Recently, I had the opportunity to share my experiences as a former psychiatric patient with author Gary Null, PhD, for his upcoming documentary about psychiatry. During our conversation, I brought up the concerning fact that many leaders of the pro-psychiatry movement successfully launched by the National Alliance on Mental Illness (NAMI) and other organizations have never been mental healthcare consumers themselves. I believe that advocates who have not experienced psychiatric treatment lack the ability to fully comprehend the suffering many consumers endure from adverse drug reactions.
This is, I think, a moral imperative. The use of all pharmaceutical products really is a “buyer-beware” situation—and since many psych patients become forced consumers, their advocates have a duty to be educated and concerned with adverse reactions.
During my time as a psychiatric consumer, I both experienced and witnessed much wrongdoing within the system. Among the most grievous was the liberal prescribing of psychiatric medications without consideration or warning of their known risks. Back in the late 1990s, under forced treatment for psychotic episodes labeled bipolar disorder, I had no choice but to accept drugs that I knew were causing me harm—including Parkinson-like symptoms and tardive dyskinesia that rendered me unable to care for myself. I soon realized that in order to find drug-free solutions for my health conditions, I needed to educate myself.
Once I learned more about possible medical issues that can underlie “mental illness” and alternative therapies to address them, I was able to get the correct diagnosis behind my symptoms: toxic encephalopathy from workplace chemicals. Only after I incorporated evidence-based treatments and various complementary therapies into my regimen did I begin to recover. I also developed skills to successfully advocate for myself and became passionate about promoting positive system change on behalf of others. (I shared the details of my story in a blog for Mad in America last year.)
As an advocate for family members, I have seen how easy it is for prescribers to overlook their patients’ harmful, drug-induced side effects. These adverse reactions were either ignored or diagnosed as symptoms of a separate illness and treated with additional drugs. That is what happened to my late brother Lenny, whose nightmare of misdiagnosis and overdrugging, then proper care and temporary recovery I also shared here. I recognized the suffering he was enduring when his doctors continued to promote the drugs he was on as safe and effective. If not for my and my family’s persistence in advocating for him, the prescribers would not have acknowledged his drug-induced conditions.
Questioning the “facts” of the pro-psychiatry mindset
Mind you, like the rest of the pro-psychiatry movement, I used to be one who put all of my trust and faith into medical professionals and the “medicine” they prescribe to treat perceived psychiatric disorders. My initial exposure to it came in the fall of 1999, when I attended my first NAMI conference in Syracuse, New York. With Pulitzer Prize-winner William Styron giving the keynote address, the event attracted over 500 NAMI members and many mental health professionals who served as guest speakers. I was very excited to connect with members of NAMI and I wanted to learn everything I could about what seemed like a very strong and influential not-for-profit advocacy organization.
After I listened to the conference presenters, observed the audience’s responses, read NAMI-created materials, and spoke with NAMI members, it became obvious that they conceptualized “mental illness” in a very limited way. Much like programming a robot, NAMI presented us with pro-psychiatry “facts” that seemed designed to be memorized and repeated. While based on a foundation of family-to-family support, the organization seemed to be leading the cause of keeping all mental health consumers on psychiatric drugs at all times and at all costs because they believe the drugs are life-saving…and that there are no other effective treatment options. They seemed to form their beliefs based on anecdotal evidence that medications work for some, and therefore should work for everyone—all the while turning a blind eye to the harmful side effects their loved ones experienced.
My experience at the NAMI conference led me to the conclusion that the group was an ally of the pharmaceutical industry. A later U.S. Senate investigation confirmed my suspicion, revealing that in two years alone (2006-2008), the pharmaceutical industry had contributed over $23 million to NAMI. After a newspaper expose, NAMI’s then-leader even acknowledged that the group received some 75% of its funding from drug companies.
This same movement, which has helped bio-psychiatry to flourish, fuels a dangerous agenda in strong support of forced, possibly lifelong treatment. This agenda deprives consumers of best-practice standards that emphasize individualized care and consider the underlying causes of psychiatric disorders.
