Thursday, May 13, 2021

Comments by kindredspirit

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  • Capitalism pits people against each other on an individual level as well as a systemic level with all the ways we are labeled and grouped and tallied and, ultimately, divided. But it’s often unfortunately individual level behavior that reinforces the systemic harm. The social contract and safety net have been obliterated. Competition and judgment rules because it’s every person for himself and we all sort of know that.

    And I’m only talking about westerners generally – the US and it’s big allies. So many more around the world are negatively impacted by US government policies, military actions, economic sanctions and trade pollution.

    My position is generally anarchasocialist or Left Libertarian.

  • DW, I find your willingness to challenge others willingness to challenge your beliefs quite remarkable. You seem to desire others to change their style by adopting their style while challenging their style. I can but sense some internal conflict. I will continue to welcome your contributions to the community.

  • “On the other hand, despite the many benefits that come with ‘talking,’ no amount of verbal disclosure of shame, guilt, or sadness can address the social drivers of suicide, including a stable income, a place to live, and meaningful work.”

    Overall, an excellent analysis. And this part sums it up nicely.

    I would only add that for most women, these exact same factors apply. Talk therapy does not fill hungry bellies, provide a roof over one’s head, meaningful contribution to the community in which one lives (whether employment or volunteer), or good medical care. Therapy can be helpful for processing trauma, working through difficult family dynamics, growing beyond emotional survival, etc. But it should not be seen as a panacea for fixing the vicissitudes of modern life in which people need tangible assistance to get back on their feet or else to have alternative means of survival if one becomes disabled.

    Bottom line is we are all negatively impacted by bootstrap culture. Even the relatively well off and able bodied live with the stress of knowing that an unexpected medical bill or other disaster can wipe out everything they’ve worked hard for and that there is likely no one to catch them.

    I appreciate the emphasis on men here because I think men have been endlessly harangued to talk about their problems as if that alone will fix them. But I think we can learn and extrapolate from this that while women more readily talk about what’s bothering them, that alone does not necessarily lead to improved outcomes when opportunities for tangible assistance are scarce.

  • “Instead what you seem determined to do is claim that psychiatry bodily bestowed those feelings of illness, as if through a transfusion that occurred long before the person even booked an appointment.”

    No. This isn’t what anyone is saying.

    What gets labeled schizophrenia has at least nine known etiologies. No one here could possibly know what the etiology of your particular suffering is or whether a physical illness is involved. I can tell you that Lyme disease has been frequently misdiagnosed as schizophrenia and that schizophrenia patients often respond well to antibiotic treatment. One known etiology of the phenomena with that label is infection.

    Our objections to the DSM labels and “treatments” are that they do more harm than good, they shorten lives, they don’t explain what is actually afflicting the individual and they don’t treat the underlying issue.

    No one here has said what you experience isn’t real and your agency to call it what you wish has been respected. I’m not sure what more you want out of advocacy.

    “I am the first person to say wipe out all of the psychiatric drugs.”

    And someone else out there feels as passionately about their savior drug cocktail as you do about your label and doesn’t understand why you’re coming for their drugs. You’re really not any different than the rest of us except that you want your label. And we are here saying keep your label if it makes you feel better. But don’t assume that label tells you literally anything about what is causing your distress or how it might be alleviated.

    “ They care about being treated equally.”

    And this where you’re positively dead wrong because most commenters here are on the side of expanding the rights and protections for those who present and act differently than the accepted cultural norm for whatever reason – whether they are lgbt or experience extreme states or antiauthoritarian or misbehaving children. Rights protections are fundamental. We might disagree about content or language but if you think the psychiatrists care more about protecting your rights than the people commenting here, I’m going to be very confused.

    Of course, many here are angry and lashing out at having experienced harm from the system and so your lashing out at the activists you seem to misunderstand is not taken personally.

  • Great points!

    Don’t forget how state licensure for all of the counseling professions require demonstrating proficiency in the medical model – in both diagnosis and promoting medication use. So it’s not just the training programs but licensure as well.

    To buck the current system would essentially mean those seeking licensure would have to lie about their actual practice. This isn’t a sustainable model.

  • I would love to see a paper written by those who experience chronic pain so they could explain the physiological underpinnings of their particular experiences.

    “The World Health Organization has found that persistent pain is associated with psychological illness. Individuals who suffer from chronic pain are more likely to be low-income and prescribed differential treatment based on their socioeconomic status. Some scholars have pointed out that a biomedical focus on treating rather than healing pain fails to comprehend pain’s phenomenological nature and has contributed to the opioid epidemic.”

    Respectfully, fuck The WHO. And fuck this painting of chronic pain as a psychological illness not requiring physical treatment.

    My hellish experience with adult psychiatry BEGAN with going to a doctor with chronic pain and fatigue. I had Lyme Disease but I wouldn’t receive the correct diagnosis for 17 YEARS. Instead, I would be given the psychiatric diagnosis of fibromyalgia and poly drugged from the very first appointment. I would be pharmaceutically destabilized with psych drugs, painkillers, muscle relaxers and sleeping pills. Later, I’d receive multiple psychiatric diagnoses. I was placed on up to a dozen drugs at a time, some of which harmed me substantially. My body would continue to be ravaged by spirochetes infecting my nervous system, damaging my joints and my heart, my gut, my eyes. I would spend years in a depression so deep and dark I didn’t think light existed any more which culminated in eight ECT sessions.

    Then I’d walk away from that system, wean myself off the many drugs, find a doctor who listened and finally receive treatment for the physical illness plaguing me. But not before my life had been obliterated, my family had abandoned me as either hopelessly bad or hopelessly mad, I’d lose my children, I’d be brain damaged by ECT, deformed by multiple surgeries, end up with a BMI of 42, and many many times reasonably attempt or contemplate ending that horrific existence.

    It is not hard to find the reasons why Americans experience so much pain and it is NOT all in our heads and it DOES deserve proper medical treatment but the doctors have to be willing to believe people and search for an actual etiology. Instead pain patients are largely pathologized and medicated or else ignored and allowed to suffer. It is a crisis of massive proportions. This paper and these researchers do absolutely nothing to benefit those who are physically ill and experiencing chronic pain.

    The CDC calls us “Lyme loonies”. But with half a million new cases yearly, we cannot be ignored any more and the pendulum is swinging FINALLY in favor of recognition and search for cures.

    How about you tell an interesting story about how the US medical system, private insurance companies and the IDSA has been in the pocket of the US government covering up the biggest medical scandal in centuries?

  • DW, It is my experience that I learn and grow the most from those that disagree with me and force me to defend my positions. I appreciate that not because they are under attack but because it keeps me out of the bubble mentality and the last thing I want to be is a sheep following the herd. I know what I believe and why.

    I know there are many who appreciate your writing here, too, for various reasons. It is delightful, whether or not we’re in agreement. Few have the ability to issue dissent so melodically.

  • I repeat: Psychiatry residents should go into a legitimate field of medicine. Neither diagnosis nor psychiatric drugs provide actual help. They provide medical language to explain what’s wrong with people and drugs to subdue their reactions so that they no longer complain or bother others enough to require such interventions. Psychiatry does not practice medicine, it is a tool of social control.

    What is perhaps debatable is whether social control is sometimes warranted. But we can do better than pretend that mental illness vis a vis psychiatric diagnosis and drugging tailored to specific disorders is an actual thing. If the disorders aren’t real illnesses then drugging targeted to treat specific illness states is not backed by solid premises and the entire construct collapses.

    There could be some room then for an honest discussion about which drugs might have a place in emergency use when someone actually requires emergency sedation or is so chronically impaired that they require some sort of behavioral control at the chemical level. Say perhaps an acutely floridly psychotic person acting aggressively. But I think we’d all be better off if we didn’t pretend that it was medical treatment and just honestly admit that there are situations that sometimes benefit from behavioral control. Then we could start to move away from the idea that some people are mentally ill with a specific diagnosis requiring specific drugs and instead move toward a more compassionate culture with a renewed social contract to leave no human behind.

  • I have to step back here and clarify because I think the comments are beginning to border on the absurd.

    Of course we have to deal with all the other oppressions and traumas that the current system doles out. But it is ludicrous to suggest that nutrition is not a big piece of the puzzle when it comes to surviving the shit we all have to deal with.

    No one is served by the push back being dealt here suggesting that nutrition isn’t one critical aspect (among multiple factors) to surviving traumas.

    No one wants to have to be resilient against structural harm but I’m going to use every tool in my arsenal to survive when I’m falling apart inside. And by that I mean mentally because mental health/ well being/ functioning IS tied intimately with physical health. And mental functioning/cognition is dependent on the brain being nourished. I’m kind of shocked that this is creating controversy.

