 [2 favorites]

mathematician John Nash stopped taking psych drugs in 1970 (he died in 2015) and recovered without them. I don't think he continued to hear voices, although I'm not certain

I believe he said, essentially, that most of his symptoms ultimately improved on their own as he got older. The line between “episodic” and “permanent” mental illness seems to be a little blurrier than people imagine (or than some professionals seem to default to expecting).

but I seem to recall reading a while back that Brian Wilson had also decided to try to deal with his auditory hallucinations without medication

I seem to remember something like that about Roky Erickson. Wilson famously suffered from overmedication during his time with Eugene Landy, but I’m fairly sure he talked about some medication being helpful for him later and beyond that I have no idea.
posted by atoxyl at 7:23 PM on May 27, 2022 [4 favorites]

This article reminded me of the invention of homeopathy. It came about in the 18th and early 19th century, when mercury, bloodletting, and unwashed instruments were the best you could expect from a doctor, and you’d pay dearly for it. People were desperate for something else. Water held near some plants would not make you suffer or kill you outright, and if what you had could be recovered from, you might even manage to do it, assuming you had enough supportive care.

Mental health care has been so bad to these people that they are choosing to take their chances with hope. It’s hard to be angry with them for it.
posted by Countess Elena at 7:33 PM on May 27, 2022 [15 favorites]

>It’s not common to prescribe multiple antipsychotics.

You are mistaken. [link]

I'm not sure it's that clear. The linked paper is out of England. I don't have access to it but it seems a reasonable assumption that the data comes from the NHS. The NHS is its own little world, so I'm not sure we want to draw general conclusions.

More data required I think.
posted by Tell Me No Lies at 9:55 PM on May 27, 2022 [1 favorite]

It’s not that rare in practice, but does seem to be pretty widely discouraged in contemporary guidelines by psychiatric organizations.
posted by atoxyl at 10:17 PM on May 27, 2022 [1 favorite]

On a personal level I hate articles like this. It is only by sheer luck that my niece hasn't hurt someone yet (people who are having frightening hallucinations should not be driving). The cycle goes:
  1. She decides to stop taking her meds.
  2. She is found wandering in a dissociative state.
  3. Police pick her up. She is non-white in the United States, so god only knows when that's going to go wrong.
  4. Mental health crisis professionals get her stabilized and release her.
  5. She figures out if she still has a job and an apartment. If not, it's back to live with the parents.
  6. She reluctantly decides to restart her meds.
  7. See step #1.
I think it's great that this movement is having a resurgence and I expect a lot of people will benefit from it, but pretty much anything that can be read to say "Hey, yes, you don't really need to take those meds" fills me with dread. It seems like an irresponsible thing to publish until there are some significant studies that draw out the limitations.
posted by Tell Me No Lies at 10:25 PM on May 27, 2022 [27 favorites]

Zooming out a bit, the trouble is that people's mental health needs are drastically different. That means any impersonal advice is potentially dangerous. For any piece of impersonal mental health advice, I can find people it will harm because it's not the right advice for them. This includes both "stay on your meds" and "go off your meds," as well as lots of more nuanced advice. Even on basic stuff like sleep and exercise, different people need different things; there might be a baseline amount that helps the average patient, but if I'm not the average patient then that fact does me no good.

I'm not sure what the right thing to do about this is, given the flaws in the US health care system. In a better world, it would be obvious: help patients get access to *personalized* advice, and put providers in a position where they can respect patients' autonomy so that seeking personalized advice isn't so dangerous for people with scary, punishable symptoms. But if we can't do those things (and in the current US health care system, we often can't), then putting out a lot of perspectives and hoping people can discern what's right for them seems better than hiding information for fear it will inspire bad decisions.