A loved one’s medication-induced nightmare
Based on my extensive research during and after my family’s experience with psychiatry, I believe that individualized, holistic treatment provides the most realistic opportunity for mental health consumers to live a healthy life. The recent struggles of another family member whose medication-induced symptoms were misdiagnosed as a psychiatric disorder has only reinforced this belief— and convinced me of the importance of becoming educated on the many adverse reactions prescription drugs can cause.
Let’s start with the fact that the warning labels on pharmaceutical products should be taken very seriously. Like many other psychiatric consumers, I learned the hard way that adverse reactions really can happen and when they do, prescribers don’t know how to help. A loved one I’ll call Max is currently on disability due to an adverse drug reaction that can best be described as medication-induced torture. Last fall, shortly after being prescribed a fluoroquinolone antibiotic for a cold, they suffered acute toxic neuropathy. Peripheral neuropathy, a very painful condition that affects the nerves outside the brain and spinal cord, is a known adverse reaction to that type of antibiotic. In addition, neuropathy was listed as a possible adverse reaction on several other medications they were being prescribed, which included two types of blood pressure medications, a gout medication, three different nasal sprays, and an over-the-counter allergy medication. As confirmed by a pharmacist, polypharmacy greatly increased the chances Max would suffer this “side effect.”
While it was obvious to me that the cocktail of drugs Max was prescribed quickly induced a very severe and possibly life-threatening condition, it took a lot of advocating on my part to convince medical providers this was the case. From the onset of their symptoms, I started keeping a journal, photographing their adverse reactions, and filling a binder with all of their medical records. I’m so glad I did, because one night, after starting a new medication to treat what one specialist considered to be restless leg syndrome, they woke up screaming in pain. It started with a sudden sharp pain in their right shoulder; within a few hours they could not raise their right arm, had edema (swelling) in their right hand, and the right side of their face had a noticeable droop.
Based on my past experience and research, I was convinced they were in a crisis situation and experiencing additional toxic reactions. We went to the ER for help, but they simply diagnosed Max with unrelated pain from arthritis and were planning to discharge them. At the very least, I thought, the doctors should give them an IV to help flush out the toxins, but the hospital would not provide that treatment for someone who they believed was dealing with arthritis.
Before they let Max go, I literally begged an emergency room doctor to have the hospital pharmacist evaluate the medications Max had taken over the past month. The doctor agreed to having just the current medications evaluated and soon returned to tell us that he was surprised to learn that one of the blood pressure medications Max was on could cause permanent peripheral neuropathy! He agreed to administer an IV, and it did help relieve some of the distress my family member was experiencing. This was the fifth time Max had been to the emergency room seeking help for medication-induced toxic reactions that continued to be misdiagnosed. It took a hospital pharmacist to confirm what I was suggesting all along.
After a total of nine trips to the emergency room, enough was enough. In addition to the anticonvulsant medication prescribed to treat neuropathy, the only help doctors had to offer Max were psychiatric drugs for problems like insomnia and anxiety, which were being caused by the unbearable pain of toxic neuropathy. Rather than using more drugs to treat an obvious drug-induced condition, Max decided to go on disability to focus on getting off the offending drugs and healing their underlying health conditions. First, they tapered off of all of the medications with the known side effect of neuropathy, including the one for gout. By using the advice from Dr. David Perlmutter’s book Drop Acid and other alternative strategies, they were able to do so safely. For over a month now, their uric acid level and blood pressure have remained within normal ranges and they have not been back to the emergency room. We also researched supplements and treatments to help with their neuropathy symptoms. One such treatment has been BEMER therapy, which is helping my family member find some relief for a disabling condition that continues to flare up very easily.
And since I filed a formal complaint with the hospital, the mainstream doctors are now working to help Max in ways that may actually be useful. For example, it placed them in a coordinated care program where their caregivers can collaborate on the best treatment, and we have open access to hospital resources that will provide answers to all our questions. Max’s neurologist also provided a referral to specialists at the University of South Florida because, he admitted, this was the first time in his 30-year career that he had ever diagnosed a patient with medication-induced toxic neuropathy and was unfamiliar with appropriate treatments.
