Friday, March 22, 2019

Comments by kindredspirit

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  • Steve, one more point is that you can have more than one cause. You could have ACEs, be in an abusive relationship, be poor and homeless, and also have an infectious illness (or any other combination of factors.) The current system doesn’t bother to take any of the potential causes into account. It just labels the patient crazy and drugs him. If he’s very lucky he also gets a decent therapist. And if the patient objects to the treatment or doesn’t improve, the system doubles down on more of the same and becomes ever more coercive and abusive. This is what’s wrong with psychiatry and the DSM. It’s not that there are no physical causes of emotional or behavioral issues, it’s that the known physical causes are largely ignored in favor of creating the ruse of a lifelong patient with a heritable “mental disease” treatable by pharmaceuticals.

  • Actually psychiatry’s crime is assigning the emotional/behavioral manifestations of PHYSICAL illness to symptoms of a discreet mental disorder.

    Using myself as an example, Lyme disease mimics every label in the DSM. Treat the lyme infection and you will also treat the inflammation that causes the depression, anxiety, depersonalization and psychosis that can present either as primary symptoms or alongside physical symptoms of Lyme such as arthritis and carditis. But at no point are those emotional and behavioral symptoms a discreet “mental illness”. It’s a physical illness that can have emotional and behavioral manifestations.

    The DSM-V also introduced Somatic Disorder which is just a new way to dismiss women’s medical illnesses since the old wastebasket diagnosis of fibromyalgia has been generally accepted by medicine due largely to patient pressure and the validation of pharmaceutical approval for it.

  • Megan, your situation is heartbreaking but your conclusions are spot on. I especially appreciated this bit of analysis:

    “Part of the reason we all have such a hard time getting along and living in peace with each other is because we disagree on personal agendas as if there are absolutes in this area. We are so blinkered by capitalism’s saturation and individualism’s permeation that it is hard to imagine a different definition of caring for oneself than “being able to obtain food, clothing and shelter (without assistance) and pay your taxes.” Nearly all social services are built around attempting to help people become productive members of society to the extent they are deemed able to do so. Telling people how they need to care for themselves and then punishing them (while calling it helping) for not complying with an external definition is obviously contradictory.”

    You also say that too often the helpers fail to respond in helpful ways, often they respond in ways that invalidate and further harm the victim. I hear you and I agree. Humans are not capital, relationships should not be transactional, help should not harm.

    Thank you for writing about these issues, especially abuse of power, and speaking out about harmful “help”.

  • Starr, I so appreciate you sharing your experience on the keto diet. I want to congratulate you on finding and sticking with a diet that helps you feel your best.

    I want to add that I experienced a similar boost in physical health when I switched from a meat centric diet to a plant-based diet. I initially became vegan for ethical reasons but the boost in my belief that I was doing what was right for my body occured when my acne went away, my cholesterol and triglycerides normalized, I stopped battling obesity, and I just felt significantly better.

    My doctor had told me that my total cholesterol was 190 and that I was a candidate for Lipitor. I went back about ten weeks after cutting out animal products, and had completely reversed my numbers. My doctor said to keep doing whatever I was doing. And that’s what I say to others.

    The single best advice I’ve ever received on diet is to forget the fads, and simply to eat and do what works for you and your body. If you make a change and you still struggle with ill health, try something different until you find the diet that works best for you individually. I don’t believe there is any single diet that is best for everyone. Always, always, always listen within. 🙂

    P.S. The Westin A Price Foundation was where I got my understanding of the necessity to eat a whole food diet. Absolutely fantastic resource and I wanted to boost the signal on it. Obviously they wouldn’t agree with cutting out meat and dairy but a lot of their message is based on ideas around whole foods and slow foods and that approach, with or without animal products, is going to be a far more nutritient dense way of eating and nourishing oneself. And the result of eating nutrient dense foods speaks for itself.

  • It begins and ends with the environment: traumas (ACEs, poverty, chronic stress, etc), dietary deficiencies, microbial imbalance, infectious diseases, it isn’t a competition. But the one thing that keeps eluding researchers is a bad gene that could be altered or eliminated.

    To think we could fix human dissatisfaction and deep distress over the ills of the world with drugs was folly to start with. That researchers ever seriously thought they could pinpoint a gene to finger as the culprit of human distress while the world literally burns around us was hubris on a grand scale.

  • Neuroleptic is actually the medical term for antipsychotic drugs. It’s not a definition up for debate. Sorry, Alex.

    Neurotoxin and neuroleptic are not interchangeable and Bing’s definition of neuroleptic is medically, scientifically incorrect in its generality. Yes the neuroleptics are called major tranquilizers but they are a specific class of medications.

    I cannot have a discussion where the terms used depart so dramatically from their scientific meaning.

  • I had a dedicated counselor in the disability support services office in my community college who took one look at my entrance exam and marched me to the honors center to personally introduce me to the director of the program and convince me to sign up for honors classes. She could just as easily have decided to steer me toward easy courses just to get me through school, as others had done in the past.

    My experience at university mirrors others who say they were ushered out with forced leave at the first hint of trouble. I never went back to university after taking what amounted to forced leave from my first semester but I’m still damn proud of my AA degree, and graduating from my colleges honors program.

    Some students need more support and all too often what they get is a message that maybe they aren’t college material and told to go home and this has long term consequences, not just for the students emotional well-being but for their economic prospects as well. It’s a devastating blow that many don’t recover from.

  • Let’s not confuse psychiatric drugs as a category with neuroleptics as a class of drugs under the psych umbrella. Neuroleptics are also known as antipsychotics. Many many psych patients have not been prescribed neuroleptics/antipsychotics, which are usually used as an adjunct (secondary) treatment for “mood” disorders, and as a primary treatment for “psychotic” disorders, but which would not usually be given to someone for garden variety depression, though it certainly happens.

    Kids and seniors are more likely to be given a neuroleptic for behavior control of ADHD, OCD, or dementia without an SMI diagnosis.

    Steven, I assume you were referring specifically to neuroleptics and not saying you were completely psych drug naieve.

  • It doesn’t matter that it’s a sample population. It’s a population that’s been harmed by neuroleptics and there’s physical proof of the harm and your arguments that the proof of that harm is somehow not reliable is illiogical. I’m stunned. Totally done here.

  • Vikki, it depends on the individual response to tapering. is the authority on helping individuals taper off of psychiatric drugs, but each taper has to be done individually. There’s no formula that can predetermine how strongly someone will respond because so many factors are involved, for example, the length of time the person has been on the drug (or on similar drugs) and the dosage at the time tapering begins.

  • Alex, the problem with your position in my view is that you can’t refute what you see happening on brain scans. So you either believe it is due to the underlying disease process or you believe it is due to the drugs themselves. The fact that schizophrenia patients have long documented hard evidence of shrinking brain tissue isn’t disputed anywhere as far as I know. The only scientific dispute is the cause.

    There’s little to be gained by saying that you don’t believe you experienced brain shrinkage from the drugs because of course not every brain was damaged in that way but the studies showing brain shrinkage in this cohort are pretty solid.