(I take an antipsychotic and I've been inpatient a bunch of times, but I don't hear voices.)
posted by nebulawindphone at 10:58 PM on May 27, 2022 [27 favorites]

Is it just me, or is the NYT's framing weirdly decontextualized and depoliticized? Like, you'd never know from reading this profile that there have been plenty of other movements that challenged psychiatric understandings of mental illness, often by applying a political analysis (anti-psychiatry, Mad Pride, etc.). Seems like there would be lessons to learn from those earlier movements - from their failures and mistakes, if nothing else.
posted by Gerald Bostock at 11:08 PM on May 27, 2022 [14 favorites]

Put even more simply: empowerment is good for any patient, and access to diverse views is empowering. If someone seems "impossible to help" or "resistant to the truth," it's because the whole world would have to be very different for them to be actually empowered. Maybe for some people the world is too unlikely to change in the ways they need. Maybe, sadly, disempowering those patients is a safer bet than improving the world. But I can hardly blame the people who are still quixotically rooting for empowerment, and contributing to the mishmash of conflicting perspectives that feed it.

(Again, I take an antipsychotic, and I'm not trying to equate "empowerment" with "everyone naively going off their meds" or anything like that.)
posted by nebulawindphone at 11:10 PM on May 27, 2022 [17 favorites]

You are not going to get a fair hearing on this site.

Yeah. Watching Metafilter fuck up its response to ableism in exactly the same way it fucked up about misogyny, racism, transphobia, etc is pretty dispiriting. Mainly because it shows how naïve I still am: when someone shows you who they are, believe them.
posted by howfar at 1:54 AM on May 28, 2022 [13 favorites]

Nobody is obligated to answer, of course, and I hate how stupid I feel for not being able to recognize it without help, but if anybody is willing to help me understand how this conversation is going badly and it wouldn't be too stressful for you to do so, I would welcome a MeMail. This topic is extremely important to me for reasons I talked about above, and I would really, really hate to be the one making the discussion worse.
posted by The Underpants Monster at 2:15 AM on May 28, 2022 [13 favorites]

I'm not sure I'm the person to take on the ableist label but I can talk about stigma a bit and a few things from this thread.

First I want to acknowledge though, that there's a lot of lived experience in this thread from multiple angles and people who have directly experienced the fear for people who are (or seem) to be experiencing a break with reality or worked with particular populations or have experienced the results of violence also have perspectives that, while in my mind over-represented in discourse, are also valuable. I have worked (as an admin) with a population that included people who had committed violent acts and in one case, I was caught between my desk and the door by one who had a pipe wrench in his hand until we got the situation deescalated, and it is really scary.

Secondly, my lived experience does and does not relate to traditional psychosis because it's a different thing, although it does relate.

So everything from here is going to relate to my kind of voice, which may or may not be other people's kinds of voices.

The very title of this thread - "hallucinations and delusions" - is an ableist or maybe prescriptivist view.

I hear voices all the time. In my case those voices are both outside of me, myself, and I hear them in space and as auditory voices - but they are not generally foreign either - we are a collective. "My voices," which I call people (and a lot of people call alters, but we don't love that term) don't just talk to me.

They have friends, make spreadsheets at work, create gardens, and go for walks. (In fact one of them selected the range of activities listed there.)

Perhaps more significantly, they often have more information about reality than I do - information about my childhood, information about how things work, able to speak at length on Euripides during my English Lit class when I don't remember reading Hippolytus.

In fact, shocking twist alert!! I am a voice in their heads.

I am not the original person and if one really pressed me hard, I would have trouble explaining my origin story so to speak. Not because I am not aware of it, but because I am not sure where I sit on believing it myself.

On the one hand, it's "child under trauma creates a construct." (For the purpose of this discussion, let's take my name literally and say this child makes up a bog-standard red-hair warrior queen.) I'm okay with that. It makes sense, the red hair (which I don't actually have btw) is embarrassingly standard, the Jungian archetype holds, and my therapist years ago made all the relevant points that Encanto makes in its delightful "Surface Pressure."

As a rational person, I think this is a great way to understand my experience and still make my kids' lunches.

But...the bog-standard wounded child start is...still not how I, as the thing-made-up, actually experienced it. My version would probably start "I came to on the battlefield..." But I'm a rational person, so it's like - what battlefield? What the fuck? How come I don't have great abs therefore???

But I'm comfortable with this because...I basically have to believe 10 impossible things a day to get past the various teas in my cupboard. Teas I don't like but other people do. If I throw them out (as I have done in my early 20s), then others will throw out (as they did in my 20s) my Pet Shop Boys collection and so it is just easier and healthier, frankly, to leave the teas and allow them to get drunk by the non-existent other people in my head. One of whom is currently annoyed I am typing this rather than taking her lavender-chocolate tea out to the backyard to weed her raised bed garden before I go to work for a couple of hours.