    The medical model of psychiatry is completely unrelated to other means of ensuring survival, including all of the environmental and social factors necessary for good mental functioning.

    It is throwing the baby out with the bath water to suggest that self care in terms of nutrition, exercise, sleep, social support equates with the medical model.

  • “ A baby is silent. Is a baby’s silence violent? I want to be a baby. If the world were full of nothing but babies we would all live in blissful peace. But people do not want to be babies. They want to be arguers.”

    Babies are anything but silent. Have you spent much time around babies?

    “I do not think Dr Martin Luther King meant…
    “Violence is the language of the unheard so all the unheard should be violent.””

    I don’t think that either. I didn’t suggest that.

    “Given that most eight billion people on the planet feel unheard, if they were all violent that would make for a worse cruel world for kids and frail elderly.”

    Taken to extremes that I wouldn’t endorse either. Although if even a fraction of the unheard and oppressed of the world fought back against their owners, it’d sure be a different place for a while.

    “I prefer to adopt an attitude of mercy. Mercy comes from love.”

    Love and mercy absolutely have their place. Those are not in any way the opposites of fighting back against continued harm.

    You’re not exactly a wallflower. You have vigorously defended your own positions. I admire that about you.

  • I think that people who come across very strongly in these comments sections and elsewhere could be better understood by considering the words of the great Dr. Martin Luther King, Jr. He said “Violence is the language of the unheard.”

    There have been times here that have been extremely heated. Yes, authors take a beating sometimes when their work is torn to shreds in the comments section. But those angry at experiencing the kinds and degrees of harm that the psychiatric system have doled out to them don’t have any patience left for incrementalism or reform.

    Violence – even the verbal kind – does have a place in fighting back against oppression. When authors here, many of whom are graduate students in UMass Psychology use psychiatric jargon and reinforce the “mental illness” paradigm, it does and will elicit push back. That push back comes from ex patients as well as current and former mental health professionals, because it is unscientific. It’s been almost 8 years since Thomas Insel called the chemical imbalance a metaphor and the NIH stopped using the DSM because it’s interrater reliability is very poor besides there being zero attempt to discover etiology besides biological and genetic approaches. There are many other good explanations for what gets termed “mental illness”, and it’s through the efforts of activists that change happens. The foundations of psychiatry are crumbling but you’d better believe that activist organizations that get their funding from Pharma are just as actively trying to keep up the status quo.

    I support activists. I am an activist. I have put my body on the line risking arrest for clean water. I have volunteered for peacekeeping positions at national marches as well as burning man type events. I’ve given at least one interview at an event to protest detainment of a current major political prisoner. I, and other activists, do these things out of love for those being harmed, not out of hatred for those perpetuating harmful systems. There is no agenda toward or dislike of the authors themselves because we are not discussing the author but rather the topic. A diversity of belief and opinion is necessary for a functioning world, but discussion, even when it’s forceful, is not a personal attack.

    There are other sayings that I like in the activist community. Among them “silence is violence” and “if you’re not outraged, you’re part of the problem”. Both are applicable to a lot of the injustices that continue to plague modern life in the US and many other western countries.

  • I have thought the building of apartments without full-service kitchen in NYC and some other places was an interesting development. The idea is that fewer and fewer people are cooking meals from scratch at home and that some buyers, especially younger ones, want to eat communally and would rather eat out, which is much easier to do in a large city with an increasing number of restaurants setting up cafeteria style seating. This was all pre-Covid, of course. 2020 was the year every home cook became a pro-chef and baker when we were largely isolated and home-bound. So, Covid also presents a real opportunity to innovate in the design of new communities in terms of creating more opportunities for inclusion and safe interaction in the midst of increasing climate instability and future pandemics. Open air cafeterias with overhead shelter but continuous air flow could be designed into future construction to make not just dining out safer but schools, businesses, etc.

    The one thing I know is that we need community now more than ever and communal healthy dining could be considered a public health objective to target both our physical but also mental wellbeing.

  • Every single human will develop psychosis under the right conditions. Viewing “mental differences” as a continuum still places some in the bucket of normal and some in the bucket of sick. What we need is to see normal as a continuum.

    What I mean is, it is NORMAL for some people to be very high energy, it is NORMAL for some people to be mostly cheerful and easygoing, it is NORMAL for some people to have sensory issues, it is NORMAL for some people to be introverted, it is NORMAL for some folks to be moody, it is NORMAL for some folks to be sensitive. It is NORMAL for some people to have less energy.

    It is the continuum of NORMAL that needs to change, not the continuum of abnormal. Everyone has a place in a functioning society/culture/tribe. Everyone has strengths and weaknesses. We NEED risk takers. We NEED cautious types. When we learn to VALUE traits instead of pathologizing them then we will be better positioned to address actual illness when it arises. We can’t expect all people to fit in the same bucket. Someone meant to be a firefighter is going to be miserable in a garment factory. Someone else meant to be a farmer isn’t going to be happy working in a cubicle farm.

    We need a version of What Color Is Your Parachute for kids entering education so we can help better determine their strengths and ways of learning and stop diverting the “bad” kids to psychiatry or the justice system.

    We CAN change the way we approach living, learning and working. But it will be a community effort and only happen when enough people say enough is enough.

    We don’t need to feel better about not fitting into the expectations we’ve been placed under. We need to change the expectations!

  • I tend to agree with this analysis Richard. I do think nutrition is pretty damn important and this was driven home to me as a child when I could see the obvious differences between the way the families ate in the neighborhood I grew up in and the one my dad moved to after my parents divorce. There really isn’t any comparing cold sugar based cereal with a hot protein and whole grain rich breakfast, for example.

    But I totally agree with your premise that there are many other equally important points to consider and that boiling things down to nutrition is a bit reductionistic. I do want to say though that I think in terms of being able to strategically, good nutrition and good sleep are probably the basic requirements of good strategy and reasoning. There is only so far you can get with instinct and fight or flight responses.

  • Oh hey, I didn’t mean to imply there is no point to life. That much is obvious. Life is what you make of it. There is no point other than the one you create.

    I meant I am struggling to see the point in trying to maintain any sense of what the culture considers “normal”.

  • I can put on the normal act as well as anyone while I’m ordering takeout! But yesterday I made the choice to spend two hours preparing, cooking and cleaning up after making a pot of homemade chili. That was two+ hours I wasn’t working on or researching needs for my current project or returning emails or spending quality time with family. And that was using canned and frozen ingredients. Making that meal cheaply with dried beans would have meant overnight soaking and an hour cooking the beans or else still putting them in the instant pot for forty minutes.

    Preparing healthy meals takes time! Cleaning up takes time. Most of the time something is getting sacrificed whether it’s nutrition or a clean home or caring for friends and family or sleep. When homemaking falls on one person, it’s a JOB! And I don’t get time off or a vacation from it. So a lot of the time if anything else is going on like the current project, nutrition and sleep are the first things sacrificed. It just isn’t sustainable. And I don’t have enough years of education or letters behind my name to call it burnout so let’s just say I’m a little crazy right now… So excuse me while I put on my happy face and order takeout. Nobody is under the impression that it’s healthy but it’s what I’ve got because I can go without nutrition a lot better than I can go without sleep.

  • Funny you mention control when it comes to diet. I was reading related research that suggests the primary reason people overeat is due to the body’s attempt to acquire micronutrients. So we are literally driven to eat until we acquire what the body needs.

    Another issue here is the fact that intensive farming practices are known to deplete the soil of nutrients and that our plant foods don’t provide the same nutrition they did even 50 years ago. Even a WFPB diet can be inadequate for meeting nutritional needs and require supplementation. At least in the US.

    Food is also part of our social reward system. I’m convinced we aren’t meant to live in nuclear families with us all doing the work and the domestic stuff every day. A more community based approach to meals would alleviate some of these issues.

  • I don’t doubt the veracity of all that’s been presented here. But I do envy the people who are able to juggle long work hours, cook healthy meals, socialize with friends and family and also get enough sleep. I feel like I’m lacking some essential quality that allows the normals to fully participate in modern life where I fall apart trying to do all this stuff. I’m struggling to see the point some days lately.

  • “Root cause mental health care could genuinely help people recover from real disease states.”

    Welcome to the choir!

    To be clear, I think a lot of people are targeted for having very normal and predictable responses to overwhelming stressors. But I am also convinced that an awful lot of people with genuine physical disease states are being misdiagnosed with DSM labels and mistreated with psychiatric drugs which I don’t believe have helped almost anyone over the long term while many continue to get sicker until the underlying cause is impossible to ignore. The medical community doesn’t even have the humility to make an effort to correct the medical record, they just add “Comorbid physical illness” or call it, as in my case, “mood disorder due to a general medical condition”.

