What’s Missing from NAMI and Pro-Psychiatry: A Lack of Lived Experience

RI recently had the opportunity to share my experiences as a former psychiatric patient with author Gary Null, PhD, for his upcoming documentary on psychiatry. During our conversation, I brought up the troubling 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 health consumers. I believe that advocates who have not experienced psychiatric treatment lack the ability to fully understand the suffering that many consumers suffer from adverse drug reactions.

This is, I think, a moral imperative. The use of all pharmaceutical products is really a “buyer beware” situation – and since many mental patients become compulsive consumers, their advocates have a duty to be educated and concerned about adverse reactions.

During my time as a psychiatric consumer, I have experienced and seen many wrongs in the system. Among the most serious was the liberal prescription of psychiatric medications without consideration or warning of their known risks. 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’s-like symptoms and tardive dyskinesia that made me unable to care for myself. myself I soon realized that in order to find drug-free solutions to my health conditions, I needed to educate myself.

Once I learned more about the possible medical problems that may underlie “mental illness” and alternative therapies to address them, I was able to get the correct diagnosis behind my symptoms: toxic encephalopathy from work chemicals. Only after incorporating evidence-based treatments and various complementary therapies into my regimen did I begin to recover. I also developed the skills to successfully advocate for myself and became passionate about promoting positive system change on behalf of others. (I share 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 the harmful effects of the drug on their patients. These adverse reactions were ignored or diagnosed as symptoms of a separate disease and treated with additional drugs. That’s what happened to my late brother Lenny, who has nightmare of misdiagnosis and overdruggingso what proper care and temporary recovery I also shared here. I recognized the pain he suffered when his doctors continued to promote the drug as safe and effective. If it wasn’t for the persistence of my family and my family in advocating for him, the prescribers would not have recognized his drug-induced conditions.

Questioning the “facts” of the pro-psychiatry mindset

Mind you, like the rest of the pro-psychiatry movement, I had to be one to put all my trust and faith in medical professionals and the “medicine” they prescribe to treat perceived psychiatric disorders. My initial exposure 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 more than 500 NAMI members and several mental health professionals who served as guest speakers. I was very excited to connect with NAMI members and wanted to learn all I could about what seemed like a very strong and influential non-profit advocacy organization.

After listening to the conference presenters, observing the audience responses, reading materials created by NAMI, and talking with NAMI members, it became evident that they conceptualized “mental illness” in a very limited way. 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 lead the cause of keeping all mental health consumers on psychiatric drugs at all times and at all costs, because it believed that drugs save lives. … 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. An investigation after the United States Senate confirmed my suspicion, revealing that in just two years (2006-2008), the pharmaceutical industry had contributed more than $23 million to NAMI. After a newspaper exposure, the head of NAMI then also acknowledged that the group received about 75% of its funding from drug companies.

This same movement, which helped to flourish biopsychiatry, feeds a dangerous agenda in strong support of forced treatment, possibly for life. 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 and holistic treatment provides the most realistic opportunity for mental health consumers to live healthy lives. The recent struggles of another family member whose medication-induced symptoms were misdiagnosed as a psychiatric disorder only reinforced this belief, and convinced me of the importance of becoming educated about the many adverse reactions. that 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 can really 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 from acute toxic neuropathy. Peripheral neuropathyvery painful condition that affects nerves outside the brain and spinal cordis it a known adverse reaction to this type of antibiotic. Additionally, neuropathy was listed as a possible adverse reaction to several other medications that were prescribed, including two types of blood pressure medication, a gout medication, three different nasal sprays, and an over-the-counter allergy medication. -the-counter. As confirmed by a pharmacist, polypharmacy greatly increased the chances of Max suffering 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 on my part to convince the medical providers that this was the case. From the onset of his symptoms, I started keeping a diary, photographing his adverse reactions, and filling a binder with all his medical records. I’m so glad I did, because one night, after starting a new medication to treat what a specialist thought was restless leg syndrome, they woke up screaming in pain. It started with a sudden sharp pain in his right shoulder; in a few hours they could not raise their right arm, they 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 that they were in a crisis situation and that they had 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 him. At the very least, I thought, the doctors should have given him an IV to help flush out the toxins, but the hospital wouldn’t provide that treatment for someone who believed he had arthritis.

Before I let Max go, I literally begged an emergency room doctor to have the hospital pharmacist evaluate the medications Max had been taking for the past month. The doctor agreed to just have the current medications evaluated and soon came back to say that he was surprised to learn that one of the blood pressure medications that Max was on could cause permanent peripheral neuropathy! He agreed to administer an IV, and it helped relieve some of the distress my family member had been experiencing. This was the fifth time Max had gone to the emergency room to seek help for toxic reactions induced by medications that kept being misdiagnosed. It took a hospital pharmacist to confirm what he was suggesting all along.

After a total of nine trips to the emergency room, enough was enough. Apart from the anticonvulsant medication prescribed to treat the neuropathy, the only help the doctors had to offer Max were psychiatric drugs for problems such as insomnia and anxiety, which were caused by the unbearable pain of the neuropathy toxic Rather than use 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 his underlying health conditions. First, they decreased all medications with the known side effect of neuropathy, including that for gout. Using the tips from Dr. David Perlmutter’s book Drop Acid and other alternative strategies, were able to do so safely. For over a month, his uric acid level and blood pressure have been in the normal range and he has not returned to the emergency room. We also researched supplements and treatments to help with her neuropathy symptoms. Such a treatment was BEMER therapy, which is helping my family member find some relief from a disabling condition that continues to flare up very easily.

And since I filed a formal complaint with the hospital, mainstream doctors are now working to help Max in ways that can be really helpful. For example, he 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 give answers to all our questions. Max’s neurologist also provided a referral to specialists at the University of South Florida because, he admitted, it was the first time in his 30-year career that he had ever diagnosed a patient with drug-induced toxic neuropathy. and was not familiar with suitable treatments.

Going forward, Max continues to have muscle weakness, neuropathy flare ups, chronic fatigue, and chemical exposure hypersensitivity/food allergies. U the lessons we learn from this frightening and frustrating episode are not new. First, let self-advocacy work: mental health consumers and their families need to speak up, ensuring that providers have ruled out all possible underlying medical conditions before making a psychiatric diagnosis and prescribing dangerous medication. Second, know the side effects of your medications! They can mimic the symptoms of other diseases and/or be life-threatening. Read package inserts on all prescriptions completely, and raise any concerns with doctors and pharmacists.


Mad in America hosts blogs from a diverse group of writers. These posts are designed to serve as a public forum for a discussion – in general – of psychiatry and its treatments. The opinions expressed are those of the writers.

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