Improving Outcomes for Psychosis: Psychiatric Survivor and Critical Psychiatry Perspectives

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Below are excerpts from a talk given by Dina Tyler — a psych survivor, family counselor, and cofounder of Bay Area Hearing Voices, among others — at UCSF Grand Rounds last month.

“I was and still would be non-compliant. I’ve spent my life creating compassionate alternatives to the traditional mental health system because my hospitalization was really bad. I would never ever want to seek help in a psychiatric hospital ever again. I’ve seen over and over that what happened to me happens again and again and is completely normal and common. Even today, right now, there are people being traumatized in psychiatric hospitals right here in the Bay Area. I know because I’ve talked with many patients, families, and advocates in the area for years. So this isn’t just a Dina Tyler story. This isn’t just a plea from my perspective. This is a story of many, many patients, and the perspective of an international movement of patients, families, clinicians, researchers, legal advocates, and disability rights activists. This is a story of normalized violence and human rights violations, and a plea for how we can all choose to no longer participate in it.

. . . If I had been surrounded by people who could help guide me through the withdrawal and teach me how to prioritize getting sleep, by people who were curious instead of afraid, I may have been able to get through this without the need for hospitalization. That maybe if I and the people around me could have been helped to see that there was some significance in what I was proclaiming, that I could actually do something meaningful in the world, something with impact, something with power to affect change — was that so crazy? Or did it come true?

I had what was labeled as a ‘manic episode’ — more evidence for my ‘illness.’ Yes, I had been up for five days without sleep; I guarantee you anyone in this room who stays up long enough will go psychotic and manic. It is not an illness; it is a stress response. Maybe they should have asked me why I couldn’t sleep; maybe they should have helped me understand withdrawal effects and learn how to take better care of my sleep.

So I had this vision; it would have been incredible if I had been supported, but instead it became the evidence that I was ‘ill’ and needed to be hospitalized. I wasn’t suicidal; I wasn’t starting fires; I wasn’t threatening to kill anyone; I wasn’t committing crimes; I got really excited about something I figured out. That was it.

. . . After experiencing such dehumanizing treatment there is no amount of convincing or coercion that could ever make me want to go back voluntarily to a psychiatric hospital. For years I felt the threat from family members and treatment providers that I would be rehospitalized if I came off my medications or for any other number of reasons. Since there are so many of us who would never want to be involuntarily hospitalized, I have spent my life trying to create alternatives to any forced treatment.

There is a problem with the design of what we call ‘care.’ We always need to look at the design when we’re not getting the outcomes we want and refrain from blaming it on the patient when they refuse our services. We must consider the possibility of iatrogenic harm: harm that is caused by the treatment. My refusal to seek ‘treatment’ was called a ‘lack of insight.’ This is an incredibly dangerous and offensive clinical trope that has been gaining traction over the last decade. There is even an unproven myth often presented as fact — similar to the rise and fall of the ‘chemical imbalance’ theory — called ‘anosognosia,’ something that is studied in brain injuries that is being falsely attributed to mental illness — that someone ‘lacks the insight’ into their condition, that they are so ‘ill’ that they do not know that they are ill, and that this is used as an explanation for why people refuse medications and conventional treatments. This idea of lack of insight is dangerous because it assumes that people do not know what is best for them and that they can be ignored, and another person gets to decide what is best for that person. ‘Anosognosia’ is a loophole, a trap door, an exception, that lets in one group of powerful people to step on a group of vulnerable people.

What is it truly? The idea that a person has a lack of insight arises between two people who are having a disagreement: two different perspectives, different ideas about what is and is not helpful. Humans have had disagreements over belief systems for a very long time. If we look at how opposing belief systems have contributed to the amount of violence and oppression — from arguments at a family dinner table to countless genocides and brutalities on this planet — we know that there is no easy solution to proving who holds the truth. ‘Psychosis’ is a disagreement over what is reality. Psychosis is often a disagreement over belief systems. If you tell the person that what they are experiencing is not real — like hearing voices is ‘just’ an auditory hallucination — it doesn’t make their experience go away. You just become a person they cannot talk to about what is really going on. It simply leaves them to be alone with their experience.