Going forward, Max continues to have muscle weakness, flare ups of neuropathy, chronic fatigue, and hypersensitivities to chemical exposure/food allergies. The lessons we’ve learned from this scary and frustrating episode are not new. First, that self-advocacy works: Mental health care consumers and their families need to speak up, making sure that providers have ruled out all possible underlying medical conditions before they make a psychiatric diagnosis and prescribe dangerous medications. Second, know your medication side effects! They can mimic the symptoms of other illnesses and/or be life-threatening. Read the package inserts on all prescriptions fully, and raise any concerns with doctors and pharmacists.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Ms. Mangicaro, I thought your article was very well presented.
I would like to learn more about your work.
I also wrote for MIA-2019 (“Full Moral Status”, Part 1 & 2) and Dr. Healy’s RxISK website-2018 (“A Unicorn: Changing a Medical Record”, Part 1-4) regarding my forcing [blackmailing=”It’s in EVERYBODY’S best interest…considering the unfortunate anaphylaxis (!)…”] a rare vacation of a “lifelong” bipolar diagnosis & “forever” SMI certification…without an attorney (on MY side)…and in writing; 2.5 years of a tortuous, medically-guided withdrawal (CMO/VP of the state MH contractor, as his only client) followed by ‘good luck, good bye, go away’.
The ACTUAL recovery and re-entry back into life was my own, personal science experiment that took 5 additional years. I could only find 1 other person who shared my path. They did not want contact-Understood.
Medical folks (outside of Psych) kept a nervous, BIG distance…. or pointed me back to my former assailants.
The aftermath left me with a subcortical focal lesion (brain damage) including 3 years of reported, documented seizures…among other ‘scars’. It’s been a long road of research & education regarding the industry, self-tailored support & applied recovery process-body & soul- but I’m there.
I was connected with some individuals by the late, great Paula Caplan, PhD (& MIA contributor among so many other accomplishments) to help navigate aspects of the psychiatric bureaucracy with tactics & strategies that could possibly help them towards effective self-advocacy, SAFETY & possible self-extraction.
I admire your hard work & advocacy for others. I would like to learn & contribute. Thank you.
Thank you for your compliments and for sharing your information. I remember reading your story on Dr. Healy’s site. I am glad that you put your story out there to help others.
My focus in advocacy has always been on conditions that can be considered “Severe Mental Illness” and in support of advancing Orthomolecular/Functional Medicine approaches that involve testing for possible underlying medical conditions that can be misdiagnosed. Although, the DSM was created in a way to accommodate spin doctoring and also includes medical conditions, so it’s always a win for psychiatry.
As much harm as I have seen/experienced/know about, I still try to maintain a balanced approach as I have also met many people who claim psychiatry/psych meds/forced treatment and even ECT “saved” their life or the life of one of their loved ones. I try to consider all perspectives and experiences equally and without prejudice.
For whatever reason, ”One man’s medicine is another man’s poison.” It’s just very unfortunate that the poisoned people don’t have as strong of a voice as those who found benefit.
In the past I have had many conversations with individuals involved in the pro-psychiatry movement, the anti-psychiatry movement as well as those who fall somewhere in-between.
The one issue that everyone seems to easily acknowledge is the fact there are many underlying conditions, some even life-threatening, that can be misdiagnosed as a “Serious Mental Illness”.
I feel individuals who experience altered states such as psychosis/mania are those most likely to end up in coercive psychiatric treatment and therefore in need of advocates who will look out for their best interests.
I believe those who are advocating for the treatment of others, should advance the same treatment that they would want for themselves.
If I suddenly experienced psychosis/mania/hallucinations, the treatment I would want is for my doctors to follow the guidelines published in the BMJ for best practice assessment of psychosis.
Below is a link to a website that I put together with the BMJ’s guidelines posted, along with articles I have collected over the years on possible underlying medical conditions/substances known to induce symptoms of psychosis/mania.
I believe the best way to start fixing our broken system is to find issues that a uniform advocacy agenda could be initiated/acted upon, and this seems like one.
If anyone wants a full story on a veteran destroyed by this, let me know. Medication abuse is rampant by the VA staff. I weaned myself off using psilocybin microdosing because I believe I had tardive *dysphoria*.
The editors at MIA are wonderful to work with. Please consider submitting a personal story. I have a relative who was employed for many years at a VA hospital and worked for a while in the psych unit. They also told me of the medication abuse. I also heard that from volunteering with Vietnam veterans and from a former VA psychiatrist.