    I would also add that assigning psychiatric diagnoses is always wrong because the DSM is not rooted in empirical evidence. The diagnoses are voted on by committee. Psychiatric diagnoses are not discovered, they are created to medically explain socially taboo behaviors and expressions.

  • Stunning to see no replies. I thought this was one of the better articles on MIA recently. And I’ve personally always derived greater satisfaction and meaning from volunteer gigs than paid positions!

    “Dupille described it this way: If being human means suffering and stumbling, it also means moving beyond that and pushing for the good. “We all struggle. We all lose our way at times.” The critical point, he said, is “recognizing the person’s capacity — their potential — to grow and make positive change and to move beyond. Not necessarily to get to a happiness-ever-after, or a pain-free life, but to get to a place and achieve a greater sense of well-being.””

    This is a gem!

  • Steve, your use of the word ALWAYS demonstrates an unacceptable level of black and white thinking, indicating a clear case of borderline personality disorder. Your oppositional nature only confirms the diagnosis. Congratulations, no shrink will see you now!

  • This is reasonable, Steve.

    Of course, if that word ‘schizophrenia’ had never been introduced to the diagnostic lexicon, I wonder what others ways individuals might come up with to describe their experiences that were less destructive. And I wonder if we didn’t have a cultural concept of these experiences being “out of control” or “tormenting” if they would instead present and be perceived more as creative coping or guiding presences. I think it’s next to impossible to extract the cultural influences of such phenomena from our experiences of them and that conflicts with creating meaning out of them. It’s a chicken and egg kind of thing.

  • “The results seem to underline the preventative effects of social programs and policies that address childhood poverty. Instead of addressing how to improve the environments that lead to the development of biological and behavioral changes that undermine public health, the authors instead focus on applying their results to “facilitate a next generation of interventions that improve psychiatric outcomes by targeting brain-to-immune and/or immune-to-brain signaling.””

    This is heartbreaking. Let’s change the body’s response to harm rather than attempt to alleviate the harm, in other words. I weep for the children that may ever be subjected to the targeted chemical interventions they develop. And I don’t hesitate to say that any researcher who prefers to target the immune system’s response to poverty rather than alleviate poverty is a sociopathic monster who has no business being near children!

  • This is slightly misleading. Clinical diagnoses have validity in certain circumstances. Lyme is, in fact, a clinical diagnosis but many doctors withhold treatment if a patient doesn’t meet the CDC surveillance criteria (5 out of 10 specific “bands” must be positive on the blood test), which even the CDC says is designed to be strict so that only clearly positive cases are counted. They estimate the number of actual cases from that strict surveillance count. However, most doctors will not treat unless a patient meets the strict surveillance criteria, so that someone with only four positive bands, or a combination of other bands and only some of the specific bands, will be told their test is “inconclusive” and they don’t meet the requirements for treatment even though THEY ARE SICK WITH LYME.

    So it would be nice to stop hearing this uneducated denouncing of clinical diagnoses as being invalid. They exist throughout medicine.

    The problem is that the ENTIRE FIELD of psychiatry is built upon them and upon clinician judgment of what are normal thoughts, behaviors, and internal experiences. But this is not even remotely possible to do because cultures vary so greatly even amongst themselves. And inequality in western cultures exacerbated this to an extreme. It therefore becomes a tool of social control. What is normal becomes defined by those who are comfortable. It’s the same kind of deliberate misunderstanding as wondering why extremely oppressed people might riot and loot and destroy things when they’ve gotten to their breaking point. But if you have a nice job and your kids go to nice schools and you live in a nice neighborhood and you feel safe in your world, it is all too easy to other those with a different experience. You don’t have to understand them. You have the privilege of not seeing them. (Speaking of psychiatry here, not you, Steve.)

    The point is, there is little validity and heterogeneity among these groups of patients (unlike groups of patients in other diagnostic categories). Doctors and treatment providers pick a diagnosis out of a bucket for insurance purposes, not for treatment of a discreet well-defined illness.

    Clinical diagnosis has utility that shouldn’t be misrepresented in order to make the argument that basing an entire field of medicine on such is ill-conceived.

  • “Moreover, the authors emphasize the role that self-responsibility plays in the process. Individuals stopping medications assert responsibility for their own person and begin to understand the deeper issues underlying their mental health symptoms. Understanding the underlying issues and making necessary life changes is crucial to maintaining a life free of psychotropic drugs.

    “One reduces the danger of being prescribed psychiatric drugs again so quickly if one learns to take one’s own feelings seriously, to follow one’s own intuition, to deal with the meaning of depression and psychosis, to recognize one’s own active contribution to psychiatrization and to look self-critical in the mirror, to assess one’s own vulnerability, to recognize warning signs of emerging crisis situations and to react accordingly.””

    Nothing to disagree with here except for the timeline and the emphasis on individualism. I had to get off the drugs and spend several years recovering from them before I had the wherewithal to create this kind of emotional growth. Psychoactive drugs inhibit these thinking and emotional processes.

    What KateL says above is spot on. I don’t think I could have gotten through that period without the substantial live in support of my (now) husband. If he hadn’t basically forced me at times like an addict to continue on with the withdrawal process, there many times I would have checked myself into a psych unit and gotten right back on the drugs.

    I think this article downplays how excruciating that process is. The best way for therapists to help people off the drugs is to stop referring them to psychiatrists. The way to effect that is to lobby to change teaching and licensure guidelines at the state level that include the drugs as a recommended (sometimes first line) treatment. Second is to lobby your state houses to enact insurance legislation that will allow SDOHs as an alternative to DSM labels to cover payment for social work and therapy.

    Instead, what we get is this:

    “If there’s a true neuropsychiatric sequence after COVID, or there was an underlying health disorder that was not treated in the past if that comes to the forefront, then yes, we have to treat them with medications,” Dr. Shetty said

    https://www.wbtw.com/news/study-mental-health-prescriptions-nearly-double-during-covid-19-doctors-treat-2-types-of-disorders/

    As if ANY of the labels are valid or correspond with manipulating brain chemicals. Therapists funnel patients to psychiatrists because they’re part of the pipeline designed to do just that.

    But here is a real killer. 1 in 3 post-Covid patients are being labeled with psych diagnoses and it’s only the first time for 13% of them!

    https://www.ktsa.com/1-in-3-covid-survivors-diagnosed-with-mental-health-conditions/

    This implies that by later in life (as the deaths ages are skewed for Covid) nearly 90% of us has had at least one psych label somewhere in our file!!! Where anywhere in the literature is this idea supported that we are nearly all “mentally ill”? This is some of the most striking proof, if we needed any more, that life’s ills are being labeled and drugged instead of helped in any meaningful way and that almost all of us are caught in the web.

  • I’m revisiting this thread to add some nuance to the discussion to counter the hyperbole and fear-mongering that has been spread here.

    I have finally received my first Covid-19 vaccine dose. (I’m fine, almost no reaction at all besides soreness at the injection site.) Most of my family was vaccinated before I was even eligible as many of them either work in professions considered “critical infrastructure” or have physical disabilities. My history of “mental illness” was never a consideration for making me eligible. A lot of scare-mongering has been made of this article and the suggestion that those with these labels should be prioritized for vaccination and I believe it was entirely overblown. The facts in hindsight suggest that rather than being experimented upon, those of us with a history of psychiatric labels have probably been the least prioritized for protection in actual practice.

    Something between 3 and 4.5 million people are being vaccinated in the US daily. There have been very few newsworthy adverse reactions. The two shots most notable for those reactions have been the Astrazenaca and J&J vaccines, both of which use traditional production methods. The MRNA vaccines produced by Pfizer and Moderna have had stellar safety records as well as extremely high real-world effectiveness rates in preventing severe illness and death. (Newsflash: That’s what vaccines have always done under ideal circumstances.) Having said that, even the rate of adverse effects associated with the single-shot J&J vaccine are not so high as to make them not worth the risk. Out of roughly 7 million people who have had the J&J vaccine, 6 have had blood clots – a rate of less than 1 in a million. To compare that to the number of Americans who have died so far from Covid-19, that risk is about 582 per million (328 million Americans in the US divided by 563K deaths as of today). Your risk from even the least effective, most risky of the vaccine versions is astronomically smaller than your risk of death or long-term illness from Covid-19. Using those numbers, I’d feel safe receiving any of the vaccines currently available.