As Descartes pointed out, whether my experience of I is true, or I am deluded into it, I exist either way, either as the subject of the experience or the object of delusion. I don't think I'm a hallucination.

Why did I write all this out?

Because I'm deadly serious about being the hallucination. If, in 1999, the person (T.) who was going to therapy had taken anti-psychotics instead of writing a journal to me, I'm not sure what my existence would have been. Or hers.

But this article and this discussion takes as its base that T's experience was "broken" and there was a danger that I would think I was an actual warrior queen and pick up I guess a machete and attack people. And there are people who tragically do that, so who am I to talk? In the face of that fear and stigma? What if by my VERY EXISTENCE and my dread functionality I somehow cause someone somewhere to go off their meds and kill people?

Well...see...that's the thing. If that's all we can talk about, we can't talk about me and the millions - millions, do you know DID is globally diagnosed in 1.5% of the population? - of people who hear voices and not only aren't going to kill anyone but maybe we are equally, profoundly, and in an okay way human.

Okay that's a lot of words and very personally revealing but I hope they provide some perspective.

I don't actually know where I fall on Hearing Voices, because their experience may or may not be like mine, but I have belonged to communities of multiples which have run the gamut (blame those who need help! Take meds! Don't take meds! Believe in trauma! Don't believe in trauma!) and I think...they can be helpful or not, just like lots of groups of people.

The search for something that will make everyone in the same is probably the garbage we need to leave along the way. But it is indeed hard to balance that when someone you know is clearly not okay regardless. Because if the only way you know to "be okay" is to not hear voices, you are going to reach for that first.
posted by warriorqueen at 5:12 AM on May 28, 2022 [111 favorites]

Thank you for telling your story, warriorqueen.

I think a big way threads like this can go bad is too many people coming in with second hand, "I knew a person who went off their meds and this bad thing happened," which implicitly suggests that people choosing to manage and navigate their interior landscape without meds are making a potentially-deadly mistake.

I have a chronic condition—I got a headache in 1993 and i hasn't gone away yet. State-of-the-art treatment for people like me is a game of trial-and-error via both meds developed to treat headaches, and many many other meds from many classes being used off-label because in years of experimenting, they've been found to be sometimes helpful for some people. The most effective treatment for chronic headaches is Botox—my neurologist says that as many as 80% of people who try it get some relief. This treatment was discovered because people who were using Botox cosmetically noticed a change in their headaches.

It's a frustrating and exhausting process. Things work for awhile, then stop working. Something works, but the side effects are intolerable. You enter a new stage of life—for me it was perimenopause—and everything changes yet again.

I stopped even trying to treat my headache for awhile in my early 30s because I was so discouraged, and because the doctors I was seeing were clearly getting frustrated with me for not being helped by their treatment. Eventually, I found a neurologist specializing in headache treatment who is not only very good at the neurology part of his job, but patient and encouraging.

That's off-topic, except that I have a couple of young adult children who have been/are on the same kind of trial-and-error medication roulette, but with psych meds. My oldest, who is 27, is very stable after years of concentrated effort, and is in fact going back to college to finish their BA, which is very exciting. My 21yo haas been treatment-resistant until very recently, and although they are finally in a place where they are able to participate in treatment, and have found good-enough practitioners to work with, they are still in a very dark place from which it is very difficult for them to see a better future.

Both of these two have dissociative disorders. My oldest experiences this as having several distinct persons who are different ages and have different personalities. Getting this diagnosis has been really helpful for them in terms of self-understanding; it has been empowering.

My 21yo has something more like a committee, who can be consulted. They haven't talked to me a whole lot about it.

I watched a short video the other day, I think at Vox but I can't find it now. It talked about how the "fight or flight" response actually has a third option: freeze. Children who are abused don't have access to fight or flight, so they freeze, and the mechanisms of this response include a sense of separating the self from what's happening. (My oldest, who is adopted, suffered severe abuse during childhood. The 21yo, who is my birth child, was not abused but had other traumatic experiences we were not able to protect her from.)