Thank you for sharing,
We would love to hear your veteran’s testimony, I’m sure. Amy Biancolli is here to help.
I’m sure many here would like to hear your story, Bombria.
This is a very helpful story, unfortunately at your loved one’s and family’s expense. My intent is to share this with others ASAP, along with your other stories. Mad In America should be required reading.
Thank you so much for your compliment and for sharing.
As bad as this situation was, after looking into the side effects, it could have been even worse. The same medications can drug-induced vasculitis and at certain points they were breaking out in rashes and hives. I think that would have been even harder to deal with, so we are counting our blessings.
So far, our out-of-pocket expenses have been over $7000, and insurance has paid out over $40,000.
It’s unbelievable that pharmaceutical companies are allowed to manufacture such bad products and consumers have no way of even getting their money back for defective merchandise. I have two large Ziplock bags filled with prescriptions to dispose of.
“On April 30, 2022, communities across the country demonstrated their support for DEA’s annual National Prescription Drug Take Back Day by dropping off more than 720,000 pounds of unneeded medications at 5,144 collection sites. Since 2010, DEA, along with its law enforcement partners, has collected nearly 16 million pounds of unneeded prescription medications.”
Could you imagine if the drug stores had to give refunds on bad medications?
Just another marketing arm of the pharmaceutical companies….part of the drug cartel.
Amen. They are a Judas Goat, guiding trusting people to addiction & premature death…for a buck.
An unforgivable, disgraceful exercise in ‘grooming’.
Nami is was and will always be a cult.
Whenever I see the words “psychiatry” or “psychiatrist” the mental picture that comes to mind now is any clinician in a white coat who performs lobotomies on their patients or stuffs them in a straight jacket. People who are trained to deal with the mad and the clinically insane.
Instead of going through those great lengths to neutralize their patients psychiatrists prescribe synthetic chemicals that interfere with how the body works, including the brain, metabolism, and central nervous system, all under the illusion of appearing benign and well-spoken. The two things that remain are the forced hospitalization and the questions of whether you hear voices in your head or have thoughts of suicide.
But to end this ramble I really have to ask: How did we as a society ever give these people the keys to our minds? As a child in the foster care system I remember going to a psychologist, and I turned out okay for the most part. As soon as I entered puberty my aunt who became my adoptive guardian took me to see a psychiatrist who had me medicated at the age of 13 because I had difficulties adjusting to a new environment.
“How did we as a society ever give these people the keys to our minds?”
That is a great question that I think more people should think about.
I feel I gave the keys to my mind to a psychiatrist because I had no choice. I experienced an acute manic episode; I could not function, and I needed help. My mother insisted my altered state was caused by workplace chemical exposure. A psychiatrist told me I had bipolar disorder and I believed him. Turned out my mother was right.
When I asked myself why I refused to listen to my mother, who was very insistent, and instead choose to believe a stranger with a medical degree, it was because I thought he was smarter because he went to medical school.
I call it suffering from “Marcus Welby Syndrome: doctor knows best”.
Doctors are a trusted authority and it’s hard to break that trust.
For those who are too young for the reference:
“Marcus Welby, M.D. is an American medical drama television series that aired on ABC from September 23, 1969, to July 29, 1976. It starred Robert Young as the title character, a family practitioner with a kind bedside manner, who made house calls and was on a first-name basis with many of his patients”
“Father Knows Best is an American sitcom starring Robert Young, Jane Wyatt, Elinor Donahue, Billy Gray and Lauren Chapin. The series, which began on radio in 1949, aired as a television show for six seasons and 203 episodes. Created by Ed James, Father Knows Best follows the lives of the Andersons, a middle-class family living in the town of Springfield.”
“How did we as a society ever give these people the keys to our minds?”
This is the foundation of our culture.
In other parts of the world, people are living in extreme poverty and under authoritarian regimes, where they fear for their lives and are forced to conform strictly and enthusiastically and performatively. However, their minds *may* remain intact, and if fortunate, they may recognize the irony in their situation. I am not saying this is any better situation but to give another option existing out there in the real world.