    I have been on all sides of this issue. I was very skeptical of the “new” vaccine technology right up until I researched it and found that this method has been in the experimental phase for several decades (https://www.nature.com/articles/nrd.2017.243) and that I know people who have been study subjects in the research that this “new” technology was built upon. All that has happened is that the Covid-19 crisis funneled enough money into it to quickly take that knowledge and apply it on a wide scale. For some contrast, the polio vaccine was developed on a much smaller timescale – about 6 years between the time Jonas Salk developed the ability to grow polio in tissue culture and widespread vaccination. And it sure wasn’t tested on psych patients – he tested it on his own family first!

    It saddens me to see conspiracy theories and borderline paranoia clouding the facts surrounding the Covid-19 vaccine technology when the information about MRNA vaccines is readily available, and the real-world results are so clear, if one only were to research rather than react.

    I hope to encourage anyone still on the fence about receiving the vaccine that it is indeed safe and effective. It is important to base decisions on facts and not fear. This technology is not new and neither is the concept of herd immunity which we will never achieve by allowing the wild virus to run rampant. The race to vaccinate the world and stop the spread that produces new variants is crucial to ending the pandemic. My vaccine protects you, your vaccine protects me. Together, we can stop the spread.

    In Solidarity,
    Kindredspirit

  • This is spot on, as usual, Meghan. And what you say here about connection is why I am such a huge advocate for intentional community. We have been so divided that I think we are all suffering to an extent with the loss of connection and community.

    If I could strike just one phrase from the English lexicon, it would be “That sounds like a topic to discuss with your therapist.” It seems to be the modern version of not “airing dirty laundry in public” – the pretense among polite society that certain topics are too personal or, in modern parlance, beyond the ability for laypeople to help each other with, requiring professional assistance. The feedback loop of judgements -> self-stigma -> isolation -> poor coping ability -> judgements -> self-stigma -> isolation -> worse coping… ad nauseum.

    Where I have become stuck is in developing strong connections. It takes a LOT of time and energy and caring to build up and maintain strong relationships. It’s a lot easier to remain in an echo chamber and in the safety of like-mindedness where you don’t have to do much but except for stay in line with the herd. But God help you if you object to the herd mentality and find yourself alone again because you’ve gone against the group-think. Society has become a bit like perpetual high school. We can do better.

  • DW, thanks. Though I’ll clarify that I wasn’t actually diagnosed with schizophrenia, just strongly warned that I would be if I went to a certain medical institution that didn’t believe in dissociative disorders. Funny that I reject those now as well, and I can’t help but notice the timing of my DID diagnosis coming so close on the heels after I was polydrugged.

    My point about schizophrenia is that it seems clear that a significant portion of that population is living with some kind of treatable medical condition and that if doctors would pay attention to what is going on in the body, more of those folks could be properly treated and regain their lives. Although the results of certain psychotherapeutic interventions like Open Dialogue make it clear that another significant portion is dealing with something psychological/spiritual. In any case, what psychiatry has to offer is not medical care or psychological support but instead labels and altering brain chemistry – neither of which is a treatment of the underlying issue.

    I think it’s also really important that the diagnosed individual retains the agency to make whatever meaning they can from their experiences. It is never my intent to cause someone upset by sharing my thoughts on the greater political ramifications of certain beliefs. Your point is well taken that at least those commenting here have gotten the memo about Psychiatry’s Book of Libels. But I find myself regularly either holding my tongue or starting a dialogue with people close to me about psychiatry, the labels and the drugs, when they start talking about their “mental illness” and their “medications”. And it is clear that the mass delusion about such – at least the way such phenomena are explained by the APA and their DSM – is alive and well. The general public seems to still be under the spell. Certainly, those in positions of authority are happy to wield the labels to maintain control. It’s just in my nature at this point to challenge beliefs about the diagnoses when I see them coming up. But, if the label works for you, by all means. I have certainly had times in my life where I embraced them as well and I understand their utility. It isn’t my goal to remove agency from anyone and I regret that attempts at dialogue – which for me are for the purpose of understanding, no necessarily convincing – become far more adversarial in these pages than they might if we were just sitting over coffee discussing opposing viewpoints, which I think we need to do more of even when it’s uncomfortable.

    As for the lyme, it is maddening in that it is another instance where a medical society is impeding progress. The IDSA acts as a gatekeeper to proper treatment with their long outdated lyme treatment guidelines that are woefully inadequate and downright antiquated just as the APA acts as a gatekeeper for better and radically different care for those in mental distress. I’d go so far as to say there is a lot of appallingly harmful medicine (and medical research) being practiced in pursuit of profit. It’s hard to even blame the individual doctors who have been taught erroneous concepts in medical school and have them reinforced by their respective medical societies. And doctors who have taken the risk to treat patients more aggressively outside of the accepted guidelines have lost their medical licenses. In fact, that is still happening and just did last year to a lyme literate physician in Virginia. And we all see how some professional critics of psychiatry have been ostracized and shamed as at best looney and at worst actively harming people and making people afraid to “seek help”. So I think it’s prudent to be aware of the interests that keep doctors in line as well. You’ll notice that most of the outspoken critics of psychiatry are retired or near the end of their career and no longer have to worry about censure and losing their livelihood for standing up to these Goliaths.

    I did not know that the neuroleptics can cause pericarditis though I can’t say I’m surprised. I’m sorry you also know what it’s like. I remember it being terrifying not being able to breathe when I lay down. But I was years off of the drugs when I developed pericarditis. My case was the result of a hapless urgent care doctor not understanding my massive wrist swelling and throwing drugs at it. The lesson to be learned is that you never treat a bacterial infection with steroids. Or at least not on their own without antibiotics. The steroids suppress the immune system allowing the bacteria to grow out of control. On the other hand, that appears to be what made me sick enough to get properly diagnosed. I had a smoldering infection for many many years (with the medical receipts to prove it), which is the common course for late lyme patients as psychiatric effects are the most common presentation in adults with lyme.

    Anyway, I’m so sorry about your friend’s husband. Suicide is the number one cause of death for Lyme disease. Heart failure and sudden cardiac death are also common among those with late diagnoses. Cancer is also frequent due to the inflammation from active infection and a damaged immune system. The announcements of deaths of well known figures with Lyme come far too frequently to the community. I suppose I know that my days on this earth are numbered even with treatment. Between the damage from years of psych drugging and ECT, poorly treated Lyme and now Covid – which ran through the house in January – this body is just tired.

    I keep raising awareness primarily because the impact of this disease gets far too little coverage in psychiatric reporting – even here at MIA – despite millions of new infections every year feeding fresh victims into the psychiatric system, and medical propaganda that insists lyme is both easy to treat and that the post-treatment symptoms are evidence of psychiatric illness definable by the DSM. The same has been used on those with CFS after Epstein-Barr reactivation and is now being declared about “post-Covid” patients. The bottom line for me at this point is to pushback against narratives that keep people ill – a “mad” identity will never cure a systemic infection, though it may make an individual feel better, at least for a time, about emotional and behavioral effects they don’t understand. And like I said, I’m all for people making meaning of their experiences. But I want to remind that there ARE physical causes of psychiatric effects beyond the typical thyroid and immune diseases and that those people deserve proper medical care that doesn’t dismiss us as psych patients. Although, as one last note, I’ll point out that even when there is a physical cause, it’s common for those people to ALSO be psych treated and psych drugged under the guise that those conditions *cause* psychiatric illness. So for me, all I see is a system that insists psychiatric “comorbidity” is a thing, a system that reinforces the labels and uses the physical illnesses as a launching pad so that either way, with or without an underlying physical illness the drugs and labels are doled out like candy because it is profitable and serves a convenient narrative.

  • Psychiatry doesn’t give a rat’s ass about what is actually wrong with someone, whether it’s trauma or poverty or chronic illness. The entire playbook is individual brain disorders and manipulating brain chemistry or neural pathways.

    Let’s have medical interventions where they are warranted – and I mean truly addressing the etiology of illness, not just throwing more drugs at people to shut them up – as well as psychotherapeutic interventions where warranted and desired. A general approach of healing and empowerment would be leagues better than the rotten mess we have now.

  • Actually, I think “collusion” is a loaded term suggesting that elected representatives are fully aware that the legislated interventions they are promoting do more harm than good. The issues go a lot deeper than that.

    I think we need to look at two factors, the most important of which is the single biggest barrier to almost all legislation and that is whether or not something will bring short term or long term results. In a system where we hold elections every 2-6 years with few restrictions on time limits in office, for most politicians, their main focus is going to be on what gets them re-elected. Those are the projects that appear cost effective with robust short term results they can use in their next campaign.

    The second issue is looking at who they actually represent. In other words, who are their donors? Whose interests are they beholden to? The interests of rural and suburban voters can appear at direct odds with those of urban voters. Rich and poor voters again, different interests. So politicians are going to choose whose interests they are going to value more. It’s not inherently wrong for a politician to protect the interests of the people in their districts. It becomes more of an issue when districts are so deeply gerrymandered that so many politicians have deeply conflicting interests among their constituents.