It reminded me that, when I was young and living in an abusive home, I often had the experience of feeling like I was watching a movie of something rather than experiencing it, most usually when I was having a good time with friends. My parents were masters at denying my reality and independent selfhood, and I think I experienced this form of dissociation at times when the reality I was living was at odds with the one my parents were imposing on me, and me being happy, well-liked, and successful were those times.

I can remember, too, that as a young adult, I often felt that something hadn't actually happened until I had told someone about it (and, implicitly, been believed).

I've had very effective treatment, both with therapy and, at times, meds. I don't experience these kinds of dissociation any more. But I remember what it was like.

When one of my autoimmune issues is flaring up, I hear unintelligible voices in white noise from fans and in static, and strongly rhythmic noise often turns into a repeating fully articulated phrase.

Because of my headache, I have had a zillion MRIs over the years, and they often talk to me. I remember also getting kind of freaked out one sleep-deprived night, up late in my kitchen, when my breast pump did the same thing. I was very tired; normally this doesn't bother me, so much as I just notice it.
posted by Well I never at 7:56 AM on May 28, 2022 [22 favorites]

A quick disclaimer: please take everything I’m about to say with a grain of salt as I’m reciting a bunch of information from memory. I think I’ve remembered it all well enough to recite here, but it comes from a wide variety of “I’m studying psychology and it’s too slow so let’s read a bunch of research on subjects I’m curious about” over the last few years. I have no formal training outside of a few undergrad psych courses and unfettered access to research papers.

This is really interesting. I am especially curious about those mentioned like John Nash who seem to have overcome/manage their psychosis and delusions. Are they a model for the non-medication treatment of these disorders, or did they have a course of their illness that was self limiting enough that they improved and attributed the improvement to their own ability to handle their symptoms. Nash apparently believed this.

Also of interest is that those who are schizophrenic generally have lower white matter volume than controls. I’m reciting from memory, so I don’t know if there is anything that looks at medicated vs unmedicated. My assumption is if you are in the medical system and having an mri, you are likely to be medicated. Thus curious if we know the cause and effect; ie could medication be causing the decrease in white matter?

The topic is especially tricky though as psychosis tends to worsen the longer an episode happens and the more often an episode happens, and thus the reason that doctors are so quick to medicate- it isn’t, as implied in the article, to make it easier for the rest of the world to deal with. There is undoubtably some of that, but it’s not the whole picture.

There is a body of research trying to look at schizophrenic prodrome in hopes of catching and treating before the first psychotic episode in hopes of preventing entirely and keeping people predisposed to schizophrenia from tipping into the disorder. I don’t know if there is any evidence that this works or if it’s just a theory at this point, I do recall there do seem to be some prodrome symptoms if they look back historically at patients, but usually more significant than was noted at the time (ie they were unrecognized by family and care providers, but were some of the hallmarks of schizophrenia that were not recognized as such. IIRC they were usually the negative symptoms, and thus more easily confused with other disorders.

This isn’t unique to schizophrenia either. Mental illnesses change the structure of the brain (the downsides to neuroplasticity that aren’t as sexy and fun as self improvement topics). The more depressive episodes you have, the more likely you are to have them in the future; ie if you have one depressive episode, you are no more likely to have another than someone that has never had one (genetics and environment playing a role) but once you have a couple, they’re more likely to reoccur and a lower bar for them to reoccur, and thus the reason intervention is important; be it medication, exercise, or therapy. The same goes for manic episodes in bipolar disorder (as well as depressive episodes).

Clearly some examples point to this not necessarily being the case, Nash being a good example. However, older age does seem to be a factor in lowering the severity of symptoms for most mental illnesses. And that easily could be the tipping point between able to manage with and without medications.

One last point here, the first person profiled talked about being on stimulants and antipsychotic medications at the same time and dear lord, why was this glossed over and not seen as part of the problem? A medication that increases dopamine in someone with a disorder of excess dopamine on a medication or three to lower dopamine? I think it’s fair to evaluate the patient experience with antipsychotics and with looking for more humane ways of treating people with severe psychiatric illnesses but not talking about the 800 lb gorilla in the room in their primary example; of course she’s going to be messed up on a medication combo that increases and another that decreases dopamine. Good grief. I mean I guess that can happen, people are prescribed all manner of opposing medications but also it should not be used as an example of why antipsychotics are bad. (And I’d absolutely love to know her prescribers reasoning for that combo.)
posted by [insert clever name here] at 8:27 AM on May 28, 2022 [5 favorites]

And I’d absolutely love to know her prescribers reasoning for that combo.