By a show of hands, has anyone here ever had a song stuck in your head? Well, that’s an auditory experience that no one else can hear. We all can experience some degree of auditory hallucination. The research by Romme and Escher that spawned the international Hearing Voices Movement showed that many people who hear voices are managing the voice-hearing experience without any need for psychiatric interventions, and that hearing voices is not a sign that there is something inherently wrong with you that needs to be eradicated. And actually across different cultures, voice hearing can be seen as a normal part of human experience. Here is a fantastic study of the Maori indigenous people of New Zealand and how what gets labeled as ‘psychosis’ by Western doctors is actually understood and held well within their spiritual beliefs. I also recommend the documentary Crazywise for anyone who hasn’t seen it.

. . . This is how we can hold crisis as a potentially transformative experience in the life of the person in front of us. There is always a possibility that it could provide some meaning and purpose to the person’s life, maybe even a spiritual awakening, or that there could be much-needed growth and learning that sparks a change in how they want to live their life. Growth is not usually a blissful experience. From the outside looking in, and even for the person going through it, it can look very painful. And of course, our first instinct is to try to stop the pain and discomfort at any cost; but this isn’t always the best response for the long-term outcome.

. . . If you really ask those of us who were struck with quote unquote ‘madness’ about the content of our messages, there is often a common theme of somehow wanting to save the world. That those who are ‘mad’ may represent transcendence: being outside the social order and able to see beyond it. And it is not uncommon that the savior is viewed first and foremost as a mad person or a fool.

. . . We need to ask people why they are non-compliant. We have to acknowledge the anger of those that feel harmed by this system. It is not a lack of insight, it is trauma. Trauma caused by the treatment. Force or coercion is not the answer. But the answer is understanding why people feel this way and designing a different kind of care.

. . . No one person holds the ultimate truth. There is always a bigger picture. There is a purpose to different perspectives. There is a purpose to those that we think of as ‘fools.’ It stretches us to grow to see beyond our own narrative, to learn from our own ‘foolishness.’ Those who actually lack insight are those who do not try to see from another’s perspective, do not try to understand the context or bigger picture of what is going on for a person in their life, those who simply reduce everything into ‘these symptoms mean this, thus the person must do this.’ ‘Psychosis means that a person must take medications.’ This is not truth.”

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9 COMMENTS

  1. “Madness” or odd behavior may simply be survival responses to adverse childhood experiences. My
    father was a victim of “The
    First American Amphetamine
    Epidemic 1929-1971. His doctor’s response was to Gaslight my mother’s complaints of his consequent
    abusive behavior (amphetamine psychosis) by
    addicting her to drugs beginning with Miltown, followed by Librium, ending
    with decades of Valium.
    That way they could keep
    my dad on amphetamines
    and steroids and drug companies could keep making
    money.

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  2. All this leaves me so sad that the community that is designed to help us hurts us and it takes something like this web site to help deal with it all. I had a similarly experience in the 1989s of coercion and threats to take meds and my husband and I both know they made my condition worse. It took a move to another city with a different psychiatrist and family counselor before my meds were changed and then I began the recovery process. Unfortunately my mother was heavily tranquilized which of course made her condition worse and so it went. All she needed was good counseling to help her with her grief and anger issues. Actually it’s beyond sad.

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  3. What about those others around you who must deal with the consequences of your being awake for “five days straight”? Hardly anyone lives in a vacuum in this day and age, and we, as a society, might seek a reasonable balance in our coexistence, which may involve a seemingly unwanted intrusion into our individual autonomies. Have compassion for each other!