    It seems to me like a fixable set of issues but there are for sure many politicians for whom ‘corrupt’ is an apt label. One need only look at the mess in Georgia to understand the attempts to suppress the number of eligible voters because when more people are able to vote – especially those for whom voting is more difficult for myriad legitimate reasons (like the urban poor, BIPOC, etc) – those politicians are less likely to win. You could design an anti-corruption course just from studying Georgia elections.

    I think you’re in the UK so the situation is a little different but to be honest, the UK seems to follow in the US’ footsteps so even though you have more protections and more political parties, your system doesn’t seem to work much different from ours. Power corrupts.

  • Evan, I think this is very close to my own understanding of the multiple etiologies and, indeed presentations, of what is currently labeled schizophrenia. It seemed a few years ago that there was going to be a shift in thinking, with researchers declaring schizophrenia amounted to at least nine different diseases/disorders. Except that push seems to have stagnated since. My own knowledge on this has expanded since my lyme diagnosis as schizophrenia is one of the many misdiagnoses of people with tick borne diseases like lyme and especially bartonella. And being infected with more than one TBD is the norm rather than the exception. But most patients who manage to get treatment for lyme do not also receive treatment for the additional organisms they are infected with, contributing to the ongoing symptoms many of us continue to live with. It is unfortunately very common for lyme patients to receive one or more psychiatric diagnoses, including schizophrenia. This contributes to the delay in diagnosis and treatment of the underlying infections causing the psychiatric phenomena. And the failure to treat for co-infections can contribute to ongoing psychiatric labeled illness. I continue to regard myself as lucky to have gone down the DID/Bipolar pathway rather than the schizophrenia pathway, if for no other reason than the doses of neuroleptics are usually much lower for those labeled bipolar than for schizophrenia.

    One of the things in the literature on psychotic disorders that I find especially intriguing is the connection between those disorders and CVD. I suspect a great deal of that is directly due to the social and medical factors that strongly influence those so labeled. The lack of self-care that heavily drugged individuals tend to exhibit seems to be strongly causative from my viewpoint. Interestingly, though, I have independently noticed that when my episodes of derealization are strongest also tends to correspond with noticeable cardiac effects. Since I have been off the drugs for nearly five years, lead a fairly active lifestyle, haven’t smoked in over a decade, and my episode of pericarditis was diagnosed and linked to the active lyme infection, I have no reason to believe that lifestyle factors are related to the cardiac effects I am dealing with. But I am clearly having cardiac involvement in conjunction with the times when the mental effects are worst. Usually severe joint pain follows within a few days. This leads me to believe that I am indeed living with ongoing infection. (I’d like to point out that I received standard lyme treatment of 30 days of doxycycline and NOT IDSA’s own recommended treatment of ceftriaxone infusions for nervous system disease which cardiac involvement always indicates. Like most lyme patients, I was undertreated for the stage of disease I presented with.) So now two years after my lyme treatment, I am slowly deteriorating again back to as sick as I was physically when I was first diagnosed with the lyme. And mentally it isn’t much better.

    So I guess what I’m getting at is that it is frustrating to me to see the sort of either/or approach to these experiences – that they are either psychological or physical. I suspect for many people there is a great deal of overlap between the physical and psychological depending on the specific etiology of the mental experiences. I appreciate that you point out Dr Hoffer’s work on pellagra and B3 deficiency. I get excited myself when I read new advances in understanding on the connection between inflammation and mental experiences as the primary effect of TBD infection is widespread inflammation. I am hopeful that the study of long-Covid will usher in greater understanding of acute and post-treatment infectious diseases and their mental effects (also seen in PANSS).

    I often hear pushback of the trauma/psychological model of psychotic disorders from those with lived experience who claim to have no experiences of severe trauma and don’t believe that is the source of their experiences and my immediate thought is of the other known etiologies of these effects and so I feel a great deal of sadness at the lack of will in the medical/psychiatric community to find what is actually effecting the person from the long list of potential causes that could potentially be treated and bring the person back to a state of health. It also causes me some distress to see the demands for the right to be mad when I believe many more of us could and should be demanding the right to be well – to have our physical illnesses treated appropriately and without psychiatric labeling or drugging. I am not mad. I am lucid and aware of what is happening to me, including mental deterioration during flares of physical illness with lyme symptoms. And like a great deal of lyme patients, being taken seriously and receiving appropriate treatment by a doctor who takes insurance (because so many LLMDs do not) is proving to be a cruel joke.

    I guess you could say I’m on a mission to raise awareness that the presence of physical illness in psychotic disorders merits treatment of the underlying physical illness and not merely attempts to suppress the mental effects (either through psychology or psychiatry) in order to make the person in an extreme state less problematic to the community. Psychiatric drugging will never truly treat the known physical causes of psychotic symptoms and they don’t appear to be very effective for the effects of psychological trauma either. Nor will psychotherapy or mad pride treat ongoing infection or vitamin deficiencies or genomic errors or the host of other known causes of these effects.

    Some days I just feel like giving up because I feel like there is no place for me, that my experiences of trauma, of psychiatric oppression and of ongoing physical illness are too contradictory to various communities to make me an effective advocate for anything. All I really want is to feel better and to help others do the same without being labeled and drugged by one group of dogooders or told there is nothing wrong with me by another.

    Long-winded way of saying I appreciate your analysis here.

  • This is what makes physics so interesting. Physicists seem the most in pursuit of contradicting everything we think we know about how the universe works! They handle ambiguity really well. And you have to be barking mad to even conceive of some of the more recent experiments going on at CERN.

    https://www.nytimes.com/2021/04/07/science/particle-physics-muon-fermilab-brookhaven.html

  • I think lived experience is a useful concept when attempting to gain more control over the policies that directly effect your life and that are being developed by those who have none. It is less useful when one person’s lived experience is in direct conflict with another person’s lived experience. At that point, making an effort to value the diversity of experience and come to agreements that don’t harm or privilege one group over another is desirable but challenging. Many people would consider themselves as having lived experience of help rather than harm from the mental health system and this often places “consumers” at odds with “survivors”. I also think that this is where we can find benefit from evaluating what the long-term data suggest about current methods of help so that someone who has found that help useful in the shorter term can be educated about the risks of that same help over the longer term. Though I don’t think a total meeting of the minds is ever going to be possible and that sometimes knowing the exact nature of another’s experience is less useful than simply connecting with the feelings they have about whatever they’re dealing with since feelings are a much more universal concept. I may not understand exactly why someone is hurting or why what they’ve been through is significant to them. But I can understand THAT they are hurting. So in different contexts, different values emerge.

  • I honestly can’t think of a more ill-fated task for psychiatry than to be charged with researching public health outcomes. Psychiatry has been shown to repeatedly ignore evidence in favor of protecting its guild interests and profit center – drugs. What makes anyone think this will change?

    “There has been a dearth of research on deaths of despair within psychiatry”

    That’s because the main function of Psychiatry has been to medicalize normal human suffering and place the “disease” within the individual. This article shows a clear misunderstanding of the role Psychiatry serves in society!

    “there are other causes of premature mortality such as hypertension or diabetes”

    These are also very closely associated with the same environemental conditions that lead to deaths of despair – i.e., poverty, ACEs, etc. It’s hard to comprehend how a thinking person could view them as a confounding factor.

  • Management of the population is one of the primary demands of government. The basic function of the carceral state – which includes both “corrections” as well as behavioral healthcare – is to keep the population under control. It is in the government’s interest to maintain control over the population even as a portion are harmed by such. One could ask the same kind of question about the “war” on drugs, that educated people know was largely an effort to suppress the Black population and has been assisted over decades by CIA operations in foreign countries to deliberately funnel drugs into US inner cities. Then our police turn around and patrol those places and incarcerate the population, whose labor is in turn exploited by both the state and private corporations. And politicians earn votes for being “tough on crime” and “keeping communities safe”. None of this is a secret. It is also why our “class system” is so effective at keeping us competing with each other instead of following our natural tendency to cooperate for survival. Nobody wants to be the poor schmuck at the bottom of the heap. We give to the homeless and to charity to prove we aren’t like them. But the truth is any one of us could be at any time due to the realities of our economic system and lack of a social safety net.

    I actually believe that this is why so many people fall prey to conspiracy theorists and groups like Qanon. When people know they can no longer trust their elected leaders and government agencies, they are apt to seek out leadership elsewhere and cult-like behavior ensues. In the end, the chaos provides cover for ever greater expansion of privacy-invasion and collection of data in the name of security. It’s a self-perpetuating feedback loop at this point.