Unfortunately, in our culture, we are sold the idea of freedom to do whatever we please, especially in the capitalist sense and making a profit which at the end makes us rich and first world regardless that we may still have poverty amongst us. Nevertheless, in exchange of the physical freedom, we relinquish control over our thoughts. Every form of media, whether it’s television, social media, or scientific papers, shapes our beliefs and dictates what we should think. If we take a moment to reflect, it’s evident. Orwell was not talking about the rest of the world, he was talking about us!
For example, we cannot brainwash other countries into changing their regimes without resorting to war or brute force, yet they can try to manipulate our opinions through media and psychological strategies. The power of psychiatry plays a significant role here. Even countries that are often considered our enemies have learned and applied psychiatric tactics on a global scale to try to upend our democracy.
This comment may seem catastrophizing and comparing mental health or mental illness to global issues but honestly until we see the damage from broader view, we will not be able to make sense of psychiatry influence and its insidious dismantling of culture and society. In short, it is even bigger than we think, IMHO.
Thank you for the excellent testimony. I posted it at my place of worship. I will send it to a local radio station. I also began to read your content-rich article from 2011 regarding toxic encephalopathy. That article alone is enough evidence to justify wide-ranging changes in the societal response to mental health challenges. Yet here we are in 2023 doing OUR due diligence to tell truth again, to be continued as long as necessary. Our family also has still more true stories to be written dating back to 2006 that need to be told. I want to push the stories beyond this wonderful venue to reach more minds.
Your comment warmed Max’s heart this morning (mine too).
He said, “That’s what is all about, if sharing a bad experience can help others, then it gives purpose to the suffering.”
Are you familiar with Susannah Cahalan’s story? I posted her article from 2009 below. She was very lucky to have a neurologist determine she was suffering from NMDAR encephalitis. The test he gave her was simply handing her a piece of paper and asking her to draw a clock. How sad it is to know that so many others did not get the same help as she did and are just “wasting away in a psych ward or nursing home”
A key factor in my own situation was past exposure to lead and chelation therapy helped to reduce the levels. Again, it is sickening to know how many people must be in psych wards/jails/prisons labeled “mentally ill” and could be helped if instead of experts just researching problems, they fixed them.
Thank you for taking the time to listen and share!
Lead Exposure Linked To Violent Crime and Delinquent Behavior
“Lead inhibits the bodies of growing children from absorbing iron, zinc and calcium, minerals essential to proper brain and nerve development. Lead also disrupts the normal release of dopamine, a powerful neuro chemical that controls an array of brain functions. Lead becomes lodged in bones and teeth, leaching into the bloodstream for years. Lead exposure causes physical changes in actual brain structure and can disrupt key brain
chemistry that controls inhibition, learning and impulsiveness.
Medical research has established a connection between early childhood lead exposure and future criminal activity, especially of a violent nature (Needleman et al. 1996; Needleman et al. 2002; Wright et al. 2008). Numerous studies link elevated bone or blood lead levels with aggression, destructive and delinquent behavior, attention deficit hyperactivity disorder and criminal behavior (Bellinger et al. 1994; Nevin 2000; Needleman et al. 2002; Needleman 2004; Braun et al. 2006; Wright et al. 2008). Broader research links lead exposure to antisocial and destructive behavior in humans and animals (Canfield et al. 2004; Froehlich et al. 2007; Surkan and Zhang 2007).
Even very low levels of lead exposure can cause significant neurologic damage to children and stunt normal brain growth. Such exposure is linked to cognitive and behavioral impairment which influences learning disabilities in children and violent behavior in teens. Low doses of lead can cause a broad range of functional problems such as loss of self-control, shortened attention span and a host of learning disorders
that often cause lead-exposed children to perform poorly in school and ultimately to drop out. (Lanphear et al. 2005; Wilson et al. 2006; Chen et al. 2007; Bellinger 2008a, 2008b).”
My mysterious lost month of madness
By Susannah Cahalan
October 4, 2009
“According to his studies, the median age for the disease is 20. The youngest is 21 months. About 75 percent of those affected by it are women. All show forms of psychotic behavior, some show signs of catatonia. About 80 percent of patients have seizures and 70 percent of patients see psychiatrists before any other doctors, according to Najjar….Najjar estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed….“It’s a death sentence when you’re still alive,” Najjar told me. “Many are wasting away in a psych ward or a nursing home.”…I was the first person in NYU Medical Center’s history to be diagnosed with NMDAR encephalitis…My father reflected on my time in the hospital. “Najjar told me she could have easily ended up in a nursing home for the rest of her life. Najjar thought she was extremely lucky. He was saying, with time, she could get back 90 percent of her cognitive abilities,” he wrote”
For the most part, NAMI is a support group for the families of “The Identified Patient”.
