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November 2, 2023 10:13 AM   Subscribe

"Perhaps the inner life of these patients tells us something more universal about the search for meaning: For most of us, self-worth depends on being useful to others. And we, like Harry, are always struggling to find human connection—but he and others with psychosis might get that need met more easily by communicating telepathically with fictional strangers than in person with family or friends. As Isham said, “This is a very misunderstood group of people.”"
posted by Tehhund (22 comments total) 9 users marked this as a favorite
 
We previously discussed this here. Fascinating stuff!
posted by tiny frying pan at 10:35 AM on November 2, 2023 [2 favorites]


field known as phenomenological psychopathology, which puts the doctor’s sense of reality on an equal footing with the patient’s.

man, does that sound slippery
posted by Dr. Twist at 10:41 AM on November 2, 2023 [2 favorites]


I went into this article concerned that I was going to read another celebration of mental illness--you know the kind I mean, where it's not a disability, it's a superpower or whatever. I was pleased (while feeling an extraordinary tension) to see that this is actually walking a very thin and careful line between the two outlooks of either medicating the hell out of something, or treating it like it is not a disabling condition. I still worry. Harry--the self-reported happiest man in the world--has had "heartbreaking losses" that are curiously elided over. He appears to have been deeply at risk even if, as we later learn, "there were no immediate concerns about harm coming to him or others." Is that enough? What should we wish for him? That he could compartmentalize the delusions and live a normal life, or for him to be happily delusional, and leave the world behind?
posted by mittens at 11:00 AM on November 2, 2023 [5 favorites]


I think we all want the latter sometimes...

Also...what is a normal life? Seriously not being cheeky on that one
posted by tiny frying pan at 11:09 AM on November 2, 2023


Delusions - whether optical, auditory, etc - that do no harm - sure, I can understand clinicians approaching these people with non-standard approaches, and hooray if it helps make the patients happy.

But defining "harm" - to oneself or to others, and in what capacity (physical? emotional? legal?) - is where this obviously becomes challenging.

No simple answers or one-size-fits-all - but glad that it is being considered and implemented to some degree.
posted by davidmsc at 11:36 AM on November 2, 2023 [1 favorite]


Harry--the self-reported happiest man in the world--has had "heartbreaking losses" that are curiously elided over. He appears to have been deeply at risk even if, as we later learn, "there were no immediate concerns about harm coming to him or others." Is that enough?

Harry seems to be unable to work and to have little or no connection with his kids (and how traumatic did they find either his odd behavior or having to be separated from him?). Is his "happiness" worth that? More to the point, I suppose, if he were lucid and able to choose, which would he choose? Because he has anosognosia, aren't his doctors effectively choosing for him, either way?

I worry that we have very limited ability to predict which people suffering from psychosis will hurt themselves or others, and, even if we did, the infrastructure to keep them supported with effective care and good therapeutic relationships when they're only tenuously connected to reality isn't there. Elyn Saks became a successful law professor (and wrote a fascinating memoir) despite developing psychosis mid-law school. A man hearing voices in Maine just killed 18 people and himself despite many people being afraid he was going to hurt someone and reporting it to authorities. It would be very difficult to know where to draw the line even if the ideal supports for either approach were available, which they very much are not.
posted by praemunire at 11:41 AM on November 2, 2023 [7 favorites]


has had "heartbreaking losses" that are curiously elided over.

He lost access to his kids (at least temporarily), was unable to work, and had bad relations with his family.
Due to Harry’s odd behavior, and concerns that his children might be at risk, he was barred from seeing them for a period. Even when he was able to see his children more regularly, Harry often spent his days glued to YouTube, addicted to videos about the flat Earth and other conspiracies, making it impossible for him to work and damaging his family life.
He might enjoy living like that, but only as long as people are taking care of him while he sits and stares at YouTube and imagines himself the center of a weird world?
posted by pracowity at 11:44 AM on November 2, 2023 [6 favorites]


I worry that we have very limited ability to predict which people suffering from psychosis will hurt themselves or others, and, even if we did, the infrastructure to keep them supported with effective care and good therapeutic relationships when they're only tenuously connected to reality isn't there.