Don't underestimate the probability of her providers simply fucking up. I think any of us who have had to manage any chronic condition have noticed how poorly the U.S. (or Canadian) medical system handles coordination of care between multiple providers, or even the same provider over time. (There's a mini-documentary out there about two senior doctors rounding in a high-dependency cardiac unit in an NYC hospital; one of them says that he makes his living from taking people off medication.) And of course once you are treated as no longer reliable in self-report, good luck getting that addressed.
posted by praemunire at 8:47 AM on May 28, 2022 [13 favorites]

I knew a young (college student) woman who heard voices and was involuntarily hospitalized a lot. The side effects were awful - she was constantly drooling, for instance - but when I asked her if she'd talked to her doctors about that, she said in a very incredulous way, "You think I'd tell THEM?" For her, the doctors were the enemy. She always stopped all medications as soon as she was out of the hospital.

I had lunch with her in a restaurant once, and she started very loudly talking about whether people were virgins (a topic she was obsessed with), and she ended up talking a lot to a young man at the next table. When she went to the restroom, he asked me if she was "always like this." The smile on his face made me glad I was with her. I couldn't help thinking of how sexually vulnerable she was.

I lost track of her, and her name was common enough that I can't find her online. This was years ago, but I still think about her and hope she's all right. I really sympathize with not wanting to live with those horrible side effects, but seeing her off her meds, I wasn't sure how she was going to manage. Another young woman I knew at the same time (I knew both through my own mental health struggles) stayed on her meds, and the tardive dyskinesia was very obvious in conversations last time I saw her, but she was able to successfully hold down a job, get married, and have children.

I never heard voices - my issue was severe depression - but I was able to eventually get off of all meds through somatic experiencing. I still see a therapist though. I have no love for the focus on medication in psychiatry, but in some cases (not all by any means), it can make things better for people.
posted by FencingGal at 9:32 AM on May 28, 2022 [5 favorites]

I think a big way threads like this can go bad is too many people coming in with second hand, "I knew a person who went off their meds and this bad thing happened," which implicitly suggests that people choosing to manage and navigate their interior landscape without meds are making a potentially-deadly mistake.

Yeah it's messy right. I am someone who lives with anxiety, different sort of issue, and my anxiety actively tries to keep me from managing my anxiety (making calls to doctors/therapists, taking meds &c.) and so it can be tempting to generalize about other types of neurodivergence. And there's also the lived experience of people living with people with mental health issues. My partner's son is schizophrenic. He's had times when he's been doing better and times when he was doing worse, times when the healthcare system was helpful and times where it was not. I have a cousin with schizophrenia who was going to be the subject of a Ron Howard movie (someone who was living with serious mental illness but also accomplishing great things) until things went kind of wrong and then we got A Beautiful Mind instead, a story with a happier ending. I have a friend who is schizophrenic who was someone who heard voices, could fold them into his life effectively, and that process worked well for him. Without better, more attentive care, it's very difficult to figure out which approaches--the Hearing Voice Movement among them--are going to result in the best quality of life for people, and if applicable, their caregivers and/or loved ones.

Gerald Bostock, I too was wondering why there was no contextualization of this movement in terms of others. There are so many lessons (positive and negative) to be learned from other similar movements and it seemed a missed opportunity to not have outlined some of them.
posted by jessamyn at 9:46 AM on May 28, 2022 [10 favorites]

> I too was wondering why there was no contextualization of this movement in terms of others

The author of the NY Times piece is Daniel Bergner. He has a book out called, The Mind and the Moon: My Brother's Story, the Science of Our Brains, and the Search for Our Psyche. The article is adapted from the book. Perhaps Bergner addresses the issue in his book. It's on my reading list.
posted by akk2014 at 10:23 AM on May 28, 2022 [5 favorites]

I know it’s coming from a place of concern but “stay on meds so you won’t discuss virgins in public where men might rape you” strikes me as a further example of how hard it is to discuss this within an ableist society.
posted by warriorqueen at 11:16 AM on May 28, 2022 [18 favorites]

It's a real mystery why someone who's perceived as sexually vulnerable might hate the psychiatric inpatient unit, a place notorious for staff on patient and patient on patient sexual violence.
posted by threementholsandafuneral at 11:21 AM on May 28, 2022 [15 favorites]

I know it’s coming from a place of concern but “stay on meds so you won’t discuss virgins in public where men might rape you” strikes me as a further example of how hard it is to discuss this within an ableist society.