    So yes, disabling (maiming and killing) parts of the population serves a very central function of keeping it under control.

  • The notion that one can just change doctors is kind of outdated with modern electronic records. (EPIC really IS epic.) The new doctor is generally able to view other doctors notes about you and will be biased before he even meets you.

    In fact, there really is no clean slate for anyone in the current era. You are who you always were and there is little motivation to change and grow in a culture where you can be canceled for something you wrote or said or thought too loudly when you were younger in a different headspace. That is depressing in and of itself.

  • DW, you certainly seem to be suffering. And you make a good argument for the possibility that the labels were originally meant for the kind of suffering you experience. I have no tangible experience with that degree of psychosis. And I think that those of us who have had the labels erroneously applied also have a right to raise awareness about how the labels function in the greater scheme of things to control social behaviors at the population level.

    But I can’t help but notice that you say everyone has the freedom to describe themselves they way they choose and yet you say that you have no control over how you describe yourself. It seems like you regard others as having more control over their choice of words than you currently think you could have. I guess my inner voice may not be as loud or destructive as yours, but it still tells me to resist these labels and I have learned to listen when she guides me.

    I do very much enjoy your comments and I don’t want to be the cause of your continued upset, and so I can but wish you health and peace and leave you with that.

  • My only problem with others’ choice to accept an othered identity like ‘mad’ is that it does not just identify the individual who doesn’t mind being referred to that way, it effects all whom society has deemed different and to whom they are applied. But they also effect all those to whom they have not been applied as a sort of warning to what could be applied if they don’t follow the social dictates of the era.

    Of course, the social dictate of this era is the absurd notion that someone can identify their way into a group they clearly and objectively are not. And those objecting to the delusion then get more labels. Not very nice labels. Labels intended to socially ostracize them.

    So you see, labels can still actually do a lot a harm even when some don’t mind them or have gotten over minding them. Labels are great when you’re trying to find which jar the sugar is in.

  • Thank you for publishing this.

    The suicide studies hit close to home. Neuropsych effects and suicide are closely linked to the lyme community and I know many late and chronic lyme (stage three and PTLD) patients are also psych drugged. One has to wonder if the drugs are contributing to the high rate of suicide in the lyme community. This disease can be Hell on Earth but suicidal feelings are a lot easier to manage without the disinhibition that comes with SSRIs and akathisia of the neuroleptics.

    I’d really love to have these statistics for all chronic illnesses since so many chronic illness patients are also treated with psychiatric drugs. It would be interesting to know in other chronic illnesses if there is a connection between the psych drugged population and the suicide rate.

  • Steve, science isn’t even about establishing what is true. Old scientific laws and theories are being updated all the time. Science is about developing knowledge through testing and validating hypotheses. A true scientist does not try to make the data fit the conclusion. A true scientist begins with curiosity and when the conclusion does not match the hypothesis, he says “hmm, that’s interesting!”

    Most current “science” is junk because the motive to conduct it is not the accumulation of knowledge but rather profit or prestige. When the advancement of your career depends on you coming up with another tome of bullshit, people comply in the essence of self-interest. Ph.Ds are called “piled higher and deeper” for a reason. There has been a lot of bullshit published in the name of science that humanity could simply compost.

  • Well, I was with you in the first half of this, with the dismay over the American exportation of mental illness and psychopharmaceutical prescribing habits. However, I’m kind of concerned that the steps outlined to address this are solely focused on changing prescribing habits and admonishing folks for wanting to take the drugs when the drugs are all that are available to most people.

    If we are to truly revolutionize the way we approach distress, we must start from a preventive model and not just a response model. A preventive model would begin from the ground up. It would address all the factors that are contributing to increasingly distressed populations. It would address climate change (and consequent weather instability and disasters), the food supply (prioritizing nourishing foods rather than cheap profitable foods), social conditions and community structures (the breakdown of families and communities), the economic policies that produce great GDPs while increasing inequality between the haves and have nots. As Peter Sterling said in his interview, we’d redesign our education systems to meet the developmental needs of children rather than demanding children fit into poorly designed schools that exist to meet the demands of constantly growing economies. We would, in essence, put people and planet before profit.

    We don’t need to revolutionize prescribing habits – we need to revolutionize our entire planet to be people friendly! This won’t stop bad things from happening and resultant distress or the need for caregiving. It won’t stop abuse or illness or disaster or the grief that comes from loving and being loved. But it will provide a much better grounding for acquiring and holding onto the emotional resilience required to survive and thrive in relationship with each other.

    When we realize that multinational conglomerates do not exist to fulfill actual human needs and that nobody should ever have to get stuck in revolving menu hell when calling customer service to the point where they’ve been on the phone for hours and end up screaming at the automated voice on the other end before hanging up in disgust, then we might begin to understand what actually needs to change about modern life to start dialing down the level of stress we are almost all living with and reacting to in some way or another.

    We live in a disabling world because it is profitable. And as we need fewer bodies to perform labor that machines can do more efficiently, it is increasingly profitable to “disable” ever larger percentages of the population through drugging them into complacency with the system and accepting their distress as a personal illness instead of an affliction.

    It shouldn’t be necessary to protect ourselves from algorithms designed to identify and then play on our fears and insecurities, to reward us for clicking, to sell us happiness in the form of things, and to convince us to change ourselves to fit in.

    People didn’t fall into the trap of demanding to be drugged out of their misery because they just want a quick fix! This is literally baked into the design. Misery is extremely profitable and generations of people have been propagandized to believe that competing with each other for more stuff is the definition of a good life.

  • Madmom, I am not defending Oldhead but I can’t entirely disagree with him that additional frameworks aren’t necessary. I would only add that the pontificating by outsiders over the meaning of the experiences of those labeled with madness are not really useful to those experiencing such. The phrase “nothing about us without us” rings true for me here.

    “Caregivers for individuals who tend to act bizarrely are just trying to survive from day to day, trying to maintain a cloak of invisibilty around a loved one because of the risk of psychiatric detainment and chemical straighjacketing is so high.”

    I appreciate this. But I think the needs of caregivers is dramatically different from that of those who are actually living those experiences. I also think that the delineation between caregiver and the person being cared for is sometimes quite fluid. Many people with lived experience of distress are also caregivers – and quite competent ones at that – for others experiencing distress. I am sometimes surprised by how quickly I can shift modes from needing care to providing care. I am also surprised at how rewarding caregiving can be at times while at others, it is very distressing. I think we can honor these experiences in a better way than placing a hard line between caregivers and those they are caring for and without looking to professionals to explain behaviors that those who live them do a fine job of explaining already.

    I also think that you criticize those with privilege, safety and privacy while saying that’s exactly what you’re providing for your loved one. I’m more concerned with those who don’t have someone providing that. We shouldn’t need privilege, safety and privacy!

    The authors here are professionals with a book to sell. They say nothing about their own lived experience or about collaborating with those with lived experience. They researched us and theorized about us and I think the pushback is appropriate. Coming up with ever more frameworks is a pretty good example of the “publish or perish” culture in academia.

  • My mother once explained her concept of the mind to me – that it is the totality of all of the inputs to the collective nervous systems. That’s still probably too reductionist for folks here, but at least it doesn’t reduce it to grey matter inside the skull. And as we learn more about other parts of the body besides the brain – the enteric nervous system and our microbiome – that function independently of the CNS and ANS, I think it’s a reasonable start.

    I’m not at all sure I believe that the mind runs the body, though. I think it’s more like the old adage – I AM my body. Taking care of my body has been for me the foundation of staying well. I am not sure whether it was Sera D. or Meghan W. who wrote about the lengths to which many psych survivors go in their self-care habits, but it rang true for me. When my body suffers, so does my mind follow. And when that is taken out of my control – like how sick I’ve been this year with multiple infections and repeated courses of antimicrobial drugs in span of just a few months, there is no getting around that the mind suffers from the physical state. It seems to me that if the mind really ran the body, then I could just mind over matter myself into wellness. That has not been my experience. The best I can do is keep putting out the spot fires so the whole house doesn’t burn down.

    I also think this is why people who are suffering get upset at notions of self-control. Why people who are severely depressed say if they could get out of bed, they would. And it’s why I bristle at psychological theories that present behaviors at these times as choices. We know enough about sickness behaviors and their evolutionary underpinnings to know fundamentally that the body is responding as it is for a reason even if we don’t fully understand the reason. Non-human animals also display sickness behaviors and it obviously isn’t because of a conscious social conditioning to play a patient role and get better.