A fair point, but I did like how the therapist in the article said they would lose their connection to the patient if they insisted their delusions aren't real.

Mazel-Carlton believes that the last thing you should do is to tell someone that their voices and visions aren’t real. “If I were to do that, I’d sever my connection with them,” she said. “If I don’t validate their own fears and concerns, why would they turn to me as a source of support?” And so, like an improv actor, she jumps into their stories with them. This allows her to help the patient change a potentially dangerous narrative to one that’s benign.
posted by tiny frying pan at 11:50 AM on November 2, 2023 [1 favorite]


I did like how the therapist in the article said they would lose their connection to the patient if they insisted their delusions aren't real.

This is the recommended approach for dementia patients, and, right, one wants to imagine that there's a skilled therapist with a manageable workload talking to such people weekly with a service to handle random calls/emails from them 24/7 without anything falling through the cracks, constantly reevaluating what care they need based on a good therapeutic relationship, able to get them into more intensive treatment immediately if necessary...but does that arrangement exist anywhere in the world?
posted by praemunire at 11:55 AM on November 2, 2023 [5 favorites]


It does in this article? Hopefully? This seems a good guide for doctors with patients currently under their care.

The alternative is...to tell them their delusions aren't real and possibly sever the trust. So why not try this? Seems worth it to me.
posted by tiny frying pan at 12:21 PM on November 2, 2023


I think one question might be, is there an effective difference between validating the fact of one's fears and concerns (to use Mazel-Carlton's words) and validating the substance of those same fears?

Your delusion, say, is that your food is being poisoned. A very distressing situation. Is it more effective to say to you, "I believe you that this is extremely distressing," or is it better to say, "Yes, I believe you that your food is poisoned, and that is extremely distressing"?

Of course it's individual--which is why praemunire is right to point out the scaling issues--but that latter option just seems so dangerous.
posted by mittens at 12:31 PM on November 2, 2023


I guess I keep thinking about this...sure it's sad his relationships have suffered, and he is not able to work. But usually, these things cause distress...in his instance, they don't. So it's probably pretty tricky for a doctor to try to force distress on someone who isn't experiencing it.

Not trying to dominate this convo, bowing out now
posted by tiny frying pan at 12:35 PM on November 2, 2023 [1 favorite]


But usually, these things cause distress...in his instance, they don't.

Who takes care of Harry?
posted by pracowity at 1:24 PM on November 2, 2023 [2 favorites]


It does in this article? Hopefully? This seems a good guide for doctors with patients currently under their care.

There's a huge gap between "here's an approach we can take in talk therapy, when the patient is present and willing to engage" and the actual logistics of ensuring that psychotic patients get care all the time when needed.

Harry doesn't work. Harry has a minimal relationship with his family. Where does Harry live? Who pays Harry's bills? Who is Harry's caregiver? This is in the UK, so he's probably getting some benefits and has a bit of an easier time securing housing that's not actually dangerous to him; okay. Who will make Harry go to see the doctor if he decides he doesn't want to go? Who will be able to catch it if Harry deteriorates quickly? I've seen documentary footage of follow-up care workers trying to visit mental-health patients at their homes; they get turned away plenty. And that's in the UK, where they at least sometimes have such a thing as home visits by carers.

You might be thinking, "oh, there must be such a thing, it's so obviously needed," but while it's an understandable belief, it's just not the case.
posted by praemunire at 2:14 PM on November 2, 2023 [2 favorites]


I don't think anything except I don't quite get the sharpness against a mild article about one person who seems pretty happy with his life, and who isn't a threat to anyone at the moment.