You seem to assume that the only “lived experience” that counts is the experience of those who have come off the drugs/medications. But what about the experience of those who are still taking them? Doesn’t that count? Even if that experience is coerced, it is still “lived experience”.
“This agenda deprives consumers of best-practice standards that emphasize individualized care and consider the underlying causes of psychiatric disorders.”
By definition, there are no known underlying causes of psychiatric disorders. If there is a medical condition, then by definition, it is not a psychiatric disorder. And “best practices” for severe psychiatric disorders are medication, possibly with therapy. I have never heard of a “best practice” that wasn’t medication. “Individualized care” means finding the medications that seem to help a person’s symptoms, that’s it. There is no other magical set of guidelines you can follow for, say, severe bipolar disorder. They simply don’t exist. It’s not like doctors simply don’t follow the guidelines. Anything other than medication is not supported by double-blind placebo controlled studies. The claims of alternative medical practitioners to know the causes of mental illness and to have working alternative therapies such as vitamins, minerals and diets are speculative and anecdotal. If such a breakthrough had actually happened, mainstream psychiatry would have caught on by now. There are even lists of complementary and alternative therapies that supposedly help, e.g. Omega 3, but none of them are considered strong enough to replace drugs.
Not that medications are so great. They leave many people as non-functional zombies. But sometimes it is a choice between being a zombie and being broke/homeless/dead. And hope that eventually you will find a med that gives you some quality of life, say 40% of what others have, instead of 5%. It’s not a good choice, but for many people it’s ALL THAT’S AVAILABLE.
Until some other set of therapies and guidelines come out that can actually be applied and result in some sort of safety for those with severe conditions, what else is there to do? Simply ignore the experiences of people who would be dead otherwise? Or people who were never given a choice about their drugging? Discount their lived experience because, for whatever reason, you are in the minority of people who have somehow managed to escape lifelong drugging? Not everyone’s experience works out like yours. All lived experience is valid.
I appreciate you sharing your experience, and I agree that lived experience should include everyone who has such experience, regardless of what that experience is.
I do wonder, however, where you get the idea that if alternative approaches were identified, they would have been identified by psychiatry and adopted. I just finished posting on the article about Martin Harrow, who was apparently castigated and attacked for publishing research that did not agree with the psychiatric mainstream position that all “schizophrenic” diagnosed people must be maintained on antipsychotics for the rest of their lives. Harrow was no radical, he was a mainstream researcher who simply reported his findings of a very well-designed study. They attacked him simply because he challenged the status quo belief system and threatened the hierarchy’s control of the narrative. It seems very likely that the very best evidence of any alternative approach would be attacked and buried, rather than identified and accepted. That’s my view of it anyway, and I think that’s what the evidence tells us. Mainstream psychiatry is not particularly interested in alternative viewpoints.
My goal was to write in a way that would hopefully not offend anyone and would welcome all to provide input.
I genuinely appreciate your comments and will try to respond accordingly in hopes of sharing perspectives and generating further discussion.
1. “But what about the experience of those who are still taking them? Doesn’t that count?”
Absolutely! Yes, in my opinion, the experiences of everyone labeled with psychiatric disorders and prescribed psych meds/ECT counts, ESPECIALLY those who are forced psychiatric consumers.
Forced psychiatric consumers should be considered a special class of disabled individuals as their human rights have already been severely compromised by the fact they are being legally forced to purchase/use psychiatric products and forced into contracting psychiatric/psychological services from providers and facilities. Any type of coercion allows one person to take advantage of another, so advocacy is greatly needed to protect the rights of those under coercive psychiatric treatment.
The experiences of family members loved ones, educators, law enforcement, care givers, providers and even strangers who encounter individuals labeled with psychiatric disorders also counts.
I respect the opinions of those who feel they, or a loved one, receive benefit from psych meds/ECT/forced psychiatric treatment.