    And the fact that a study designed to show the neuroleptics weren’t the cause but instead showed they were is solid evidence. It seems you can’t accept that others may have been harmed in this way because you don’t believe you were. I’m trying to understand this position and failing.

  • While I applaud your attempt to help kids avoid psychiatric treatment, none of these things you suggest will address the source of behavior problems, which is universally in the child’s environment and needs to address the family problems leading to difficulties with school. One of the things that made school life difficult for my sisters and I was consistently going to school hungry and with dirty bodies, smelly mouths, tangled hair, and dirty clothes. This led to horrific teasing from the overwhelmingly well off kids in our classes, usually not in places where adults were around to witness, like at the lunch table, in the bathroom, on the school bus, or on the playground.

    As long as we target kids for intervention, we miss the source of the problem.

  • If you’re taking psych meds and experiencing neurological issues, expect to be told it’s a side effect of the medication and dismissed.

    When I started having serious eye issues again, and balance issues worsened, and was having facial numbness, I went to a neuropthalmologist for screening for MS. He looked at my eyes and did an MRI, then told me the problems were side effects of Lamictal. While they may have been exacerbated by the drugs, they were symptoms of Lyme disease and no one cared enough to dig deeper because I was just a psych patient.

    The drugs do damage, absolutely. They also cover up symptoms of underlying illness. How convenient.

  • A conspiracy is precisely what it is Rachel.

    Americans have been socialized to participate in a capitalist state and to willingly give away the value of their labor to the corporations running the country.

    Any attempts at collectivism have been squashed repeatedly by our capitalist government. So a collectivist approach to emotional distress and trouble in the community has been socialized to us as pathological and we are cultured to distance ourselves from that and to leave it to the professionals – who are waiting to capitalize on the very distress the system creates by design.

  • Jan, you remember how many people signed up to live in a cave with me, right?

    I do think that this is a viable model and my husband would love to join an intentional community – has been pushing me in that direction for years – but I want to create an intentional community with people I know and not join a commune of strangers.

  • I don’t want to step on your toes here, Oldhead but it sounded to me like the only thing he was “having” was a rough time and he went to people who had previously promised to help him by talking about his problems and instead he was targeted as crazy and given drugs.

    I mean, maybe the author does believe in such a thing as “mental illness” but his point was that the systems set up to “help” do harm by pathologizing situational distress as symptoms of disease. That’s an important point, regardless of whether he thinks other people might have something called mental illness. He recognized that he was situationally depressed, not mentally ill, and the place that told him to come to them in that situation played a bait and switch.

  • What utter nonsense. I played hooky on less than a handful of occasions. I missed school because I was a chronically ill child often in severe pain that was adequately addressed, medically mistreated by a pediatrician who was later put out of business with a class action lawsuit.

    I slept poorly due to congenital defect that caused sleep apnea, snoring heavily and choking in my sleep for as long as I can remember. I struggled to get out the door on my own at 8,9,10 years old, because no one was home. I sometimes missed the bus and I couldn’t remember the way to walk to school, which was in another neighborhood despite having an elementary school five doors away from my house and ridiculous school boundary lines. I was hungry because my mom would sometimes sleep at work and buy herself takeout and the only food to eat was dry natural peanut butter, moldy bread and spoiled milk. My (much) older siblings thought it was funny to tell me the food in the fridge was poisoned so I wouldn’t eat what little there was for them. Sometimes I didn’t go because I didn’t have lunch money and the school had a policy that a child couldn’t skip lunch, so I’d be sent home with a bill for my charges lunches and I’d get spanked for charging lunch that my mom couldn’t pay for and my piece of shit father spent his money on sports cars and satellite dishes instead of child support.

    This is another of your attempts at a simple answer Frank when issues affecting kids and families are complex.

  • I’m not on board with the sheriff references but Steve McCrea has done an amazing job as moderator and I’d be the first one to sign up for the Moderator Steve Appreciation Society. No offense to Emily Cutler before him, but Steve has excelled in this role and has really done an upstanding job in an impossible position.

  • As a person with a high ACE score who received all of these intensive interventions, these researchers are barking up the wrong tree. Spending a lot of money to intensively intervene adds harm when you need to improve and help the FAMILY not the CHILD. ALL this is going to do is funnel more kids into care and treatment. California fucks everything up. Why don’t they try to figure out their homeless FAMILY problem instead of targeting kids. They don’t even have a plan and all the prognostications about biochemical changes in the brain is taking the biochemical model of “mental illness” and putting a pretty bow on it and calling it progress.

    Why don’t these people ever listen to the adults who as kids were harmed by these shitty interventions?

  • I identify as an artist. Unfortunately, the medium I’m most skilled with has been too hard on my hands for several years now.

    The concept of a stay at home parent has been traded for the push for guaranteed childcare and birth to 16 public “education”, as New York is attempting to implement. I think that abdicating responsibility for raising one’s children to the state has been one of the worst mistakes pushed by liberals.

  • There was a compelling study on crime in Richmond, CA that showed that providing a basic income to former offenders works to deter crime as well.

    Should we be locking up record amounts of people and paying for profit companies to run prisons, or should a basic standard of living provided directly to people who would offend to get their needs met otherwise a more reasonable violence prevention measure? It depends on whether you want to live in a punitive state or a compassionate one.

  • The problem is not that there are people who are legitimately disabled, the problem is that the current system thinks forcing these people into poverty is “helping” them. Our current notions of “help” leave vulnerable people in positions where they are easily coerced into giving up their decision making rights.

    I don’t need independence in the name of liberty. I need not to be harmed by the system that purports to help those who cannot necessarily be entirely independent.

  • Rachel, I get the same questions but with autonomic neuropathy I struggle to stand for just a couple of minutes. In fact, I cannot stand for a prolonged period in one place, and must walk around or my blood pressure tanks and I pass out. But even walking makes me so exhausted that just taking the dog out to potty (which thankfully I can do again) necessitates laying down for up to an hour afterward in order to stabilize my nervous system, stop the shakes and dizziness. I also struggle to maintain a consistent core temperature so I become overheated extremely easily and also get chills quickly, both of which can cause blackouts with little warning. But I look able bodied and that’s all that matters to people who think they can judge illness severity by looking at you.

  • Yes, indeed, a universal basic income makes people happier. But it doesn’t make them more likely to become employed. So depending on the measure you choose, it’s eother a success or failure. Now we can’t jusy have a happier populace. What good is that? They wouldn’t need all that very lucrative mental healthcare.

    What’s really better, spending the money on people directly, or spending it through the for profit mental health system which causes physical disability and necessitates even more peripheral healthcare spending?

  • Actually, I would go so far as to say the entire entertainment industry serves to keep people pacified and stupefied. People work hard for very little and in return they “deserve” to be able to “relax” and “unwind” with any myriad forms of entertainment, whether it be watching gladiators (live or on TV), or dramatic performance (theatre in all its forms), or artistic display (live or curated), or thrilling fun (theme parks), or majestic adventure (nature settings), we have a variety of “approved” ways to “spend” down time, emphasis being on spending – both our time and money. We consume our “free” time in pursuit of our right to escape the horrors we have to ignore on a daily basis in order to participate in the modern world.