I hope his doctor will be able to help him. Not having that doctor, would indeed be tough if he deteriorates, indeed. I see a caring doctor who seems to want the best for their patient. That's all I see. Your mileage can vary, and that's fine.
posted by tiny frying pan at 2:37 PM on November 2, 2023 [1 favorite]


I worry that we have very limited ability to predict which people suffering from psychosis will hurt themselves or others,

According to my psychology department colleagues, when this was unfortunately a relevant issue for an individual on campus, there are a well-defined set of six warning signs that are almost always present before violence towards others (though do not necessarily guarantee such violence). The harder issue is that people often mask symptoms of distress, and understanding of mental health is not widespread, so if someone doesn’t already have a good (and sufficiently frequent) therapeutic relationship with a relevant mental health professional those symptoms or warning signs may be missed or minimized by others.

and, even if we did, the infrastructure to keep them supported with effective care and good therapeutic relationships when they're only tenuously connected to reality isn't there.

That’s more the crux of the matter. Resources for mental health care are abysmally lacking, in general.

On the general topic of psychosis, the mental health first aid course I took was very clear that one should not directly contradict someone’s psychosis, though neither is validating the inaccurate belief helpful in most cases. The way the interaction between someone’s psychosis and the real world impacts them emotionally is very real and should be validated, however.

I remember reading something (maybe even here on Metafilter?) a few years ago about cultural and historical differences in people’s experiences of hearing voices that claimed that while this was commonly quite distressing for people in modern Western societies, there were some other more traditional societies where people’s experience was that their voices were friendlier or more helpful. Part of this was attributed to cultural attitudes toward mental health and interpretations of hallucinations, where cultures that viewed them as someone being in touch with something divine enabled more positive experiences and less disruptive outcomes for individuals with hallucinations, while in modern Western countries it was almost always a source of significant distress and people’s voices were more often advocating harm (mostly self-harm) and causing significant disruption to their lives and other relationships. The nature of individuals’ delusions seems to be strongly affected by whatever conspiracy stories are in the current cultural milieu, as well, with reported delusions going through fads of aliens in UFOs, government agents spying on them, etc.

We know that, for example, trans youth are at high risk for depression, suicide, and other negative mental health impacts not because being trans causes those outcomes, but because societal prejudice against trans youth causes those outcomes. I can definitely see someone looking at those cultural differences in both the content of people’s delusions and in the qualitative experience of them by the person with psychosis and wondering/worrying to what extent the harms experienced by people with psychosis are caused by our societal prejudices around mental health and our approaches to treatment, versus caused more inherently by the psychosis itself. I imagine it varies by individual even in cultural contexts that tend to have more positive or less harmful outcomes and experiences.
posted by eviemath at 2:50 PM on November 2, 2023 [4 favorites]


I don't think anything except I don't quite get the sharpness against a mild article about one person who seems pretty happy with his life

Again, a psychotic person killed 18 people and injured 13 more (and killed himself--which is a loss, too. He was just a regular person until he fell ill) and kept a state on lockdown barely a week ago, and this was after he had inpatient treatment and was flagged repeatedly as dangerous. When you talk about treatment, you have to situate it in the context of the support actually available--the inadequacy of which often shocks the conscience. Most of the support that must be going on here is invisible in the article and so we don't think about the costs (again, Harry appears to have more or less lost his family!).

I agree with eviemath that stigma, the side effects of medication treatment, and the general Western cultural framing of "hearing voices" can aggravate the difficulty of living with psychosis. I don't see any reason that some people can't live with voices and maybe with peer support, without challenging all of their delusions. But the questions of autonomy and danger in distinguishing who can and can't are vexing. Put aside threat to others for the moment--because our social safety net is even worse, the equivalent of Harry in the U.S. is probably homeless, living in unhygienic conditions and without any but the most basic medical care, and a target for both street crime and state harassment. I see these poor souls on the street and in public transit on a regular basis. If he's "happy," do we leave him there?
posted by praemunire at 3:30 PM on November 2, 2023 [4 favorites]


I was closely following the situation in Maine, and have a once-removed connection to one of the victims. It is very much not clear yet (or possibly ever) how much mental illness played a role in the recent mass murder in Maine, versus the guy being a right wing gun nut from a family of right wing gun nuts who snapped after experiencing some of the same sort of personal difficulties that set off many people who cause murders (especially mass murders, which are most often domestic violence related). According to some neighbors who were interviewed, he was not “just a regular person until he fell ill”, except inasmuch as toxic worship of guns and violence has become normalized in the US.