    We also know that one of the highest risk times for suicide is during the convalescent period when the body is just beginning to feel enough energy to act on the impulse to end it all. That is why I am somewhat confused by this particular framework presented by the authors here that places extreme states in a bucket of choices like suicide and drug use. It’s far too simplistic and these actions all occur at different times of the coping/recovery process. This is why professionals theorizing about those who experience these states will never truly understand us. They are on the outside looking in on something they don’t know and can only speculate about. Their theorizing replaces one set of labels with another. Psychiatric disorders become “madness” and there are all too many who are ready to embrace the concept of madness when even the authors here admit that “madness” is a rational response to undue levels of stress. (I use “stress” here in the loosest sense of collective inputs.) So again, is it the mind choosing to go mad or is it that the set of inputs to the body result in chaotic processes? I argue for the latter. (I’d also say that whoever designed the BSOD in computing and the task of ctl-alt-dlt to kill processes that are no longer responding understood this on some level.)

    You don’t have to believe in psychiatric jargon OR psychological theories of various flavors of “madness” to understand that inputs = outputs. At best, mind and body are symbiotic. And, you know, I could get behind the idea of neurodiversity if it weren’t used to distinguish “normal” from “abnormal”. If it were truly a spectrum and a fluid one so that it could be normal to be abnormal and to move through states of normal and abnormal as inputs overwhelming the processor. But I find that the labels are mostly used to “other” folks who seem to have reasonable responses to their inputs when those inputs are placed in context.

    I think this also provides a framework for taking responsibility for controlling the inputs. Madness is not something I embrace as a part of who I am. It is, at best, a response to poorly controlled or out of control inputs. It is certainly my experience that the more control I have over the inputs, the more controlled (healed, well, stable) the outputs become. But that’s not mind over matter – mind running the brain – it’s more mindfully attending to matter in a circular never ending process.

  • Very relatable story, Annie. And creatively expressed. You have a gift with words. I was wiping back tears when Maggie died. It must have been a very difficult day for you.

    Congrats on finishing your first year of community college. I hope you will consider continuing on with your education. It is useful in its own right even if you don’t end up taking the path you start out on. If your college has an honors program, you might find honors classes more stimulating and worth the effort. You certainly seem to have the aptitude for it, judging from your writing quality.

    I hope you will submit more of your writing here. I could definitely identify with a lot of what you expressed, as it seemed very familiar to me with some of my experiences as a teen and young adult.

  • I believe good people do bad science under the “publish or perish” conditions in which most academic researchers exist. Other good people do bad science under “do this or lose my job” economic conditions of corporate research. I don’t believe that most researchers who contribute to bad science are personally bad people. Just consider the way this country treats whistleblowers.

    In my experience, people love to speculate about the choices they would make in various situations but you don’t actually know until you’re the one choosing between speaking up and protecting your livelihood. When you’re having to decide if some situation is really all that bad.

    This is a cultural issue where we are all regularly choosing between protecting ourselves and protecting others. I once violated a company policy against telling a security client calling into our inbound call center to escalate to calling 911. I lost my job and I’m not sorry. I don’t know what happened to my caller but I’m convinced her life was in danger. But my managers took me into private meeting when I arrived for my next shift to explain how I had violated the company policy. I was told I could continue on probation or I could resign. I chose to resign. I was a low level employee and a job was a job to me. But for those at higher levels, with more years experience, they have a lot more to lose and may have made a different choice. They may have gone against their instinct and followed policy to begin with despite what they could hear on the line. The point is, we often don’t know the factors that drive individuals to make the choices they do. Good people often make “bad” choices for personal protection. And we need to understand the reasoning before we vilify them.

  • Let me just ask this:

    How do you “treat” a child who is being chronically abused at home by parents and older siblings? Who doesn’t know where they’re going to live from one day to the next because neither parent actually wants them? Who is being chronically bullied at school because they go to school in dirty clothes and unbrushed hair with bad breath and body odor? Who is targeted as a violent juvenile offender when they are old enough and big enough to fight back at home?

    I could go on. Who is it that actually needs treatment in this situation? Is it really the child? Is there never going to come a time when kids’ behaviors are understood in context? How can kids like I was possibly fit into the tidy diagnostic labels matched to treatment methods required for rigorous research? How do researchers control for abject chaos in a child’s life?

    The answer is, they don’t.

    And the reality is that a lot of research is complicated by the inability to control for circumstances in a person’s life. I see the same problems in drug withdrawal research. Investigators treat people as if they are lab rats living under controlled conditions. Whenever I see claims that a person has “relapsed” the very first thing I wonder is what are the external circumstances beyond their drug withdrawal? Are they even safe at home? Why are doctors and researchers so quick to assume that ongoing or recurrent problems are a condition within the study subject?

    This isn’t science. It’s wishful thinking.

  • What a spectacular interview! The more I read about Peter Sterling, the more I admire him and his contributions to humanity.

    For US readers, a point to note is that there is a new name for ‘communist’ living called ‘Intentional Community’. Multiple models exist now from ‘cohousing’ which is roughly translated into building intentional neighborhoods, to shared housing. And multiple style from rural eco villages to urban shared housing to suburban cohousing exist. Many are inching toward reopening to visitors as Covid appears to be coming under better control. Those who are interested in moving toward the kind of lifestyle that Peter talks about might be interested in visiting IC.org to learn more.

    Again, thank you for this wonderful interview. It’s so rare that I resonate so much with a medical professional. We need more Peter Sperlings in the world.

  • “Later, after another terrible crying spell, Ramona’s mother asks her, “What are we going to do with you?”

    Ramona answers, “Love me!” Ramona asked for what she wanted. She expressed feelings that most people bottle up, never admit.”

    https://www.pdxmonthly.com/arts-and-culture/what-ramona-quimby-taught-me-about-taking-up-space

    Perhaps it’s a good time to reread Ramona the Brave in honor of Beverly Cleary’s passing.

  • To follow up on this thread after taking the training, there was absolutely NOTHING in the training itself that in any way conflicted with the goals of survivors in abolishing psychiatry. In fact, I would say that that goal would be reached much more quickly the more the general public had access to these kinds of trainings. I do not view eCPR as an “alternative” to psychiatry but simply a way of life. I am incredibly grateful to those who developed the course as well as those teaching it and those taking the training who will then go on to model the concepts to the people in their lives.

  • Petersen is a good example of a victim of psychiatry who I would not yet label a survivor of psychiatry. He has not (yet) advanced from his victimization to an understanding of what is wrong with that approach to human distress. And certainly not advanced from understanding to application of what he has learned to his own life and his advice to others. Although, I have to say that I am familiar with those early attempts where all you know to say is don’t do what I’ve done.

  • So well said, JC!!!

    I recall my philosophy professor in college who shocked the class by telling us that he was a liberal atheist who’d been married for decades to a conservative Christian and that they were happily married. It was a beautiful illustration that we don’t have to agree on the controversial stuff to be kind to each other and to enjoy common interests. In fact, I’d go so far as to say that starting out this way is probably a stronger foundation than finding someone with whom you have a lot of common beliefs with because you learn how to disagree lovingly from the start and don’t risk growing apart as you mature.

  • Two things come to mind here, Oldhead.

    The first is: sociopolitical activism is not mutually exclusive with receiving or providing needed supports within the confines of “the system” as it currently exists. The system is going to continue to exist and so changing it is the only realistic way forward.

    The second is: don’t stand in the way of those doing the things you insist can’t be done.

    Consciousness raising is but one part of effecting change. You are good at helping folks see how the dots of systemic oppression are connected. But you stand in the way and object when we move beyond that into making actual change. At some point, people have to move past the theoretical, past armchair activism, and create the change they’d like to see in the world.

    The ONLY thing you have to offer here is abolition of psychiatry. Great. I’d like to see psychiatry abolished as well. But that alone will not fix the problems that lead people to psychiatry. There has to be culture change – that will be effected on an individual and community level. That has to be created. It has to be modeled. And then it has to be shown to work so that it can be implemented on a wider scale.

    The idea that systemic supports are wholly unnecessary is foolish. Even my own professional husband on occasion reaches out for help. It’s just that he can do it through an employee assistance line instead of a doctor, therapist or social worker. And he is assumed to have the capacity to maintain his own personal agency throughout the process.

    The suggestion that one cannot be both an activist and promote systemic supports is narrow-minded. In fact, what I have taught my own daughters is that when you want to convince a political leader to change their way of thinking on a subject, you have to be ready to provide an example of a different successful way of doing things. This isn’t promoting “alternatives” to psychiatry. Fuck psychiatry. This is promoting different ways of approaching those in distress. This is understanding that distress is natural and isn’t going to magically go away even if we lived in your version of a communist utopia. This is acknowledging that trauma isn’t going to stop occurring even in an ideal world, that healing is possible, and making sure that the supports exist to facilitate that by creating the changes I’d like to see in the world – even if it’s just my tiny corner of it – are worthwhile endeavors.