I also respect the opinions of those who feel they, or a loved one was harmed from psych meds/ECT/forced psychiatric treatment.
I feel the pro-psychiatry movement is very powerful and receives a lot of support from parents and family members who have never been psychiatric consumers themselves and do not have firsthand experience with adverse drug reactions.
I believe organizations like NAMI have been heavily influenced by psychiatry and the pharmaceutical industry to focus on the belief that drug treatment works for everyone and push a drug-treatment agenda that leaves out the voices of those who have been harmed.
I believe a more balanced approach in advocacy is greatly needed.
Instead of pro-psychiatry, anti-psychiatry and everything in between, we just need to establish and advance a foundation based in best practices.
2. “By definition, there are no known underlying causes of psychiatric disorders. If there is a medical condition, then by definition, it is not a psychiatric disorder.”
I am not a mental health professional, but I have taken courses involving mental health issues, including a course in Abnormal Psychology that covered the Diagnostic and Statistical Manual of Mental Disorders (DSM) that was current at that time.
The DSM-5-TR lists almost 300 mental disorders that are nothing more than descriptive labels for a diverse array of moods, thoughts, behaviors, feelings, personalities, conditions, habits, circumstances, situations, beliefs, sleep patterns, mental status, etc. that can be perceived as abnormal and impact a person’s life.
The American Psychiatric Association (APA) has covered all of their bases and the DSM includes mental disorders that provide reasons why the mental disorder exists, including but not limited to:
– Alcohol-induced anxiety disorder
– Alcohol-induced bipolar and related disorder
– Alcohol-induced depressive disorder
– Alcohol-induced psychotic disorder
– Amphetamine (or other stimulant)-induced anxiety disorder, Without use disorder
– Amphetamine (or other stimulant)-induced obsessive-compulsive and related disorder
– Anxiety disorder due to another medical condition
– Bipolar and related disorder due to another medical condition
– Cannabis-induced psychotic disorder
– Cocaine-induced bipolar and related disorder
– Inhalant-induced psychotic disorder
– Other (or unknown) substance-induced bipolar and related disorder
– Other hallucinogen-induced bipolar and related disorder
– Personality change due to another medical condition
– Psychotic disorder due to another medical condition
– Substance/medication-induced bipolar and related disorder
The APA also includes side effects from medications as mental disorders, including but not limited to: Medication-induced acute akathisia, Medication-induced postural tremor, Medication-induced delirium, Other adverse effect of medication, Other medication-induced movement disorder.
Also listed as mental disorders are situations like: Food insecurity, Extreme poverty, Homelessness, Lack of adequate food or safe drinking water, Low income, Overweight or obesity, Problems related to other legal circumstances.
Refusing to accept psychiatric treatment is also considered a mental disorder with the diagnosis of Nonadherence to Medical Treatment.
3. “And “best practices” for severe psychiatric disorders are medication, possibly with therapy. I have never heard of a “best practice” that wasn’t medication. “Individualized care” means finding the medications that seem to help a person’s symptoms, that’s it. There is no other magical set of guidelines you can follow for, say, severe bipolar disorder.”
As acknowledged in the DSM, there are many underlying medical conditions and substances that can induce what is considered severe bipolar disorder. The problem is doctors fail to test for those conditions and commonly use the DSM with what they refer to as a “Chinese menu” approach. This unscientific, unethical method leaves patients rubber stamped with idiopathic disorders and treated with a one-size-fits-all, life-long medication management regime.
The British Medical Journal published guidelines for Best Practice Assessment of Psychosis, that is a start. I’ve also collected a lot of other case studies/information on underlying cause of psychosis/mania that can be labeled as schizophrenia/bipolar on this site:
4. “Not that medications are so great. They leave many people as non-functional zombies. But sometimes it is a choice between being a zombie and being broke/homeless/dead. And hope that eventually you will find a med that gives you some quality of life, say 40% of what others have, instead of 5%. It’s not a good choice, but for many people it’s ALL THAT’S AVAILABLE.”
Are you familiar with the 1999 case of Ryan Ehlis?
Ten days after Ryan Ehlis, a college student in Bismark, North Dakota, began taking Adderall to control his Attention Deficit Disorder and to help him with his college studies, he slipped into a psychotic fog, shot and killed his infant daughter, then shot himself in the stomach. He said God told him to do it.