  • No, the media’s “job” is to entertain. It’s not to bring news. It’s not to inform. It doesn’t have to be truthful. It aims for ratings, which equal dollars. There are no ratings incentives to bring stories about psychiatric harm because the public have bought hook, line and sinker the notion that psychiatry is a necessary evil at worst and the savior to all those disturbed people at best. Coupled with a widespread belief that good things happen to good people and bad things happen to bad people, thus the system flourishes by encouraging society to eat its own – social Darwinism.

  • I don’t agree that having a job is a good thing or that self reliance is a good thing. Neither is good or bad in and of themselves. It’s the way the system leaves vulnerable people behind that harms us. I think we need less bootstrap mentality and more collectivism.

    To be honest, I don’t really give two shits what anyone thinks of the “chronic disabled”. The fact that someone has received disability for a psychiatric diagnosis does not preclude them from having a physical disability as I do, and as so many who spent many years medicated have disabling conditions related to the years of drugging. I’m with Oldhead on this – consider it reparations. I’m not receiving disability anymore, but even if I weren’t physically disabled, I sure as shit am not about to labor for a pittance in order to generate profits for large corporations. Even on my best days, I wouldn’t stoop to that level. I’d end my life before I’d stoop to being a slave for the corporate state.

  • Thank you for posting this Johanna. I’ve link hopped back over to Dr Wible’s article on med students – 75% on psych drugs? Wow.

    At some point the house of cards is going to collapse. This “happy depressed patient” narrative has been running strong in the news over the past few weeks. The industry is grasping at straws (note yesterday’s NYT article on slow tapering) and all of us “in the know” have to keep the pressure on.

  • I also think that on International Women’s Day, MIA missed an opportunity to present a blog about women and girls, and our incredible resiliency in the face of centuries of struggle (millenia?) for not just equality but for equity in a man’s world. The female experience has largely been pathologized, and here we are today, the one day the world stops to remember half of its inhabitants don’t have a penis, only to be presented with a study done mostly on boys.

  • I’m glad I was a drunk as a teen instead of a pothead because it allows me to generally dismiss all the dire warnings and prognostications about long term psychosis risk for teens smoking pot.

    I’m pretty astounded that the genetics industry has been warning for years that giving people genetic risk information without counseling can cause undue worry about their actual level of risk. But we plaster warnings about psychosis and early intervention everywhere and make kids lives miserable with all the psychiatric fearmongering instead of just letting them be children.

    If we’re honest with ourselves though, childhood has been a myth for a long time, hasn’t it? We charge little kids with murder. We send kids to jail for not reciting the pledge of allegiance or for making a clock. We make them compete for everything because we live in a world of artificial scarcity so we introduce them to this toxic competition from an early age and subject them to it on a daily basis. We don’t provide the security that children need to grow up well adjusted. And then we shame whole generations for being products of the toxic environments we’ve forced them to live in.

    Fuck early intervention. My whole childhood was made up of this shit. If I’d have been born a decade later, I’d have been heavily medicated from an early age instead of just therapized ad nauseum.

    It’s time to let kids be kids again. Focus on making the parents and the environment better and the children will be a product of that effort. Focusing on kids with any amount of “early intervention” misses the target.

  • Sidney Sugarman said to teach the children how to think, not what to think. America did the opposite. Teach to the test, no time to discuss why or how or answer any questions that a curious student may have. Facts and figures are all that’s left. Many students do poorly with rote memorization but in our attempt to fix our schools we broke them with just that. Tests and measurements all the time. No wonder kids are sick anxious and depressed. And I’ll add that teaching to standardized tests was a major issue well before NCLB blew up any hope of fixing what’s wrong with schools. My parent friends were complaining about homework burden and teaching to the test way back in the 90s.

  • I’m of the opinion that being interdependent upon one another is a good thing. I think living in family units is far healthier for us than our current notions of stable independent and singlehood. I also think that we’ve been subjected culturally to an extreme amount of shaming and “bootstrap” thinking if we need help.

    Where the problem seems to arise most for people is when there is a mismatch between family expectations and individual needs or desires. Some families are extremely closely connected, live near each other, all pitch in during times of need. Other families are spread out geographically like mine, not well connected, and value independence over cooperation and don’t mind leaving an individual member out to die if they can’t survive on their own.

    I think when we talk about disabled people, whether or not they have a psychiatric diagnosis, having “learned dependence” we also need to identify where we fall on this spectrum of belief about whether we’re part of a team or lone agents as were in all likelihood projecting our own values on others which they may not share.

  • Rachel, that’s a little more than I received last I was receiving disability. That’s why I say that the system is designed to keep people in poverty. There are only two ways to not be impoverished on disability. Apply by age 22 and receive it based on your parent’s income. I would not have been so poor if I’d applied six months earlier as it would have been based on my father’s many years receiving a federal paycheck. OR, become disabled at a later age when you have accrued enough work credits to receive a full SSDI check. But then you will have to pay your Medicare premium and copays and that often brings people who don’t meet the poverty threshold otherwise back down into poverty.

    I remember being responsible for half the bills and not having enough left for almost anything else. I have had to use food banks and remember clearly the time I went, it was right around the recession, and there was no food but they had plenty of Easter candy. So my “food” from the food bank was a grocery bag filled with various chocolates.

    When I started looking for subsidized housing back around 2008, there was a five year waiting list in Maryland. Last time I checked around 2015, the list had been closed for years because the need was so great and the supply so short.

  • Again, orthomolecular treatment doesn’t cure Lyme disease any more than ECT or antipsychotic drugs. Lyme disease commonly mimics psychiatric illness. It behaves in exactly the same way as late stage syphilis which is what filled lunatic asylums until a cure was found.

  • My ex boyfriend never experienced a reaction to seldane and it was the only medication that ever proved adequate for his rhinitis, which was severe. He was bitterly angry that the FDA withdrew it from the market in 1997.

    Darvocet is the only narcotic pain reliever I can tolerate but it was removed from the market in 2010. I can’t take NSAIDS because they damaged my stomach severely and I can’t stand the effect of other opioids. I did not get a choice to continue taking the one pain medication that worked for me. But that’s how the FDA is supposed to work, unfortunately for me in this case.

    Decisions made by federal authorities are supposed to be for the benefit of the masses to protect from widespread harm even if a select patient group isn’t significantly harmed or doesn’t mind being brain damaged in order to avoid having to process painful memories.

    I’m sorry if that sounds harsh, but your right to inflict a brain damaging operation on yourself doesn’t supercede the rights of others to be protected from such barbarity.

  • Anderson Cooper is a mouthpiece for the establishment and exists to fill the gay pretty boy niche for the Clinton News Network’s white liberal viewership.

    Whether it’s BBC, RT, or AlJezeera, you’ll find more truth if you ditch what passes for American mainstream corporate journalism, and that scorn includes our corporate funded National Propaganda Radio.