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  4. The same people who are supposed to be there to help ones with mental health issues instead seem they are against us/ do not advocate for us. I imagine if the industry was more responsive and caring if I would have the RAP sheet I have now. I can’t even get a good job anymore and I know myself from my psychosis- two totally different personas… it’s so unfair institutions are not held to higher standards in America, but we as the patient carry the weight.

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  5. Tying humans to beds and electric shock” therapy”? Threatening injections projecting a diagnosis calling names of mentally ill I do believe
    It’s the other side who has the mental block
    Because believing in God as my own brother called me “delusional (which 1/3 of the population has)” it is atrocious and is narrow minded. Also certainly can be a response to trauma
    but the pockets run deep on the human condition and human trafficking. exploiting one another ” just what people tdo” yeah I guess. Like social workers and babies rehomed like dogs ;especially if they can fake or fear the alleged mental illness
    I am angry that I can’t loose my empathy and belief in the golden rule but what ever survival of the fit-est or survival of the one who can drive the other ” bat shit crazy”

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  6. I have had a lot of trauma from being forced into psychiatric hospitals and institutions. As a person with complex PTSD, it has furthered my trauma. Imagine having vivid flashbacks (reliving traumatic events in your mind) and then being forced into restraints (for your own good), where you lay on a hard backboard, strapped down, for three hours or more, begging to be free. Or being talked down to because you are classified as mentally ill. To have your thoughts, opinions, desires about your own well-being and recovery dismissed because ‘you don’t know what’s best for you’. To those who have not experienced such traumatic events, it is impossible to understand, what us “crazy” people have gone through. The institutions and the people that run them do far more damage than good. They cause further trauma, which makes an individual have to go back into the hospital over and over. It’s a vicious cycle that many people can’t get out of. The revolving door. The system needs reformed!

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  7. It sounds more like you’re talking about mania and mild psychosis, which even then can be incredibly harmful, dangerous, and painful. Full blown psychosis is more akin to torture. I agree that the current dopamine blocking antipsychotics are awful and should not be forced on people, but we need better, alternate medications that work without stripping life of positive emotion. CBD is an antipsychotic with virtually no side effects, and seems to be equally as effective as conventional antipsychotics. Of course, this use of CBD is suppressed by the pharmaceutical companies, that prefer people to think there are only two options: take drugs that ruin your life, or suffer in silence (and take an anti-medical stance). It should be possible to eliminate psychosis with minimal side effects. People should be allowed to choose whether they prefer to live with their symptoms or the side effects of medication. For some people with mild symptoms, even mild side effects may be unacceptable, or they may find that their experiences actually enrich their lives. But people with more severe or distressing symptoms should have the option to eliminate them from their lives without sacrificing their ability to feel pleasure and happiness. The option of treatments with minimal side effects will greatly reduce the amount of “medication non-compliance” as by far the main reason people avoid taking antipsychotics is due to side effects. While it is true that people in acute psychosis can lack insight into their condition, it is a myth that this lack of insight extends into recovery. Some people with chronic psychosis and/or delusions lack insight most or even all of the time, but this is not the norm for people with schizophrenia, and it is not responsible for the majority of medication refusal. The majority of medication refusal is rational.

    Some situations will still exist where someone gets stuck in psychosis (as opposed to just having symptoms of it). In these situations, the goal should be to minimise their suffering. This can be done by giving them a medication such as CBD, pimavanserin, diazepam etc. (not dopamine blockers). It may need to be given forcefully, but should not be forced if the act of giving it (and the side effects) produces more suffering than that avoided by reducing the psychosis. So in minor cases, where the person is not very distressed, forced administration should be avoided. And in more severe cases, if the attempt at forced administration severely exacerbates their distress, administration should be avoided, at least until it can be done in a more humane manner, or it becomes evident that the person is suffering more from being left in psychosis.

    You can’t really talk about how to deal with psychosis without specifying the severity, level of insight, and level of distress. Otherwise you end up taking a harmful approach for certain groups of people.

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