The criminal court found Ehlis innocent after testimony by a psychiatrist and by Shire US, Inc., that the “psychotic state” was a very rare side effect of Adderall use. Various doctors testified Ehlis suffered from an “Amphetamine-Induced Psychotic Disorder”. (DSM-IV Code 292.11)
Medical experts and Shire US, Inc., the manufacturer of Adderall, commented that “despite the slaying, Adderall remains a safe and effective drug for controlling AD/HD.”
Because of taking an ADHD medication, a father killed his own child.
And the response from the drug company is, “DESPITE THE SLAYING” their product is still safe???
THIS IS UNACCEPTABLE!!!
In a later civil court case, the United States Court of Appeals, District Court of North Dakota, affirmed the lower court’s decision to dismiss a $100,000 lawsuit brought by Ehlis against Shire. Ehlis contended Shire knew Adderall could induce psychosis and failed to adequately warn of the associated risks and side effects. The court ruled the “learned intermediary doctrine” barred the claims of failure to warn. This doctrine provides that a pharmaceutical manufacturer has a duty to warn a physician of the risks involved with a drug, and the physician acts as a “learned intermediary” between the manufacturer and the patient. “Thus, a warning to the physician is deemed a warning to the patient; the manufacturer need not communicate directly with all ultimate users of the prescription drugs.”
The treating psychiatrist for Ehlis stated he (1) knew substance-induced psychosis was “within the DSM-IV,” meaning diagnostic criteria exist for this condition, regardless of the psychosis was caused by stimulant or other medication; (2) was aware some people can become psychotic without overdosing on certain medications, including Adderall; (3) knew the risks of psychosis was listed and identified in the package insert as a side effect for Adderall when he prescribed Adderall for Ehlis; (4) believed the statement in the insert was accurate; (5) continues to prescribe stimulant medications for adults since the incident involving Ehlis; and (6) continues to prescribe Adderall, because Adderall is a good medication.
This case and so many others demonstrate how psychiatry, and the pharmaceutical industry shows a blatant indifference to the suffering of others.
Psychiatry has failed us, and I believe a large part is due to the fact our lawmakers and the pro-psychiatry movement does not question psychiatric authority.
5. “All lived experience is valid.”
Yes, and we cannot forget how the use of psychiatric medications impacted the short-lived lives of Tyra Ehlis, Rebecca Riley, Gabriel Myers, Tyler Kowalczyk, Tessara and Samantha Crespi, Ian Carmichael and so many others.
Adverse effects of medication become the psychiatric patient’s identity and the misguided excuse to over-medicate them. Hospital staff assumed that our older daughter was having a severe mania after they over-dosed her with Haldol and she almost died from Neuroleptic Malignancy Syndrome (NMS). Week-end, nursing staff did not recognize the signal of imminent onset of NMS which is labeled in early psychiatric literature as Excited Delirium, but my husband did recognize it. Her father had searched the literature for an explanation for why she was having the worst reaction to medication that he had ever seen. In that state of Haldol-induced Excited Delirium, her organs had begun to fail and breakdown and her autonomic control of bladder and bowel then failed , along with a rise in temperature which caused her to remove clothing. The lab counts later confirmed the NMS event despite that she hadn’t yet developed rigid limbs when the emergency was addressed. When I walked into the aftermath, she was lying naked and unable to talk and could only utter surreal, high pitched, metallic, chirpy-chattering sounds. A search of the literature suggested to me that anaphylactic shock had swollen her tissues so rigidly that her vocal chords were capable of metallic sounds. She shoved her thumb into her throat, presumably to make space for air or to assess her own condition. She was angry, of course, and tossed water from her paper cup and gave me the middle finger, which she had never done before. Mom and Dad had not been able to protect her from the “Power-Take-Off” that pulled her in and chemically battered her because there was no “Safety Switch” to turn off the impersonal psychiatric machine.
Dear Daisy Valley,
It is horrifying to watch a loved one go through such torment and to know medical professionals fail to recognize and will misdiagnose the response of taking poisonous substances that are being used under the guise of “mental health medications”.
The voices of those who have been harmed need to be heard.
Thank you for sharing.