  • I was convinced to try ECT by my husband after he watched that dreaded TED Talk by Professor Sherwin Nuland; may he rot in whatever Hell he subscribed to during his miserable lifetime.

    I have heard others who also were convinced after watching his video. Frankly, TED lost all my respect after this. This is not an idea worth spreading and they are directly contributing to the harm of many by keeping his talk available to the masses. I will never watch another TED talk. It’s proven itself to merely be another propaganda delivery method.

    I don’t think I “deserved” the damage that was inflicted on myself or my family simply because I believed someone who had been given such a large platform to spread his harmful idea.

  • Hi Nancy,

    I think we’re talking past each other here. You have replied to ex patients discussion of mindfulness classes in mental health treatment settings as if your own community practice is being attacked and I’m confused.

    You’ve misinterpreted my statements on spirituality and ritual to indicate some kind of religious feeling or belief and I wonder if you know you’re talking to an atheist? I don’t need the lecture about how some people don’t like religion. Pffft!

    The fact remains that the way I experienced mindfulness taught in a mental health setting was not in any way useful to me. My experience wasn’t as egregious as Rachel’s but her experience is valid too.

    I am aware of Jon Kabat Zinn’s work on MBSR. Nothing I stated invalidated MBSR, since that isn’t what I have been exposed to in mental health settings which I still stand by calling it a bastardizarion of of the mindfulness that results from a personal meditative practice.

    (I realize that my comment above is nestled under yours. I wasn’t intending to appear to be replying to you. I was intending to be replying to the conversation and to back up what Rachel experienced. Sorry if it appeared I was directly replying to you.

  • Hi Lee,

    I understand why you interpreted my comment that way. It was not meant as an assault to your personal or professional integrity.

    I think what I find distasteful about it is that just because the evidence doesn’t show a child was molested, the lack of evidence doesn’t disprove the child’s accusation either. And because this lack of evidence doesn’t disprove anything, there are going to necessarily be some cases where a child was indeed molested and someone is getting away with it due to lack of evidence. And I am familiar with that outcome. This is why I made the comparison to the defense attorney because his job is equally fraught with the potential that some of the clients whose cases he wins will actually have been guilty.

    Outside of my own opinions about the potential harms that can be caused during a sex abuse investigation, there is a pervasive attitude in this country that some accused don’t deserve a trial or defense. Mention child molestation and there’s always someone there to say “he don’t need no trial. I’ll take him out back and kill him myself.” (An understandable but deeply flawed reaction.) And that’ll be rewarded with a “Right on, brother, I’ll help you clean up after.” Vigilantism is rooted in deep primal parts of the human psyche. And so pointing out that we have a justice system, with all its flaws, and that everyone deserves their day in court, is not a popular position.

    I really wasn’t commenting on your cases specifically, merely acknowledging the visceral reaction that people tend to have just at the mention of defending an accused child molester. I would think you’ve probably encountered some of this. I think saying it was distasteful but necessary acknowledges the discomfort many feel about the subject while continuing to stand up for justice.

  • Dr K, I have to agree with everything you just wrote about this belief spreading like a virus throughout our society. And I’m equally out of ideas for how to stop it.

    I used to be part of what was, at least at the time, the largest bipolar group on Facebook. Around the time I started tapering off meds, I asked in the group who else was med free. I was looking for support going off meds and had not yet heard of places like Merely asking if there were other med-free patients in the group (and sharing some of the dangers I’d learned about the meds from RWs book) got me banned from the group.

    I believe that you have pointed out all of the players involved but the next step is to break down each group and figure out why that group is promoting this idea. Is it for personal financial gain, like on the part of pharma and psychiatrists? Is it the SJW perspective parroting what they have been told to think about what oppressed people need or deserve? Is it a politician pretending to care about a special interest group to get your vote and using an emotional argument to elicit your concern and elect this dogooder? Is it a parent – abusive or not – struggling to care for a child that is mismatched to the environment it is living in? (I suspect there are fewer hyperactive kids diagnosed in families that get more physical activity than average.) Is it a misguided child protection advocate who wants to see more mental health care in schools because they believe in the myth of “early intervention”? Is it the law enforcement agency who is overburdened with calls relating to domestic disputes and people in extreme states? Is it the teacher who is overwhelmed with 58 third graders and who can’t handle one more student’s distraction from teaching material the kids are going to be tested on and which her job and her school’s funding depend on higher results than the last year? Is it the media who gets a significant amount of revenue from drug company advertising being unwilling to bite the hand that feeds it with accurate coverage? Is it the Wall Street executive averaging 12% per year returns for his clients whose retirement accounts include shares in pharmaceutical manufacturers? How about the revolving door between government regulators and the industries they are charged with regulating. The FDA has had no shortage of complaints about being too cozy with the pharmaceutical and device manufacturing industries. Was it the deregulation of pharmaceutical advertising during the Reagan years that resulted in the American public becoming saturated in advertising about illnesses they didn’t know they had and a suggestion that they ask their doctor for specific medications to treat it? Or is it the websites of an investigative journalist who wrote an expose of the crimes of the pharmapsychiatry conglomerate and insist on continuing to rethink the problem instead of staying the course on behalf of the current and ex patients they once revealed had been so deeply harmed?

    And that’s just what I can think of right off the top of my head. A deep dive into this issue I’m sure would produce many more books on what’s wrong and how it got that way. But it’s hard to really judge how many people are listening or how bad it will have to get in terms of how many people are harmed before there will be significant pushback.

    Most people I know are unhappy – that includes rich and poor, disabled, working class, and professionals. Most are worried, overworked, in some degree of ill health. But we’re still poorly connected to one another because the tools we are largely using to connect like social media are thinly veiled arms of the state and purposely keeping us compliant and pacified.

    I’m rapidly coming to the point of thinking that if you don’t sound like a conspiracy theorist, you don’t truly understand how deep these problems really go.

  • Ok last link. This one with more information about how the government is collecting and aggregating this data – the author calls it the “government EHR”. (The notion that it’s for greater patient access to their data is a myth and propaganda used by CMS and ONC to sell it to the American people and legislators via the ACA and then further in 21st century cures act.) It also reinforces what I’ve been pointing out about physician burnout and the contribution of the EHR in that, because I think most of us are familiar with a doctor having their head in a screen for 90% of an office visit. (I haven’t had an actual physical exam by a doctor in years. They don’t touch their patients anymore as far as I can tell. No sink to wash hands, often not even hand sanitizer in exam rooms. Where on earth would they find the time?) I’m definitely buying the book that was mentioned: Big Brother in the Exam Room.

  • And Julie, something else you may not be aware of: you cannot sue a provider for violating your HIPAA rights anyway. So what is the point of having rights? ‘You’ have ‘rights’ so that the government can extract fines from providers they determine have violated the rules. This amounts to a tax and has nothing to do with your privacy or remedying the harm that comes to specific patients.

  • Not using insurance is not good enough. I paid for an urgent care visit last summer with an HSA debit card (the equivalent of paying with cash). I found out about two months later that they still attempted to bill Medicare for the visit.