I looked back through my documents, and what my psychology colleagues wrote when we had an issue on campus was that there were five (not six as I stated earlier) themes or commonalities in instances of mass violence:
  1. The individual tends to be socially isolated or marginalized, and especially there being a recent negative life event.
  2. Personality or behavioural changes and/or a pre-existing condition.
  3. Presence of a cultural script: an idea that wrongs have been committed, and that violence may be a way of avenging the wrongs or bringing attention to an issue.
  4. Ready access to weapons.
  5. Failure of the surveillance system: people ignoring what in hindsight were clear warning signs of potential danger, such as talking about wanting to engage in violence and having targets picked out or other aspects of a detailed plan.
All of these applied to Card, the shooter in Lewiston, Maine. The goal of compassionate mental health treatment such as described in the article is to provide positive, supportive social connections, as well as to redirect people experiencing psychosis away from potentially violent cultural scripts. Continued, regular, positive interaction with a trained mental health professional has the side benefit of significantly reducing chances for missed warning signs, and also helps someone who is in a position to do something about it monitor for access to weapons. As my mental health first aid course also stressed, the vast, vast majority of people who experience psychosis are at much greater risk of being the victims of violence than the perpetrators. The article briefly discusses connections between history of trauma and development of psychosis; it also notes that in most cases of delusions of grandeur, people believe that they are called to help or save others - that there is a pro-social, not anti-social, impulse in most cases. A compassionate, positive therapeutic relationship can help prevent abuse of people who are more vulnerable due to their mental health; as well as provide guidance as described in the article to help ensure that a person’s actions in the real world align in some mutually reasonable manner with their pro-social intentions.

Mental illness may have been one of the factors in the mass shooting in Maine, but it was certainly not the only factor, and bringing it up repeatedly in a discussion of a case study of a non-violent mentally ill person and a discussion of some of the issues in treating people experiencing psychosis that has helped improve quality of life for at least some people, even if it may not be a panacea/best option for everyone, is really pretty shitty.

And yes, if people are happier living in situations that you would find intolerable, we should leave them to it despite not wanting that for ourselves. Being homeless is exceedingly hard and quite likely Harry would not be happy with that, I imagine. Very few people are happy living on the street, especially those with difficult mental health situations, because of how much violence they are at risk of, as you note. It might be less intolerable than other available options for some, despite not being a positive experience. That is not for us to decide for people, with perhaps vanishingly few exceptions. What we can do is work to offer better alternatives that could be actually positive not just less intolerable; where more caring, affirming mental health treatment - that also has the potential to reduce societal stigma if it can become more accepted or acceptable - is a component that can help enable additional social supports by building a trusting relationship between the person experiencing psychosis and someone who is part of the overall social support system.
posted by eviemath at 5:48 PM on November 2, 2023 [14 favorites]


Please remember that there are people who are members of this community who hear voices, or have been diagnosed at one time or another (correctly or incorrectly) as psychotic or delusional. Some have bravely identified themselves in comments in other threads. Others have not, and may never. But trust that they are reading your comments.