Wow. That wasn't my point at all. I was very sympathetic to her not wanting to be on her meds - and I was very sad that she wasn't able to talk to her docs about it. I was really trying to make a point about sexual vulnerability as a problem for people who deal with mental illness. I certainly deal with ableism myself and have been a psychiatric inpatient six times. I'm sorry you felt a need to choose the unkindest possible reading of my post.

Time for me to nope out of this thread.
posted by FencingGal at 11:34 AM on May 28, 2022 [20 favorites]

As I said, I’m sure it was a genuine place of concern but your comment contrasted the vulnerable, virgin-talk non-medicated “bad patient” with the med-taking, productive, married mother of children. Those are the details that you chose to share in this discussion. That’s kind of hard to ignore.
posted by warriorqueen at 11:42 AM on May 28, 2022 [8 favorites]

MetaFilter really doesn't do these discussions well — not that anything outside of carefully cultivated spaces do — and I'm not sure that this conversation won't do more harm than good.

If it can be be productive and not hurtful, I think at the very least the conversation should be limited mostly to those with these specific lived experiences. And the rest of us — including those of us who deal with other difficult experiences, similar or otherwise — keep our (minimal) contributions as non-judgmental and considerate of other perspectives as possible.
posted by Ivan Fyodorovich at 11:53 AM on May 28, 2022 [4 favorites]

I am on multiple meds, including anti-psychotics. I have nothing but good things to say. Until I went on them my life was a mess and I went through daily suicidal ideation. Now I am functioning and do not want to kill myself all the time. I have been stable like this for years. And the anti-psychotics were really what made the difference, traditional anti-depressants petered out or even made things worse. Are there side effects? Yes, but overall they're minimal (higher cholesterol). Part of it is that I was started on third-generation and now am on fourth-generation anti-psychotics. Earlier generations of anti-psychotics, which are the ones most commonly known to GPs, are TERRIBLE with the side effects.

Also medication is about more than just dopamine levels. Just because one theoretically raises the levels and another lowers them does not mean they're having opposite effects because there's a lot more going on there. Reading a bunch of articles is not a substitute for genuine training in psychiatry.

I just wanted to give a perspective from a mentally ill/neurodivergent person that medication can work great. I think meds are at their worst when they are being prescribed by uninformed or uninvested providers whose primary exposure to psychiatric treatment is through medication advertisements and whatever course they took years ago in med school--or if they do have psychiatric training they have given up on keeping up with research and just return to the same things over and over again. In the USA there is a dearth of psychiatrists and an even greater dearth of psychiatrists that take insurance and an even GREATER dearth of psychiatrists who take Medicaid. There's a lot of "taking what you can get" and it leads to bad medication experiences. I'm not saying that people can't have wonderful psychiatrists and the meds are still shit, but I think bad providers can drive situations where someone swears meds off entirely because they've been given the wrong meds or a bad combination. So I am entirely sympathetic to people who want to go off them altogether.

That all said--as mentioned above, I think there is a lot to be investigated regarding the cultural aspects of psychosis, how it manifests differently in other cultures compared to one like in the USA that is steeped in violence, conspiracy theories, and a general distrust of other people. And clearly from the accounts above it is possible to live a good life with psychosis, and I would be really interested to find out if there are therapeutic treatments out there that could make it possible for people who experience it in a harmful way to change it into an experience that still exists, but isn't harmful (i.e. friendly rather than aggressive voices). Mental illness is way more complex than other illnesses and a lot less understood. They're physical, behavioral, cultural, all of it, and it's no help that modern psychology got its start in quacks like Freud. It's digging itself out but what a hole to start in!
posted by a_masterpiece_of_cold_cuts at 1:09 PM on May 28, 2022 [25 favorites]

FWIW, I am fine with people commenting in the thread without lived experience. If I thought the thread was harmful for me, I'd've skipped it, and I support people being able to comment about it, even people I don't agree with (although I can't say there's a lot I disagree with wholesale.)