    I’m sure there are underground physician networks (likely in communities of color) that I may have to explore. Ever watch that episode of Weeds where Marvin got shot and U-Turn gave Nancy directions to drive to the doctor that doesn’t keep records? This is what those concerned about their privacy are going to be driven to do.

  • Well to be clear, and I don’t think a lot of people are aware of this yet, CMS has changed the HIPAA rules to allow so-called “interoperability” between providers. No longer does a provider have to get your written permission to share your records with another provider. In fact, your EHR is now populated with the record of all doctor visits you attend automatically. There is no such thing as privacy anymore. Want to get a second opinion without telling your current doctor? Not anymore. Additionally, because all this data flows through CMS, the federal government is now keeping a detailed record of all doctor visits of every American citizen. Think on that for a second. How did I find this out? Not here on MIA. Here are some relevant links:

    Why Patient Privacy Rules Should Not Be Eroded:

    A Dissapointing EHR:

    CMS Finalizes Changes to EHR Interoperability Rules:

    This is medical fascism, yes. The answer is to boycott medicine for anything that isn’t urgent like a broken bone or heart attack, or chronic that requires actual medicine like insulin. You no longer own your health or the services you receive.

  • ILNC, thanks for finally addressing the question. (Though you didn’t really.)

    You did actually endorse the research methods and used your unnamed organization as another org that uses transparent methods. We guess (?) since we have no way or proving or disproving these statements.

    I find it odd when someone speaks about their experience with an organization and then when asked which organization they’re speaking about, gets huffy and announces they’re leaving the conversation.

  • Afterthought: thought I should add that I don’t actually want a weapon. I abhor guns. But I am left feeling like the systems which aim to help us end up doing harm a lot of the time by penalizing victims worse than those who traumatized them . And this transcends psychiatric practice to many other areas of society when it concerns notions of help.

  • Annie, I’m totally with you saying screw the JHU Mood Disorders clinic. I am definitely not singing their praises, more like shocked how hard a doctor will try to keep her patient from hearing a second opinion. The revenue stream is a powerful motivator. I certainly don’t believe it was out of concern for me. (Though I think she was otherwise a nice person.)

    But I’m absolutely with you that emotional distress has a cause. Being fearful of someone who puts a gun to your head in front of your child and having your attempts to get away from that violence labeled as an extreme state/response is what hurt me the most. The fact that my ex husband can still buy a gun but I can’t just boggles my mind.

    It’s totally true that trauma (and an inherently traumatizing culture) is the number one source of emotional distress and we need fundamental changes to our cultural response to those in distress. What good is help when the helpers harm?

  • Hi Annie, I have to tag onto this because my own doctor who specialized in Dissociative disorders had herself graduated from Johns Hopkins medical school. She was very clear in her instructions to be cautious about seeking treatment from Hopkins hospital because they wouldn’t believe I had DID and they’d change my treatments. She told me the director of psychiatry (Paul McHugh) had been her advisor and he didn’t believe in DID. The two primary diagnoses she treated me for were DID (which she later changed to DDNOS) and Bipolar 2, because I experienced hypomania in response to SSRI antidepressants. (Although she threw almost all the codes in the whole damn DSM at me at one point or another over the years trying to make something stick.) it’s pretty comical when patients are placed on a stimulant and an antipsychotic at the same time. Do they think too much or not enough? 😀

    So when my relationship with her started to deteriorate when I still wasn’t any better (or in practical terms more stable) after ten years of treatment, I did eventually get seen by Johns Hopkins Mood Disorders Clinic, and lo and behold, they didn’t just say I didn’t have DID, they removed the bipolar diagnosis too, saying that I had major depressive disorder clearly caused by complicated and prolonged grief over the loss of my children. I have the treatment and discharge summary with axis 1-5 diagnoses for proof.

    Sadly it took another two and a half years of bipolar treatment before I was willing to ditch my own belief that I was seriously mentally ill.

    When people ask me what it’s like to be off meds, I say “I can think again”. And what a precious gift that is. Of course, one of those thoughts is: if someone tells you to do or not to do something, consider if they’re reaping a financial benefit from keeping you in the position you’re in.

  • Richard, I appreciate your input here and also your reference to what, as you put it, amounts to a caste system. The system we have in place punishes sick people (disabled) by placing their inherent value as humans solely in the basket of whether or not they can be financially productive for those who we have been culturally conditioned to believe are the deserving. And if they can’t, more than likely SSDI will trap them in a cycle of poverty. The fact is that three people in the US hold more wealth the the bottom 63 million households (comprising 180 million Americans). One fifth of housebolds have no (or negative) net worth. Half of households could not afford a $1000 emergency. Most are job insecure – even professionals like my husband who used to enjoy the greatest job security, spent years after a large corporate takeover of his prior company (which he loved) fearing he would lose his job any day. When asked during a company wide town hall meeting if the jobs of the professional staff were secure, the CEO of the company stated coldly “nobody’s jobs are secure”. This is the reality of the world we live in where even people in professional positions that used to enjoy security in their careers are always under threat of being replaced with a much cheaper recent college graduate.

    What we’ve really done is decided that it’s appropriate for three ultra rich people to decide public monetary policy. They get to create and fund massive programs of their choosing in the name of charity while the fruits of Americans labor is secreted away into their private coffers in the name of capitalistic pursuit and “market forces”. This isn’t even close to democratic.

    Thankfully, I think we’re finally reaching a point where the impoverished majority are demanding change. So the issues aren’t just about the poor. Even people in well off households are feeling their net worth slipping year after year as those at the top take an ever larger portion of the profits. No matter what anyone thinks of the poor, you can’t tell your professional class to eat cake as these are the people who did everything right – did well in school, developed a career, made millions for their companies, and being told they can’t have a raise this year being the CEO needs 250 million in base pay plus stock options (deferred pay) and a 50 million bonus.

  • Yes it’s ridiculous to think that you can force someone to meditate.

    But I think also that I was getting at a greater point. There are other types of meditation that include the concept and teaching of mindfulness but the way they have become manualized for industrial application has removed the ritual and spiritual practice that I have felt is so closely intertwined with the results of mindfulness that Linehan drew from when she was designing DBT. And this is what I feel is so objectionable about the way it’s been bastardized for the mental health community.

    I have gone to many an Insight Meditation Meetup in my community and it is delivered in the same way that I experienced in clinical setting, though in theory, mindfulness is a critical component of insight meditation practice. So you’ll have an instructor at the front of the room speaking to a bunch of people in business wear who’d rushed to drive their from their important jobs, all sitting up in their chairs and paying attention, the glare of fluorescent lights overhead, some generic speaking from the leader, a guided meditation, and then you all pack up and go home. I went every week during the summer of 2016, never got the sense that there was a community of us with the kind of rapid turnover you might expect from a meetup group, and never feeling like I’d gotten any benefit from it.

