Why what we think we know about schizophrenia is wrong
theguardian.com
theguardian.com
Genome-wide association studies have recently shown that schizophrenia was in fact several distinct diseases [0]. Their symptoms turn out to be mediated by the same drugs, to the extent that they makes the people who suffer from those ailments manageable.
If your house suddenly becomes cold in the winter, putting on a jacket will help you feel better. You wouldn't infer from that that your furnace is down because of a clothing imbalance.
[0] https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.2...
This is a crisis in "autism", where Asperger's and autism are different on such an extreme scale, yet the language, medical literature, and treatment plans and funding are muddling it up to the detriment of all involved, creating a culture war between people who say their mild Asperger's is a personality type not a disorder, and caregivers of people who cannot speak or provide basic self-care for themselves -- because DSM dumps them in the same diagnosis and society loses the language to disambiguate the scenarios.
Although he's "stable", thanks to an injection every 3 weeks, he's not going to ever get better. In fact he continues to retreat further and further away from the world and life. Why don't you go to the bowling group, movie night, job placement, etc, I used to ask him (events organized by a local psych facility for their patients, etc). Those people are crazy, he said.
It's a baffling disease. Besides his hallucinations and delusions, the defining feature seems to be that it resists treatment of any kind that would lead to what you and I would call a normal life.
It might be tempting to read something like this and think "of course the crazy person thinks normal people are crazy". But I'd argue that "sane" people's reactions to mentally ill people are frequently more irrational and scary than the symptoms of the illness itself.
That is not meant to belittle the point that delusional people will strongly deny their symptoms, of course. Being close to somebody like that gets tough, especially when the delusions have led to harm to self or others -- even after they get treatment and it works, it's easy to become paranoid of relapse and fear that every small act of legit defiance or assertion of self is a recurrence of symptoms.
This is something that has been recommended for many years. Rahter than day centres where mentally ill people can go, secluded away from the world, we should provide a wider range. Still have those day centres for the people who need it, but focus on helping people reintegrate with their local communities by using "mainstream" services.
Here's a pdf from 2006, but there are earlier examples. https://lx.iriss.org.uk/sites/default/files/resources/Redesi...
So it becomes this sort of jedi trick of encouraging those things without being pushy. I don't always know how to pull that off.
Bob doesn't want a work-like scheme for mentally ill people, he wants to keep his current job and wants advice about disclosing mental illness to his employer and asking for reasonable adjustments.
These are the things that me and my friends have been campaigning for for all these years- a socially inclusive recovery model.
The Camphill Movement offers an exemplary model of how people with learning difficulties can be integrated into a genuine community. What barriers are preventing us from offering similarly strong integration for people with severe and enduring mental illness? Why are so many people with moderately severe mental health problems being excluded from society for lack of relatively modest accommodations?
Schizophrenics are real people first of all.
Congrats to your brother. I have heard it's possible for psychotic episodes to be a one-time thing and not recur. I have also seen people not get better. The whole thing is tough. It can be legit to get off the medications, but some people will need it for life. So how do you tell which situation you or a loved one is in?
I was just trying to emphasize that the diagnosis is never final, even after doctors have concluded it to be. In our case we never gave up. I think that the antipsychotic drugs make recovery extremely difficult, which is where alot of patients get trapped. The withdrawl symptoms themselves cause psychosis.
It sounds harsh, but when he's in that illness 'phase', the person seems more like a demon-possessed creature and not even like much of a person. When you hear the things and intonations that the person will say in conversations to themselves in particular.. that's what sounds the least person-like.
It is human nature to want to associate with people who display attributes you wish to see in yourself, and to avoid the converse. The aphorism "you are the average of your 5 closest friends" is based on that idea.
If your brother is self-aware of his illness and doesn't like its effects on him then his response is perfectly understandable to me.
But his problem is that he refuses to take medication, so not sure where things will end up in the future with him. It's very up and down. One day like yesterday he's hearing voices and talking to himself, then the next day he's sort of normal.
Hearing that someone else also has a family member that is going through that is helpful.
