How to Advocate Effectively for Loved Ones Harmed by Psychiatric Drugs

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The judge ordered me to undergo a psychiatric evaluation. I’d only been an attorney for just under five years and now a judge was ordering me to be tested. The legal brouhaha I’d managed to get myself in isn’t important, but the reason the judge ordered the psych eval is: I had had the temerity to challenge the local legal establishment by refusing to submit to what it wanted me to do. Looking back, I think I presented the judge with a severe case of cognitive dissonance, which he felt he could most easily solve if a psychiatrist declared me to be mentally ill.

To the judge’s dismay, the evaluation came back with a finding of sanity along with an observation that some might see as a backhanded compliment: “Mr. Winward appears to be particularly well-suited to the practice of law.” I ultimately resolved that legal problem, but only because I hired an excellent attorney to represent me. As the order for undergoing a psych evaluation suggested, I wasn’t being a very good advocate for myself. My attorney, however, was effective. He knew the system, knew the available psychiatrists, and used that knowledge to get me, his client, the most favorable result. After this experience, I went on to practice law for another 30+ years, but with even more certainty that the old saying “Every man who is his own lawyer, has a fool for a client” is well-grounded in reality. Effective advocacy for a cause can’t come from the person who is caught in the system’s crosshairs.

After over a decade of helping my wife with both drug withdrawal and recovery from their damaging effects, I’ve had to learn to adapt and apply ideas of effective advocacy to help her more successfully navigate the medical system, a journey that remains ongoing. For those who are currently helping loved ones through prescribed harm, I hope these insights will be useful. For those who are suffering from drug injury, finding someone who can advocate for or with you can be helpful. This is such a difficult process and no one should have to do it alone. I also understand that too many do face the system alone, and while not ideal, the following strategies will still provide insight into how to better navigate the medical system.

Effective advocates need to be present to advocate.

I don’t know if I can point to the exact time I became a constant presence at J.A.’s doctor appointments. I know that since she was diagnosed with drug-induced akathisia in 2016, I have attended almost every doctor appointment with her. It’s only been in the last year that I have not gone with her to every appointment, but these are with doctors we know and trust. Otherwise, the HIPAA release form is signed and I’m party to all of the appointments.

Mental health diagnoses are only obtained through patient self-reporting. No blood or other diagnostic tests show a DSM diagnosis and time with the medical professional is limited. Unlike an attorney, an advocate in the psychiatric realm is a key witness for the patient and his or her experience. A third-party observer of behavior and symptoms carries a weight that the doctor cannot easily ignore. Having a third-party witness diminishes a doctor’s ability to pick and choose between the patient’s self-reported symptoms in making a treatment decision. Determining relevant information is always an important part of any doctor visit.

For example, I have taken J.A. to the emergency room only twice over the years for problems caused by psychiatric medications. In 2011, I took her to the hospital because I didn’t know what to do. We had only been married three years and were both still operating under the mistaken assumption that she had bipolar disorder. Based on experiences I would have later, the doctor in the ER that day was phenomenal. He quickly figured out that J.A.’s symptoms were caused by stopping the SNRI, Pristiq, cold turkey after a prescription ran out and wasn’t refilled. I’m grateful that this ER doctor was so competent and understanding. In part, it was my good experience with him that created a baseline of expectations for what should be appropriate ER protocol and behavior.

The second time I took J.A. to the emergency room was when she was experiencing horrific withdrawal symptoms from the atypical antipsychotic Latuda. This ER visit was a completely different experience than our visit in 2011. In hindsight, we had tapered from the drug too quickly, and the withdrawal effects had become unmanageable. Tardive dystonia froze the sternocleidomastoid muscles in her neck and she wore Icy Hot patches night and day across the back of her neck to try to moderate the pain. No amount of stretching, relaxation, or therapy would release the muscles. Her neck was so frozen she couldn’t drive a car because it required her whole body to move just to turn her head. Oromandibular dystonia caused her mouth to pop open uncontrollably and her limbs were dyskinetic. The akathisia was so bad, I had to take almost three months off of work just to be home with her to keep her safe. We had an appointment scheduled with a neurologist, but it was months away. Finally, when things had gotten so bad we were at a loss, both her psychiatrist and neuropsychologist told us to go to the emergency room.