    And I really did not get any benefit from it until I joined a zen Buddhist intro to meditation taught by someone who’d spent many years practicing with Thich Nhat Han himself at Plum Village in France. That was when I finally learned how to meditate for real and what it actually meant to simple observe thoughts without reacting to them emotionally. It was the very definition of a safe space. There really is no comparison between the way Buddhist monks and initiates meditate and these westernized versions.

    And it’s just my experience but I really feel that the focus on mindfulness alone is insufficient without genuine spiritual practice. It would be like going to Sunday school but skipping worship service and suggesting that people would reap the benefits of Christian spiritual practice out of that.

    It is the spiritual interconnectedness that Buddhist meditation practice develops in the practitioner that eventually produces the result of calming the mind and which the practitioner is then able to apply their newfound awareness to every day activities. The concept of ritual, whether you are washing the dishes, walking the dog, doing your taxes or dealing with a stressful situation, it is the ritual habits developed that contribute to the practitioners ability to relax and open the mind and practice mindfullness in everyday activities. Without this ritual, it is a tool. And I still believe that when you wield this as a tool (coping skill) instead of it being a personal practice of meditation with all of its rituals, that you’re unlikely to truly reap the long term benefits that the research on monks has shown to create in the brain, though you may certainly feel calmer immediately after a guided meditation and attempts to be more aware of one’s environment.

  • Omgosh, this touches my heart in so many ways, not the least of which because of the heavy queer presence in my family (my aunt will finally be marrying her princess bride at a Disney this year) and being raised in the queer community during the height of the HIV/AIDS crisis in the 80s and 90s. Thank you so much for sharing this. Don’t know how I haven’t seen it before.

  • I try to imagine a world where physical diseases are labeled and stigmatized the same way distressing emotional states and behaviors are. Wouldn’t it be the literal definition of crazy if you went to the doctor with a broken leg and were labeled with painful disconnected bone disorder and chastised for your refusal to stand on it?

    Though not everyone realizes it, physical diseases are named in ways that describe the disease process, usually using Latin or Greek root words. Diabetes Mellitis is a good example. It is so named because it makes the body’s fluids (blood and urine) sweet.

    Schitzophrenia is an incredibly outdated term that bears no relation to the person’s distress. In fact, it’s Greek origins ‘schizo’ means “split” and ‘phrene’ means “mind”. This could more accurately be the name of MPD/DID. It doesn’t reflect the many different causes of disconnection from reality.

    Additionally, there is little evidence of a unique disease process. The medical research community does not consider it a single disease process or even a disease process at all, but rather a cluster of disorders (at least 8), perhaps more. There’s no evidence base for current long term psychiatric (meaning medication) treatment for this non-disease, regardless of whether the patient has fresh fruit in his pockets or thinks he’s Jesus.

    The harsh western medicalized treatment of the many presentations of distress labeled as schizophrenia is a miscarriage of justice and a malpractice of medicine. And it’s truly hard to believe there are providers out there still ruining people’s lives by labeling them with what is culturally thought to be practically a death sentence for the mind.

    I am with the others saying to drop the labels altogether. Medicine is doing more harm than good with these labels and treatments, disabling people for life and calling it “treated”. It’s truly shameful and shocking that this is still going on all around the country and indeed around the world. The only way this makes sense is because of the massive profits being raked in by the pharma-mental-treatment industry that is largely being funded by taxpayers, through the fraud of Medicare/Medicaid payments, which constitutes an organized effort between the American Psychiatric Association, Pharma, and multiple us government agencies.

    There is currently a RICO (organized racketeering) lawsuit that was just allowed to move forward in Texas on behalf of Lyme disease patients against the IDSA and multiple insurers, and this may be a strategy that survivors of psychiatric harm consider using considering the known coordination between industries in the psychiatric field. Dollars for Docs anyone?

    Food for thought for those questioning the labels and treatments.

  • You have a compelling story, especially the part when you talk about having a “dynamic spiritual and emotional sensitivity to the world”. It reminded me of the song lyrics by Jewel that I keep so close in my own heart. She sang “I’m sensitive and I want to stay that way.” It also reminds me of some of Laura Delano’s writings about learning how to really feel all those deep feelings and that having deep feelings doesn’t mean you’re emotionally or psychologically broken. Perhaps just the opposite.

  • Richard, I have heard this suggestion from you and others before, and I appreciate the vote of confidence that my story is worth sharing.

    To be blunt, I don’t share Mad In America’s vision to “rethink psychiatry”. Many of my stories are written in response to feeling like I need to push back against some narratives that reappear over and over on this website. And while I appreciate very much RW’s books and work to document the history of psychiatry and the fact that the drugs and treatments it uses have shown long term harm with little benefit, my story is much larger than just being another nameless/faceless a victim of a rogue medical practice (psychiatry) that overwhelmingly harms patients. I don’t support reforming this industry in any way. I don’t support alternatives to psychiatry because that assumes that the ways in which we suffer are part of the natural order of things rather than the intended result of systemic factors that reward some while punishing others.

    My story is one of survival in the face of overwhelming odds. This is what complex trauma looks like. This is what a high Ace score looks like. This is what the unintended consequences of political decisions like welfare reform looks like. This is what the harm of interventions looks like, when the helpers unintentionally mistake helping a child with helping a family cover up abuse by targeting that child for endless amounts of “help”. It’s a story of what happens when we treat human beings as if they’re disposable. And it’s a story of dogged determination and a refusal to sit down and shut up.

    But beyond that, what’s happened to me is not just a failing of psychiatry, it’s a failing of the social and moral fabric of this country. And sadly, there are millions of people like me, in psychiatric institutions, in prisons, and under bridges. My story is reflected in every begger on the street that’s given a sandwich instead of money because you know they’re just going to use it for alcohol and drugs. It’s a story of homelessness prevention measures and suicide prevention measures and and domestic violence prevention measures, and many other systematized ways we control people in the name of helping them. So to give one person fifteen minutes of fame, parading misery for public view, while, in my view, making few if any substantive efforts to eliminate the causes of that harm is not something I want to participate in as that seems like the essence of tokenism to me.

    That being said, if any serious journalists reading this want to help me write a book about my experiences and get the message out on a wide scale about how harmful our western notions of “help” are and the kinds of help this survivor would like to see implemented, feel free to contact me.

  • Indeed, Alex, I have appreciated you sharing your story and your support and singing that canary song right alongside me. I don’t know what age demo you’re in, but do you recall the Food Aid benefit held back in the 80s, with the video of the children singing We Are The World? That’s what I envision by telling my story. I hope that others find the courage to tell theirs, whether officially sanctioned by a particular publication or in the peanut gallery. To borrow a quote from the Bernie Sanders campaign: it’s not about me, it’s about us. Not me. Us.

  • Mindfulness as taught in the mental health industry is NOT the mindfulness taught to beginning meditation students. This is a concept that’s been appropriated from the Buddhist community and bastardized into a system of shaming people for thinking too much about distressing things. In the psych community, mindfulness is taught with handouts, guided meditations, and is reduced down to the fragmented parts that psych researchers have decided are the most useful at stopping “rumination”.