However, I think in a thread where there are people with lived experience speaking with people who are expressing kind of outside/arm's length concerns, it does also need to be okay to ask those people to consider whether expressing their fears in particular is serving an outdated or controlling or ableist narrative.

It is because I have listened to my voices -- more accurately, that T. listened to me -- that I have a decent, ordinary life, and been able to enjoy not just one but several career paths, and have experienced the joy of a garden and martial arts and travel and all kinds of good things. I can only say that for myself, but I do know that other people have been sure that if I (well, really, T.) let that happen I would end up institutionalized and...nope.

Saying that, however, puts me so far outside the dominant narrative -- that being that hearing voices is inherently incredibly risky for self and people around one's self -- enough that people will insist I have made it up (for all the shits and giggles it gets me I guess?) rather than just believe me. Because it's not reconcilable in our society that you can hear voices, and have a pretty ordinary good life, and not descend into I guess mad psychosis.

In this case the article went into the way that risk management and the need for control has outweighed just - listening to people and I see that replicated in the thread here. That's okay for some value of okay; we are all people in the world we're in, which is an ableist and prescriptive one, and which does have some people in it who need medication in order to be okay - both can be true.
posted by warriorqueen at 2:28 PM on May 28, 2022 [14 favorites]

Is Metafilter really doing this badly, though? I have heard a number of viewpoints, understand that the issue is complicated, and if, say, one of my students told me she heard voices, would respond in a fundamentally different way than I would have done before this conversation. I am incredibly grateful for everyone who have spoken up.
posted by acrasis at 4:11 PM on May 28, 2022 [27 favorites]

warriorqueen: Because it's not reconcilable in our society that you can hear voices, and have a pretty ordinary good life, and not descend into I guess mad psychosis.

The story that stood out for me from Muses, Madmen, and Prophets was about the author's father and grandfather, who both heard voices. The grandfather said his voices gave good business advice, but at the racetrack they'd argue with each other and he'd end up betting on the wrong horse. And that was it; they were just a normal part of his life.

His father, on the other hand, knew a lot more about mental illness. As a result, he was afraid and ashamed of his voices. His fear that they would destroy his life if anybody knew about them eventually led to a nervous breakdown, a psychiatric stay, a diagnosis of psychosis, and the loss of his law firm job for "mental unfitness".
posted by clawsoon at 4:12 PM on May 28, 2022 [11 favorites]

How much does the fundamentalist/charismatic Christian paranoia that voices are "demons" affect the experience and outcomes of people who hear voices? Is that paranoia related at all to how the institutional scientific responses developed over the 20th century?
posted by clawsoon at 4:16 PM on May 28, 2022 [7 favorites]

>I think meds are at their worst when they are being prescribed by uninformed or uninvested providers whose primary exposure to psychiatric treatment is through medication advertisements and whatever course they took years ago in med school--or if they do have psychiatric training they have given up on keeping up with research and just return to the same things over and over again.

I think one of the problems is that this is most of them. Really, all of the ones I’ve personally heard about in my orbit (or seen myself, for anxiety).
posted by cotton dress sock at 8:09 PM on May 28, 2022 [6 favorites]

Most of the providers who've prescribed things for me that turned out to be either ineffective or actively harmful were pretty honest about, "I have no idea if this will help you or not, but you've already tried A, B, and C, so let's run D up the flagpole and see if anyone salutes."
posted by The Underpants Monster at 9:30 PM on May 28, 2022 [4 favorites]

Oh, and there’s always the classic “The samples of X were promising, but your insurance doesn’t cover it and even with the manufacturer’s patient discount program it’s more per month than you could ever be able to pay.”
posted by The Underpants Monster at 9:59 PM on May 28, 2022 [2 favorites]

Without better, more attentive care, it's very difficult to figure out which approaches--the Hearing Voice Movement among them--are going to result in the best quality of life for people

This is one of the fundamental problems; without more care, better care, and a broader range of care, it's hard to even figure out how to evaluate who might benefit from simply coming to terms with hearing voices and who without medication will decompensate and end up on the street. Surely there are people all along this spectrum, and "give people drugs with serious side effects that somewhat work and SSDI, if they're lucky" is a blunderbuss approach. So I do think the work of groups like the HVN is valuable even if we can't just dispense with medication in all cases.
posted by praemunire at 11:44 PM on May 28, 2022 [6 favorites]

How much does the fundamentalist/charismatic Christian paranoia that voices are "demons" affect the experience and outcomes of people who hear voices? Is that paranoia related at all to how the institutional scientific responses developed over the 20th century?