Schizophrenia is characterized by hallucinations, delusions, thought disorder, catatonia, etc. You don't hear much about catatonia these days because it is cleared up by benzodiazepines reliably.
Schizoid people have reduced emotional reactions compared to other people but they are in touch with reality.
Schizoaffective disorder seems to pick a few symptoms from schizophrenia and bipolar but doesn't fit the criteria for either. You might think that sounds less severe but it can be devastating.
The romanticization of schizophrenia of r.d. Liang, "one flew over the cuckoo's nest", szasz and others strikes me as particularly cruel when I see how it keeps people who are suffering from getting help.
It pictures the time when mental illness diagnostic was an easy method to put away anyone annoying or inconvenient (the subject really having a mental illness or not made little difference). It talks about institutional cruelty like torture and lobotomy.
But then I didn't read the book, just watched the movie - perhaps the "romanticization of illness" angle is more pronounced in the book but I'm pretty sure it was not the main theme and the novel did more good than bad for those diagnosed with a mental disorder or developmental disability.
As someone with bipolar disorder (very stable since diagnosis and medication) I’m always a bit dismayed when people call for locking ill people up “for their own good.” (Not that you’re necessarily saying that - it’s just something I do see people advocating for sometimes).
I’m in SF and previously lived Tenderloin-adjacent so I’m quite familiar with the unfortunate cycle of mental illness and drug/alcohol abuse from self-medicating. It’s not a pretty sight and I do think we should do everything we can to help these most vulnerable people in society. I’m just not sure taking their liberty is necessarily the best course of action.
The problem that I see is: what options are available other than violating their freedom by forcing them to undergo treatment or locking them up? You can't, for example, fine someone who doesn't have anything. Besides, I think its unlikely that punishment would accomplish anything
So I guess I'm not sure I see a good solution to the problem.
Do you think weird people that do not endanger their own life or the life of others should be locked away?
Intent is one thing, effect is another. One Flew Over the Cuckoo's Nest, the book and movie, broke ground upon its release, but one of its secondary effects was to establish the mid-20th-century mental hospital as a gothic setting, akin to the ancient stone manors of old, full of terrible secrets -- not to mention bizarre characters -- that are ripe for literary exploration. Today it's been almost completely tropified, especially since in the current era Great Literature is by definition introspectively psychological. An easy way to establish that your play or movie is "arty" is to set it in such an institution. One of the weirdest instances of this was in The Great Gatsby (2013), which wholly took place in a mental hospital (the plot of the novel being Nick's recollections to his psychiatrist) and implied that Nick admired Gatsby almost to the point of a crush and was so devastated by his death as to need psychiatric attention.
I do recommend you read One Flew Over the Cuckoo's Nest, the novel. It is written from the perspective of Chief Bromden, and his mental illness helps intensify the themes of subtle control, exercised by tyrannical people and institutions, with specific delusions he has that make him sensitive to that control.
One of my friends was sent to Napa State Hospital by his step dad because he had epilepsy. When he was seven. It took six years for his dad to win custody, because his dad was a Mexican.
That was the world of One Flew Over the Cuckoo's Nest.
http://graceofgodmovie.com/superdanny.mp4
It's worth watching all the way through. The difference in his attitude when I stopped being afraid of him and started treating him like a human being instead of a threat is dramatic. I learned a lot about life that day.
But we need to be careful not to downplay the incredibly severe difficulties involved in helping, treating, and even simply co-existing across the months and years with those who have schizophrenia.
I had a good friend stay with me for 2 months who ended up having significant schizophrenia-like symptoms (never found out the actual diagnosis). I tried my best to treat him like a human and get him the help he needed, but I was unable to. I don't want to go into details, but a lot of stuff happened. It was a very difficult time.
Patients overwhelmingly prefer the term patient, and this holds true every time we ask them what they want to be called.
Service user is a term imposed upon them by well-intentioned mental health professionals and academics who don't recognise their own power dynamic and who do a poor job of coproduction.
> while the council of the Royal College of Psychiatrists recently recommitted to “patient”.
...after they asked people what their preferred term is.