    In a (Zen buddhist) meditation group, the atmosphere is so much different. The lights are dimmed, you take your shoes off and sit on the floor in a circle on a Zafu/zabuton, there are all sorts of rituals that you as the participant go through in an interactive way with the leader from the opening with the Tibetan singing bowl all the way to the close with the same. There’s a quiet respect. You learn to listen with an open heart when someone is speaking and you thank them for sharing. Every moment is an opportunity to relax and calm your entire mind and body. There’s a walking meditation component (my favorite part, especially being taught to match our breath to our walking rhythm and slow down our breathing), there’s the sharing afterward if any strong feelings arise. When participants cried while telling what feelings or memories they had experienced, it was treated as a sacred moment, touching some inner part of your psyche, not as a failure to properly clear your mind.

    In the community, meditating is treated as a way to get in touch with your environment and be interconnected with everything around you. In treatment, mindfulness is just another tool in the bag to shut people up and fix their unquiet minds. One is a way of life and the other is a means to an end treated as a tool. But we use tools to manipulate and force our environments into the shapes we want and that’s not how meditation works.

    I have been exposed to an extensive amount of mindfulness training in both treatment setting and in the community and there just is really no comparison. It’s truly a tragedy how mindfulness (without the spiritual and ritualistic components of zen Buddhist meditation) is taught to many patients with the goal being to feel better but not to become spiritually wiser and become connected with the universe and all of the living beings sharing this walk with you. Mindfulness as psych treatment is another bankrupt quick fix.

    I can only at this point but thank the gods I do think so much. A willingness to look at something over and over and over from every possible angle until you know it inside and out, that’s not ruminating, that’s a hallmark of the mind of a scientist, not a sick person.

  • I feel the need to point out an elephant in the room here as well.

    SSI has become the new child welfare. If you’re too poor to care for your kids, and astute enough to know how to game the system, having them drugged and declared mentally ill guarantees a monthly income for that child in SSI payments. This is a much wider spread practice than is truly appreciated and while you might be tempted to blame the impoverished parent for essentially committing fraud, our social safety nets have eroded to the point that a parent who struggles with employment for whatever reasons is at risk of losing their children.

    There really has to be a better way to support children and families and provide an education to kids that doesn’t result in creating lifelong mental patients.

    One answer might be to stop funding foreign wars and route that money back to American interest like funding exceptional schools. The most necessary first step is to reduce school class sizes to numbers one teacher can reasonably hope to manage without resorting to chemical and/or legal force. Another idea would be to fund arts and music, physical education, and daily recess.

  • Alex, it may be that my purpose ultimately is to keep singing the canary’s song and hoping the warnings are heard.

    Janis Joplin’s Me and My Bobby McGee, stated that freedom is just another word for nothing left to lose. There is nothing anyone can do to me at this point that would be worse than my heartache at how my children have paid for my traumas and medical mismanagement.

    When my older daughter said she doesn’t care that I was so young or what I was dealing with, she was my responsibility and she feels I abandoned her, she is right. When my younger daughter said she was scared to become a mother because she was afraid she might lose her own children the way I lost mine, that cut to the deepest parts of my heart.

    The system can’t hurt me any worse than taking the fruit of my womb. I will keep singing the song of a survivor and warning my people we can survive and change this deeply damaged system. Never forget the power of telling your story even when it makes those listening squirm in their seats!!

  • Steve, I believed in the chemical imbalance because I was taught that in “medication education” groups I was forced to attend in both inpatient and partial outpatient hospitalization programs. I was taught which of my medications were for which diagnoses, and that they “worked” by keeping my neurotransmitters in balance. I was also exposed to ridiculous fearmongering about the dire consequences that would happen if I went off my meds that treat my brain disease. It wasn’t just one doctor urging me to take my meds, it was literally codified into the treatment I was given with classes taught by social workers, all with little pharma branded gifts like brain shaped squeeze balls and pill boxes labeled with the names of brand name psychiatric medications.

    My experience has been that I have had to do all of the leg work to get my physical health needs met. It took me six years to get my CPAP machine for my sleep apnea. Instead of spending three years on ambien, I spent nine. I was first referred to for sleep testing in 2005, and was found to have moderate apnea. I then failed the titration test because they only had one kind of mask in the sleep center available to patients for titration studies. So despite being diagnosed with moderate apnea, with startling drops in oxygen levels during apneic episodes, I was woken in the middle of the night by the sleep center staff, told to go home because they couldn’t help me (I was taking the mask off in my sleep. To this day, I can’t use a full face mask, it feels like something is eating my face!)

    It took a lot of persistence ( two years worth) to get another referral to a different sleep clinic at another hospital, but that sleep study found my apnea was mild and Medicare wouldn’t cover treatment for it.

    Eventually, my psychotherapist, who has sleep apnea himself, sent me to a specific doctor at yet a third hospital’s sleep clinic. I got my sleep study, passed the titration study (they had a plethora of masks to choose from) and I haven’t taken an Ambien, well, in a couple of weeks it will be eight years of compliant nightly use, and eight years off ambien.

    Funny thing, I was still morbidly obese from the drugs when I first started cpap therapy, but after losing all the weight and still having apnea, my doctor admitted that I will always have apnea because I have a child sized throat and mouth as a result of a congenital defect shared by at least one of my sisters that we inherited from my father who also had sleep apnea and used a machine.

    People have this idea that sleep apnea is an issue that only effects overweight people which is why I was not referred for a sleep study until I met the accepted risk factors for apnea which include obesity. I was not obese (not even seriously overweight) before I was subjected to psychiatric medications.

    My point overall though is that at every step of the way, I have had to do the necessary work to get my physical ailments treated properly because doctors are so ready to dismiss patient complaints as psychosomatic and prescribe drugs that are both harmful and inappropriate treatment for the patients actual medical issues. For example, ambien is contraindicated in sleep apnea patients because it suppressed the CNS, which you really really need to be functioning properly if you stop breathing in your sleep!!

  • This country still peddles in the child trafficking system known as infant adoption. The affluent tend to wait to have children until they are old enough to experience more fertility issues and then purchase children from the poor. The antiabortion and antiwelfare lobbies in the US serves to continue this practice. Those who don’t want to deal with the potential for birthmother issues purchase their children from abroad.

    The military is waiting to put down any uprising notions the poor may develop. We all saw what happened to occupy.

  • This is from today’s news in Maryland:

    Interestingly, suicide is the number one cause of death for Lyme disease, Lyme disease is endemic in Maryland, and children are at unique risk because of the greater time they spend outdoors.

    I cannot imagine placing my depressed child on a psychiatric medication under the guise that it would *reduce* their odds of suicide. I’m deeply saddened for the children who will become the victims of this suicide reduction initiative.

  • Oh and Julie, as for nurses…

    I was in the emergency room a few years ago when a nurse came to take my blood pressure. The reading was 55/40. Her response? She told me to get up and walk around because she’d get fired if she wrote that down in my chart and didn’t call a code blue. And she said it all with a chuckle.