That's a very interesting question, clawsoon.

I’ve been interested in the phenomenon of illnesses that seem to exert a ‘protective' effect against other illnesses for a long time, and a recent Askme seemed to suggest the possibility that rheumatoid arthritis could protect against schizophrenia. I found instead that schizophrenia is well known to 'protect' against rheumatoid arthritis:
Numerous studies have reported a reduced risk of rheumatoid arthritis (RA) in schizophrenia. The mechanisms are unknown, but recent genome-wide association studies of schizophrenia have shown strong associations with markers spanning the major histocompatibility complex region, indicating a possible role for adaptive immunity also in schizophrenia.
Which made me wonder whether schizophrenia and RA could have symptoms in common, such as hearing voices.

I found a number of anecdotes to that effect in places that probably shouldn’t have surprised me as much as they did, such as this archetypal account of a nun who was cured of her RA when she heard the voice of God and went on to establish a healing ministry. Which casts an interesting light on all the stories of tent revivals where people are called down to the altar, accept Jesus, and throw away their crutches.
posted by jamjam at 4:44 PM on May 29, 2022 [5 favorites]

My wife is on an antipsychotic for her bipolar disorder (abilify, and also on ecitalopram, which I don’t know the nature of). Both sides of it are problematic. On her meds she’s emotionally flat snd her libido is as well; off them, she barely sleeps and her hypochondria goes to an incredible level. But on them she can function well enough to keep a job and not have me need to take care of her while I’m working. (One of the medications, in fact, sends her into a full DID setup, where there’s at least three other alters, and dealing with two of them is extremely difficult for me, so I’m grateful.

She’s also, when not medicated, heard voices, and has had them tell her to kill herself, which is another issue I’ve had to deal with.

It talked about how the "fight or flight" response actually has a third option: freeze.

There’s actually four: fight, flight, freeze, and fawn.

My wife, in one of those incidents, has hit me. I went into flight, then to fawn, and that almost killed our marriage.
posted by mephron at 7:30 PM on May 29, 2022 [3 favorites]

Is Metafilter really doing this badly, though?

There are people in this thread and at least one other saying that it is. If we won’t listen to them, can we at least not deny that they’re saying anything?
posted by Etrigan at 5:57 AM on May 30, 2022 [8 favorites]

There are people in this thread and at least one other saying that it is. If we won’t listen to them, can we at least not deny that they’re saying anything?
The problem is that people do a drive-by to claim that without explanation, so there's no way anyone can respond, adjust behavior, or learn anything. I've been here for many years and compared to the rest of the internet, Metafilter feels like a progressive/lefty/social justice-aware outpost that if anything is a bit of an echo chamber on that side (hey, for me that's good). You might as well just type "sigh ... typical Metafilter!" in every thread.
posted by freecellwizard at 6:54 AM on May 30, 2022 [6 favorites]

I put a MetaTalk in the queue just now so we might be able to wait for that (if it's approved.)
posted by warriorqueen at 6:59 AM on May 30, 2022 [3 favorites]

Thank you very much to the OP for this fascinating article, and to others for participating in the discussion. You have all definitely expanded my perspective on this issue and I will be approaching it differently from now on.
posted by rpfields at 8:45 AM on May 30, 2022 [1 favorite]

I'm the OP. I have extensive experience with the mental-health industry, both personally and through two people who are very close to me. For whatever it's worth, I thought that the discussion went very well in this thread. I'm seeing lots of intelligent, respectful comments. I'm grateful to everyone who participated (even those whose opinions may differ from my own).
posted by akk2014 at 11:12 AM on May 30, 2022 [11 favorites]

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