Most real world solutions are shitty and incomplete.
This. The day that mental health professionals realize this is the day that we start improving outcomes.
> there is no uncontroversial language when talking about mental illness – and that includes the phrase “mental illness”
Glad the author brought up this important point. “Illness” is bogus because it implies disease/biomarkers for which there is no evidence as the article states.
A more useful term would be “mental injury” as it frames the symptoms as a result of trauma. But I think the best term is simply “trauma” or “developmental trauma” when it goes back to childhood.
I’ve spent a month of evenings at Langley-Porter and then again at Zuckerberg, and the staff there didn’t strike me psychzombies. The last thing they wanted to do was to commit to a diagnosis of schizophrenia for my relative. I sat for an hour with the Attending on his outtake and she did everything to assure us that in her expert opinion it wasn’t black and white - drugs were part of the toolset and not The One Answer.
What’s wrong isn’t that people are ignorant. They always have been and always will be. Until you’ve been there, you won’t get it.
What’s wrong is we have brilliant people who are hamstrung by process. At SFGH it’s “If you aren’t a threat, you’re out” 7 days after the 72 hour lockdown. It’s a factory, because that’s all the runway WE give them.
We’re lucky. We’re wealthy enough and there’s enough of us that we can probably make this work.
But the other 90% in those wards? They don’t have anybody. So unless WE want to fund that level of intervention/compassion, the factory and pharmacology is the solution.
Such a terrible disease.
Biological stress is related to things like being malnourished and/or having hormonal imbalances (thyroid, cortisol, progesterone, etc), not getting enough sunlight (no red light -> winter sickness / UV light-> Vitamin D), etc. Biological stress is worsened when a person is medicated with patent medicines that are approved for treating behavioral symptoms by implementing wrong-theory about the cause of the behavioral symptom (i.e., inadequate serotonin -> depression [0], excess dopamine -> psychosis, etc).
Some scientists rediscovered a few years ago that the behavioral symptom of "psychosis" is strongly associated with an inability to make adequate amounts of the stress hormone cortisol [1].
Emotional stress has to do with people feeling trapped. From the article: "Importantly, what we call psychosis can also be a response to extreme stress or trauma."
Emotional stress leads to the release of cortisol too. If a person's long-term emotional stress exceeds their ability to compensate, their "mental health" will suffer.
One part of this article is about forcibly medicating people whom the professionals think don't realize they need the pills they're prescribed. IMHO, it is an act of violence to force a person to take pills that make them suicidal [2]. The legal systems generally recognize that people have a choice in medical treatments, but struggles with patients who don't even realize they have a problem [3], and/or don't like the treatments the professionals think they need. In the US the courts have decided that people can't be "helped" against their will without a court order. This is why Jared Loughner, the man who shot up Congresswoman Gifford's event, couldn't be helped, even though the people around him noticed that his behavior had changed [4].
The professionals tried to label my girlfriend as "schizophrenic". Really she was just stressed ("lonely"), and was suffering from the adverse effects of various medical interventions. Methadone causes sugar cravings; she'd taken to treating this medication-induced metabolic problem with alcohol a few days before we'd met (alcohol has 7 calories/gram, while sugar only has 4 calories/gram).
In my initial assessment she also reported being injected with a prescription endocrine disruptor maybe 10 years before [5]. This prescription drug has warnings about endocrine disruption [6], but doctors don't appreciate their patients' iatrogenic deterioration when it's associated with this defective drug.
My girlfriend became psychotic when she ran out of alcohol , but rather than treating her for the cause [7] they treat her for the symptom with "anti-psychotics". I consider her involuntary treatment program to be "medical assault". I found a lawyer a while back who was familiar with how the state's involuntary treatment system works, but lawyers are expensive, so I tried to go at it myself. Maybe the legal guild didn't take kindly to a legal-nobody pointing out that their system is ugly.