    P.S. The way you talk about Matt is dehumanizing and hurts my heart. I think maybe he’d be alive today if he’d had any idea how many people would be effected by his death. I don’t have any claim to have known him on a personal level whatsoever, and yet I know the pain and despair he struggled with, trying and failing to extricate himself from beliefs about his own distress that this culture so strongly reinforces. I can so intensely identify with that struggle and I think so many of the commenters here can identify with that.

    This is precisely WHY we need new ways of responding to and supporting those who are struggling. We need profound cultural change that doesn’t individualize distress (or it’s opposite – success and happiness). Every successful person utilized structural supports that already exist. Joe the Plumber did not build that – to harken back to 2016. He was successful because of the systems that are in place in society that we all contribute to. The individualization – the compare and compete culture – is what needs to change. That is what would have saved Matt and the many like him. This is a struggle I understand. This is what I want to change.

  • It means anyone with a WordPress or Gravatar account who uses the same email address to register on another forum will have their avatar automatically populated and become visually identifiable even if they use a different username and don’t identify themselves as Joe Blow across all the sites they comment on. The entire intent is to identify people across sites. There are even apps that will mine your phone contacts and populate your contacts photos with their Gravatar instead.

    The takeaway is to not use your main email address when registering across sites if you don’t want your normal web activity associated with more controversial stuff like MIA (or anything else you don’t want your boss, your mother or your pastor seeing.) I’m not into constantly curating my image for social consumption, which is the new norm and that’s why this kind of thing bothers me.

  • Thanks, Steve. I have no problem believing that an imbalanced microbiome presents issues with mental functioning. But I was particularly perplexed by the leap to neurodevelopmental disorder and critical windows of development as the culprit. Additionally, the mice whose mothers were given antibiotics during or just before pregnancy and seemed to struggle were assumed to be defective until they were fostered by control mothers and were ok. This seems to suggest that it was the medicated mothers behaviors that was the problem, not the pups own microbiome.

  • I don’t see how viewing oneself as a survivor who was once victimized by something is akin to adopting a victim identity. I DO think that not allowing for the reactions that occur when someone HAS been victimized and calling those reactions a “victim identity” is victim blaming and that it is so deeply entrenched in the culture that we don’t give space for current victims to heal. People who have been victimized often act like it at least for a time. I identify this as the grieving process. A loss of innocence. It takes working through. Not everyone survives. I have, for the most part survived and have written extensively about the factors that facilitated that. I am no longer a victim, I am a survivor. I am also at risk of being victimized by the system again, and I think we are all keen to remember that when we talk about victimization and it’s short and long term effects.

    You may have the luxury of reclaiming your stolen humanity as your experience with the system was decades before electronic medical records, among other things. Those of us more freshly out of the system live in a different world. Neither ‘inmate’ nor ‘outmate’ would be appropriate for someone like me. May ‘21 will mark five years since I saw a psychiatrist. Survivor fits and I encourage others not to fall into the trap of denigrating this concept before fully thinking about what it means.

    There are people writing in these comments sections who truly haven’t made it to ‘survivor’ yet. They are still victimized by the system and trying to find their way out and to something resembling wholeness again. Where they are at is ok too and they deserve support and hope to see what is possible and not to be shit on because they are still responding like the victims they are. It’s not a victim mentality or a victim complex, it’s what victimization looks like for a depressingly long time for far too many people who’ve been badly abused by the system for an extended amount of time.

    As I wrote before, I see the term ‘survivor’ as a triumphant one. YMMV

  • “Mental disorders” are collections of symptoms, with little to no concordance between individuals. “Bipolar” is not a distinct illness, it is a category of similar symptoms. “Schizophrenia” has at least nine known etiologies. Suggesting that “SMD” is now a neorodevelopmental illness is a slap in the face to the millions of severely traumatized children and survivors of childhood trauma who know damn well where the source of their distress lies.

    Reading this site gives me mental whiplash some days.

  • I find Dr Aftab’s interview style to be incredibly manipulative. Putting Dr. Tamimi’s goal to save psychiatrists aside for the moment, I have read enough of these interviews to recognize how Dr Aftab attempts to set the narrative and I am amazed at how deftly Dr Tamimi handled such attempts and how he reasserted his actual beliefs each time. Dr Aftab strikes me as very typical of the psychiatrists I have seen who have put words in my mouth, spoken for and over me, and interpreted my thoughts and actions in ways that completely mischaracterize my own experience and beliefs on such. It almost seems like being a touch sociopathic is a requirement for the job. It’s hard to convey just how uncomfortable I feel reading his interviews.

  • I didn’t have time to read this in its entirety right now but I think it’s important to point out an error here. That some people use disease, illness, disorder and condition interchangeably does not mean most do.

    “For instance, the common cold is usually referred to as an illness, but diabetes is generally called a disease.” These are correct uses of these words according to their definitions!

    There is a very clear line between illness and disease and that is progression. Diseases progress to worse states without treatment or lifestyle changes (albeit, sometimes very slowly.) Diabetes IS a disease. Illnesses on the other hand are self-limiting while the body fights off pathogens. The common cold IS an illness. Sometimes illnesses are severe and disease states minor, but to contribute to the confusion between these without any clarification is sloppy writing and further contributes to the condition (or state of being) that Dr Hickey is alluding to. The fact is all of these words – illness, disease, disorder, and condition – have specific definitions however people use them in ways inconsistent with their meanings at times, generally out of simple ignorance.

    The biggest issue here is presumably with the word disorder because of the judgment it implies about what constitutes an acceptable normal condition. The problem isn’t with the word itself but with the judgements about the individual associated with it.

  • Your fatal flaw here, Oldhead, is in the presumption that you know what other people’s priorities should be. Abolishing psychiatry is a worthy goal but it isn’t the only goal because the need for help doesn’t magically go away with psychiatry gone. Making sure the help people receive when they need it is effective and not more harmful is another goal that some of us have. The idea that natural forms of mutual assistance will just spring up out of nowhere if there isn’t a capitalist government controlling us is ludicrous. Pure and simple. And the idea that capitalism is the mother of all oppressions and when it’s gone so too will be the harm from incest and rape and alcohol/drugs abuse and domestic violence, racism, xenophobia or other power struggles is pure fantasy. And I’m not even for a second going to provide cover for those who do harm by suggesting that they wouldn’t be doing that harm in a more equitable culture because these harms are as old and ubiquitous as humanity itself.

    There DO need to be other forms of help available for those healing from psychological injuries. I think peer work within psychiatry is as nuts as it gets but I am completely in support of survivors or those with lived experience creating and staffing respites and warm lines, crisis response and so on.

  • “Are there psych wards, institutions, etc. that aren’t locked?”

    Insurance rules require that psych patients be in the least restrictive setting possible for the least amount of time as necessary. This is an instance where having very good insurance will work against you. If you have Medicare, they’ll ask to use up your Lifetime Reserve Days, after which, you will find it harder to be admitted. It’s a scam and has little to do with your actual condition. I don’t believe there are inpatient psych units that are covered by insurance that are unlocked because it’s presumed by the insurance company that if you need inpatient care, you’re sufficiently ill as to not be able to walk out safely. However, for cash pay patients, it’s a different story. The Retreat at Sheppard Pratt was still an unlocked totally voluntary unit last I checked. I hope someone else will chime in here if this isn’t accurate.

  • Survivor works for me, tyvm. It is a triumph over oppression and systematic harm. I don’t quite understand the recent shitting on that term as a concept. I am sorry for those who are still struggling within the system or with their anger at the system. I agree that not everyone who has left psychiatry has become a survivor and I think the anger that a lot of us experience when we do get out and off the drugs successfully is simply grieving all that was lost. But you can’t unpack and live in grief forever. This is something I know a lot about. It will eat you alive. Forward motion is healing. Every forward motion, no matter how small.

    There’s nothing wrong with being a victim. Grieving is necessary. But I am proud of all I have survived and I’m not giving up the term psychiatric survivor. I am ok *most* of the time. That’s significant and my triumph to own. Other folks’ mileage may vary.

  • “Let me explain that I was not even angry – some people simply claim for some reason that I am speaking too loud”

    Joanna, I sympathize. I have had mhp suggest that my loud speech is evidence of bipolar or emotional upset and suggest I calm down. But have you had your hearing tested? I have moderate hearing loss and have developed a strategy of asking people to speak up when they tell me I’m speaking too loudly. You *may* be speaking loudly in an attempt to raise the volume so you can hear better. At least, it seems that was what was happening with me and I wondered if that might help you.