    I was a known cardiac patient with known syncope due to precipitous drops in blood pressure (which incidentally, I now know was neurally mediated due to the damage the Lyme was doing to my autonomic nervous system). She’s damn lucky I didn’t pass out and injure myself when I stood up to accommodate her demand that I raise my blood pressure.

    I felt like such an inconvenience to her. So no, I absolutely do not let nursing staff off the hook.

  • I think the general public just isn’t really aware of how many doctors leave the field every year and how severe burnout has become in the medical profession. A 2014 survey showed that 4 out of 10 doctors surveyed said they planned to leave medicine within the next year, either because of retirement or a career change. A full fifth of “doctors” treating patients now are not doctors at all, they’re physician assistants and nurse practitioners. They get paid less than doctors, often with similar levels of student debt, and take the same shit that is causing doctors to ditch medicine.

    As Alex pointed out, it takes a certain level of empathy and compassion to look beyond your own circumstances so that you can begin to attempt to heal a broken system. We must be willing to analyze all the different factors causing the deterioration in patient care and not just blame each other. I want to remember that doctors are people too. And so while patients are rightly angry with the piss poor treatment we often receive, especially when we have a psychiatric label attached to our records. We must as patients be willing to see what is driving some (many?) doctors to such despotic behavior.

  • Dr K, I just wish you would see beyond your own myopic view of America. There are genuinely bad actors, as well as parents who recognize that the amount of homework kids are taking home these days is harmful.

    But not all of us ended up psychiatrized because we sought out help for emotional distress or tried to get our kids a better deal in a bad school system. I went to a physician in my community with serious medical issues and was labeled with fibromyalgia, which in 2001, was very much treated as a somatoform disorder. I was destabilized by psychiatric medications. I was in an extremely abusive relationship with an alcoholic man nearly twice my age with little other options. I had a truncated education, having dropped out in 8th grade due to traumatic family issues that were in no way reflective of me as a person, but in reality having attended only short periods of school for the prior three years, I had closer to a fifth grade education when I entered psychiatric care. Google was not around in those days with the answer to life, the universe, and everything literally at your fingertips.

    So it’s very difficult for me, whom like Alex, thought I was being a good compliant patient and DIING THE RIGHT THING while my life disintegrated around me. I was told it was because I had a severe mental illness. I was made mentally ill by psychiatric drugs. I lost my child. I was instructed to go onto disability. I was so severely ill, physically and by extension of the effects of the pile of drugs I was given, “mentally ill”, that I was not even capable of applying for SSDI on my own.

    I did not begin to restore my ability to think critically until I had been off the drugs for over a year. And despite realizing that I was not in fact mentally ill, I was becoming more and more physically ill while being dismissed as “that’s just your fibromyalgia”.

    It took going off of disability (which they won’t actually let me off of but they agreed to suspend my payments) and getting married to my husband in order to get good private insurance (because Medicare saves money by paying doctors a pittance, making them not care about their low income patients) so that I could get a doctor to care enough to look deeper.

    This past November, with serious chest pain (now documented as Lyme carditis) and a swollen large joint (the fifth such instance) I went to a new doctor, armed with my fancy Cadillac insurance plan. You should have seen her fawning over my husband and I, saying that we had such excellent insurance and she really hoped we would decide to continue to see her. But I’ll give her credit, she ran the most comprehensive set of tests that has ever been run on me and she found my Lyme disease – an off-the-charts CDC positive test with severe clinical symptoms. Considering how ill I’d become, it’s truly astounding that the symptoms I’d had for a number of years that were absolutely hallmark symptoms of Lyme were summarily dismissed and ignored until a doctor had a financial incentive to find the true source of my illness.

    So I hope you will understand why, when I’d lived so many years in poverty on a government allowance, while my body continued to deteriorate despite my following doctors orders to the letter, why I would be so upset to see you as a doctor target Americans as just wanting a quick fix via medication or accommodation. Though I do not doubt that a subset of people go to doctors in attempts to fix problems a la carte (for themselves or their children) rather than working toward changing a system that harms other people (and their kids) just as much.

    Some other issues I think you did a bad job on were your declarations of the abundance in America as if we all have equal access to that abundance. It’s true that America is a land of abundance. It’s also true that shelters and food banks and a host of other (largely inadequate) assistance programs exist because many people are left behind in this land of abundance.

    In America, 30-40% of fresh food is either left in the field to rot because of price downturns making it more expensive to pick than to waste (and federally funded crop insurance will pay the farmer regardless), or it is thrown away by grocers who deliberately spoil the food with chemicals rather than donate to food banks. And that’s not to mention the millions of people who live in what’s called “food deserts” like I did living in an inner city for a number of years.

    In America, we have a housing/homelessness problem, while there are way more empty homes than people who need housing.

    We do not distribute goods in a way that meets human need but instead in ways that reward those whom we consider deserving.

    Children are funneled into psychiatric care because teachers have class sizes so large that keeping order becomes priority number 1 instead of educating.

    I have lived at every position along the socioeconomic spectrum, being born into a well off family that lost its economic progress, living hand to mouth for many years, indeed to finding that, pardon my crudeness, fucking my way out of poverty was going to be the only way my needs were actually met.

    I am, in fact, quite bored at home. I would, in fact, love to have some purpose other than being one of “the eaters” as the nazis referred to the disabled, and as much of America still thinks of those who aren’t financially “productive”. I have, in fact, demonstrated a willingness to take my health into my own hands. I take no medications. When I was told my cholesterol was high, I adopted a plant based diet and reversed my numbers. I avoid unhealthy processed foods. I exercise as much as this bag of bones will allow. I maintain a healthy weight, having shed the pounds psychiatric medications put on. I take supplements and keep abreast of health news, all in an effort to maintain what little health I have left that the medical system did not destroy.

    And you know what I’ve gotten for my nonstop efforts to improve my health so that I might be able to contribute in positive ways in the world? An absolute refusal from the social security administration to allow me to go off benefits, and a letter from Medicare stating that i will be penalized financially for not accepting Medicare Part B when I have superior insurance coverage and don’t want Medicare or social security, and in fact found these systems so underfunded that they serve to keep disabled people in poverty and sick rather than acting as the intended social safety nets they purport to be. Yes, in fact, I am being forced by threat of monetary fines for not laying down and accepting my fate as a severely mentally ill patient.

    Oh, and despite the very well known and documented effects of untreated Lyme disease, it is not in the blue book of eligible diseases one can get disability for. I’m literally being punished for demanding proper medical care, which I cannot get using the system that’s currently in place. I had to find a way out of the system. I am very close to simply leaving the country because the way this country practices “help” is the utmost form of harm.

    You have no right to tarnish Americans the way you have simply because you’ve run into some patients who would use their privilege to flout the rules. That’s what I find shameful about your article.

    Many many people like me exist and making generalizations that apply mostly to those leading privileged lives and extrapolating it to all of America, well Dr K, you’re part of the problem when you do so. So again, please check your privilege at the door and realize that blaming your patients, even the ones trying to get a lesser homework load for their overworked children, blames the wrong target. Like Alex, I feel that this article was harmful. I’m not insulted or offended, I’m astounded.