I guess I'm going to hire the lawyer.
tl/dr: The conventional practices of the mental health industry are wrong. Institutional inertia prevents the profession from fixing itself. Little bits of progress have been made in recognizing the system's contribution to the patient's problems. As I said before, the system needs a re-write: https://news.ycombinator.com/item?id=19545964
[0] What has serotonin to do with depression? - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4471964/
[1] https://psychcentral.com/news/2016/06/04/low-morning-cortiso...
[2] https://en.wikipedia.org/wiki/Akathisia#Drug-induced
[3] Anosognosia - https://en.wikipedia.org/wiki/Anosognosia
[4] Jared Loughner - https://en.wikipedia.org/wiki/Jared_Lee_Loughner#Behavior_ch... "In the months leading up to the shooting, Loughner's parents became increasingly alarmed at their son's behavior, at one point resorting to disabling his car every night in order to keep him at home."
[5] https://en.wikipedia.org/wiki/Depo-Provera
[6] "Effects on the Hypothalmic-Pituitary-Adrenal Axis: Some patients receiving medroxyprogesterone acetate may exhibit suppressed adrenal function. Medroxyprogesterone acetate may have cortisol-like glucocorticoid activity and provide negative feedback to the hypothalamus or pituitary. This may result in decreased plasma cortisol levels, decreased cortisol secretion, and low plasma ACTH levels.The use of DEPO-PROVERA Sterile Aqueous Suspension may, due to its cortisol-like glucocorticoid activity, also produce Cushingoid symptoms such as weight gain, edema/fluid retention, and facial swelling." - https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/01...
[7] https://en.wikipedia.org/wiki/Substance-induced_psychosis#Su... - "Alcohol is a common cause of psychotic disorders or episodes, which may occur through acute intoxication, chronic alcoholism, withdrawal, exacerbation of existing disorders, or acute idiosyncratic reactions. Research has shown that alcohol abuse causes an 8-fold increased risk of psychotic disorders in men and a 3 fold increased risk of psychotic disorders in women. While the vast majority of cases are acute and resolve fairly quickly upon treatment and/or abstinence, they can occasionally become chronic and persistent. Alcoholic psychosis is sometimes misdiagnosed as another mental illness such as schizophrenia." (emphasis added)
(edit: added reference [7])
I'm a person who was medicated with the older & new generation of antipsychotics for two years of my early 20s because I was suffering religious conversion therapy "best I can describe it" from family and where I was in circumstances any other person would have great amounts of stress. The outcome of unfortunate events made me with a doctor who disliked me for desiring to be a woman (I was born a male) and attempted to convince me it's delusions & hallucinations; when I attempted to communicate I never suffered from either. The medication would result in me doubting myself but I eventually broke away from it all. It was impossible to find anyone to help sue for the tremendous pain (I still suffer to this day from it all) and it's been many years since it all happened.
Anyway I deeply believe there should be a special hell for people who go into this field but I doubt anyone had any will in the outcome for me being any different because I've read philosophy on determinism since then. I think the field has done more damage than good and is a net negative with getting away with it all because of government allowing it. People prefer to believe something is good and when it really isn't.
I believe you would like that book, her experiences are like yours.
[1] https://www.amazon.com/Road-Back-Schizophrenia-Memoir/dp/161...
By the way, did he disliked you because of your desire to be a woman, or for some other reason?
> I plan to act on suicide in the near future because of the torture.
It makes hard to me to speak with you. It feels like a minefield, one wrong step, one wrong word and I became a cause of someone's death.
I'll try to ignore that. Why are you suffering now? If I understood you right, torture ended at least a few years ago. Some kind of "flashbacks"?
"It's thought that..." when referring to how medications work.
Let's just agree that we all know nothing about mental health.
The problem with psychology is that it is a much more disjointed science than others (and has been for a long time). You have islands of logic and some overlapping theories but all of them do not follow a unified framework. It is similar to how modern physics is trying to connect quantum theory and gravity.
I'd argue that the scale of such disjointedness correlates with the power of predictability of phenomena in a certain field. It is therefore true that we know nothing and at the same time something about mental health.
Connecting and integrating psychology through evolutionary psych, behavioral theories, cognitive sciences and such is an ongoing area of research and an example of an effort which reduces disjointedness of a field which may result in more succesful predictions and deeper knowledge about mental health.