Let us also understand that many people who hear voices and/or have delusions know very well that their perception of the world is not the consensus reality, and have chosen to mask their difference. Such folks know quite well what the world thinks of them, and may choose to never identify themselves as a matter of self protection, not just from possible forced institutionalization or other medicalization, but also simply because the moment they reveal themselves many of the people around them will stop seeing them as reliable narrators of anything at all.
posted by Vigilant at 8:25 PM on November 2, 2023 [17 favorites]


I watched a movie “They Might Be Giants” a year or so back. Deals with this area and really made an impression on me.
posted by creiszhanson at 9:40 AM on November 3, 2023


When it comes to working with those who have different experiences of reality there is a wonderful methodology developed by Xavier Amador referred to as L.E.A.P.

Listen
Empathize
Agree
Partner (towards healthier choices)

There's a great Ted Talk that walks the audience though the 'experience' that I found tremendous at granting insight and empathy.

Finding L.E.A.P. was foundational for me in navigating the experience of having a relative who went through what might be seen as a Psychotic Break (radical shift in behavior - that led to involuntary hospitalization - that led to threats of murder towards family members seen as responsible for the 'imprisonment').

I have interestingly found this protocol helpful in guiding me working with those who have different worldviews as well.
posted by CheapB at 4:41 PM on November 3, 2023 [2 favorites]


'imprisonment'

I'm definitely not saying that threatening people over such a thing is a good idea, but involuntary hospitalization *is* imprisonment, by any sensible definition of the word.

Sometimes such involuntary hospitalization is done for bullshit reasons and people get railroaded, though obviously sometimes it is a fair and warranted thing if they are making clear threats.

I notice you said the person had a "radical shift in behavior", but did not mention they were dangerous to themselves or others. Maybe they were, in which case involuntary hospitalization of course made sense.

Anyway yeah as someone involuntarily hospitalized more than once, I have a certain perspective on this. It was for bullshit reasons and I wasn't a threat to anyone at all. Officials will lie or just check a box on the paperwork without much thought.

Also mental hospitals/wards can be Hell. They can make you worse off. They can make you suicidal when you weren't before you went in.

At the last place I was, they put me in a unit with dangerous, scary, violent men. Yeah, did you know that? That the meek, quiet, frightened women like me who can't defend themselves are put in with the scary dudes, without any kind of protection? At least in jail they separate people like me from people like them.

One guy, when I was walking by said to someone "...yeah I raped and murdered someone once...". Another guy had a large, circular brand on his forehead and every time he was within earshot he was talking to someone about Satan. Satan this and Satan that, no matter what time of day or night, that's what he was on about.

You aren't allowed to lock your door in a mental ward, or the doors don't even lock period, and mostly they don't even let you close them. Bathrooms have curtains but no doors. Anyone walking by when you are taking a shower could waltz right in on you.

There were numerous violent incidents while I was there. At least 4-5 times they did a code of some kind over the PA system requesting all staff members respond to an outburst. I don't know if someone was hurt. I hid in my room. I was terrified.

I told a staff member that I was scared, and he "reassured" me by telling me I could violently defend myself and I would not get in trouble for it, so I shouldn't worry. That was all the "help" I got. Note: I do not know how to fight, I would just freeze if someone attacked me. I'm a meek little baby lamb of a person. I was defenseless.

If one of these violent men had decided to rape and/or strangle me, they easily could have. The first two nights I did not even have a roommate who could have called for help if something like that had happened. A magnified sense of danger helps no one in such a facility. I was too scared to even go to group sessions, because being in a small closed room with these dangerous men spiked my fear.

In the common room, they paced around constantly, so maintaining a somewhat-'safe' zone of distance from them was difficult and I was always on edge. One guy head-butted me in my back out of the blue. No consequences happened except he was told "hey, don't do that". This only heightened my anxiety, which was totally warranted being among such dangerous people.

But yeah, it's not all sunshine and roses at mental facilities. They often make people worse. And often the staff members there really suck at their jobs. There are good staff members though too, of course.

And as someone who hears voices, and who is totally benign, I appreciate your comment, Vigilant. I take my meds but it does not make the voices go away. I am lucky in that mine are not negative, but instead positive.
posted by cats are weird at 8:19 PM on November 3, 2023 [4 favorites]


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