If there is a comprehensive theory it is that mental disorders and developmental disabilities come in layers.
You might have a genetic predisposition to certain problems, have that exacerbated by traumas, but learn how to compensate for them in some ways. You might do badly at certain things or certain situations but if you have support from other people, understand the difficulty, etc. you can do O.K.
The big trouble I think is that mental illness and developmental disabilities interact with the expectations that people have about others.
For instance much of the satisfaction parents get out of parenting is using their children as "self objects"; they want to dress them up, show them off, bask in their accomplishments, etc. An autistic child can't do that for them and they find that hard to accept.
The marketing of SSRI's is also distorted. They are prescribed a lot by primary care docs who need to be on top of a wide range of medical problems and can't be experts on mental health too. That is a good thing because they help people and it can be hard to get real help from a specialist.
Depression has many symptoms and for many people SSRIs help some symptoms but not others. For me, for instance, SSRIs help me control my emotions in situations where I might get overwhelmed and yell at people. I believe that they increase my self-control as opposed to suppress my emotions.
I have other symptoms that SSRIs don't help with, but I do feel like they've helped me a lot at being a parent.
Yet we know very little, like, we knew how to make fire before Lavoiser discovered the role of Oxygen in combustion.
The various paradigms we use are approximate, not unlike humor and miasma theories were of some help before we understood physiology and discovered the existence of germs.
The main theories of the 20th century (psychoanalysis and chemical imbalance) have been steadily eroded by research, but are still have far too much importance in clinic.
> You might have a genetic predisposition to certain problems, have that exacerbated by traumas.
Once we understand what genes and genes circuits are involved, and how trauma makes it worse, we'll be getting somewhere.
There is a lot of social complexity that means we may not take advantage of those facts. For instance we might get better drugs and other treatments but will that really help the people who are crapping on the street in San Francisco?
Autism in particular challenges the assumptions of society. The one thing aspies really can't do is "see the emperor's clothes". In asperger's day they did not get along well with National Socialism, today they have problems with neoliberalism.
You might fantasize that getting real help for aspies would increase their productivity a lot, mean they pay more taxes and make the help profitable for society, maybe even bend the curve of our civilization.
From another viewpoint there is more talent than there is opportunity. Maybe Aspies are 1% of the people in the top 2% of IQ, salvaging them means a small increase of the talent pool, and if you at the top of some insanely competitive pyramid (etc. academia, business) why spend money to make it more competitive for your kids...
Similarly, social structures tend to constrain the performance of science. We create the script that there is a "depression gene" and people build a career around that, maybe somebody wins a Nobel Prize, but really science is "what scientists do" and is about making stories that make sense to some people at a certain time and saying that some people are winners and others are losers. Go look at a Cochraine report on this or that and you'll see that 5000 studies got done, maybe 5 of those were done right, and there aren't enough samples to really be conclusive.
Astronomy is like this. We "know a lot" but every time somebody does a new study of Cepheid variables we find the cosmic distance scale isn't what we thought it was, the cosmological models are broken, etc.
That is, science manufactures a certainty that isn't there. "Reason" is often a label people use to attack other people. "Reason" magazine for instance has that name to say that socialists, labor unions, regulators, etc. are not "reasonable" and shouldn't be listened to.
Psychoanalysis is still very potent here though. The mothers of autistic and schizophrenic people were, for decades, vilified as responsible for the problems of their children.
A friend of mine who was anorexic for years had to endure cruel and demeaning treatments (based on Freudian BS). As she said: "As if it were funny to lose all those kilos :-/".
It's recently been found that, at least in some cases, anorexia is the result of auto-antibodies that stimulate the melanocortin receptor in the brain (the main satiety hormone). Those antibodies occur due to a cross-reaction with a protein secreted by E. Coli (CLPB). Bulimia and binge eating can have the same pathophysiology (where the antibodies block the receptor instead of activating it). Yet my friend was treated as if she was making it up, "to ultimately affirm herself".