I handled a lot of the intake, explaining that J.A. was suffering from medication withdrawal. I also explained that her two treating physicians had recommended we go to the ER in order to get more rapid access to a neurologist. The ER doctor was at a loss and in my recollection, she was at least sympathetic as to why we were there. Finally, they called the on-call neurologist, who seemed unhappy that she had been summoned. Her approach and exam of J.A. was curt, perfunctory, and dismissive. As the ER visit started spiraling out of control, some of the steps we had taken prior to the visit paid off.

Effective advocacy avoids irrelevant information.

An important part of advocacy is also to remember the goal associated with the treatment you are seeking and not bring up irrelevant information that could be harmful. J.A. and I both knew by 2017 that the ER was a dangerous place for anything deemed “psychiatric,” so it was a conscious decision before ever leaving for the hospital that neither of us would talk about the most pressing concern: the daily suicidality that the withdrawal had created. J.A.’s previous struggle with drug-induced suicidality had blossomed into a full-blown offensive once she’d completely withdrawn. Prior to going to the ER, we specifically made the decision not to address the suicidality. We were at the hospital only to address the debilitating physical symptoms of withdrawal.

This was a decision we made only after a lot of difficult experiences and a very concerted effort with therapists and doctors to put systems in place in our own lives that were protective. It’s vital to take the suicidality created by these drugs seriously. I also understand that there may be times when an ER visit is the only option. The message I want to convey is to stick to the information that is relevant in the moment to avoid any additional unnecessary, even more harmful medical interventions.

Back in the ER as I watched the perfunctory neurological assessment, I knew that dystonia, dyskinesia, and akathisia weren’t typical neurological problems. I also knew a basic neurological exam would not show much of anything. The neurologist quickly made a diagnosis of “conversion disorder.”

Sometimes when you are advocating for a client in court, things go epically wrong and as an advocate, you have to scramble to make the best of a bad situation. When the neurologist said “conversion disorder” I knew I was in a comparable situation. We had only gone to the ER out of desperation, and doctors we’d trusted had sent us there, but our trust in the medical system was already severely damaged. All this had culminated in the neurologist saying in medical-speak, right to my wife’s face, “It’s all in your head.” I knew then I needed to start advocating, not for medical treatment, but for the days, weeks, and months ahead.

In that moment, my advocacy shifted from trying to get medical help to mitigating medical ignorance by letting J.A. know she wasn’t alone. With the suicidality element pressing in the back of my mind, I knew the matter had suddenly become one of life and death.

“What?” I blurted out as soon as I heard ‘conversion disorder.’ “Can’t you feel her neck? I’ve lifted weights my entire life and I’ve never been able to get my neck muscles that hard and rigid and her neck has been like that for almost three months.”

The neurologist shrugged and said in a diffident tone, “Stiff neck.”

At that point I kind of lost it, but this was partly on purpose and strategic. “You’ve got to be kidding me!” I said. “I’m an attorney. I’m not a medical doctor, but I’ve been living with the impact of these drugs every day and have seen the changes. How is it that I know more about this than you do? You’re not helping and you clearly don’t know what to do. Maybe you should learn more about this so you can do your job.”

I stopped my tirade short of security being called, but it was important to let J.A. know in a very public way that I wasn’t buying anything this doctor was saying. This had been a point of conflict with us prior to the ER visit. Even though I was attending doctor appointments with her, I would often be more deferential to the doctors than J.A. would have liked.

From my vantage point, my deference was strategic. While it might have felt justified or even righteous to just rage at everyone in the medical community, that wouldn’t have accomplished what we ultimately wanted, which was to find the best treatment options available to us. Instead, I tried to pick my battles while focusing on our end goals. It took some time and patience to clarify with J.A. that my deference and silence did not mean I was in agreement with her doctors.

I can’t stress how important it was for us to communicate with each other and get on the same page about this different approach. We found emotion-focused therapy (EFT) for couples very helpful in navigating the emotional swings that come with this process. When fighting the medical establishment, the last thing you or your injured loved one need is to be fighting each other. Her doctor’s office was about 35 minutes away, and so before every appointment, we began using the travel time to establish our objectives and focus our joint efforts on meeting those objectives, which made for significantly better appointments. It also improved our ability to communicate at home, giving us shared, foundational goals that we could revisit during the more challenging times.

After my outburst at the ER, the only option they could offer was a Valium prescription, which we turned down. We returned home emotionally beat up and feeling abandoned by the medical community. The one consolation my outburst netted us was a contrite call from Patient Services to evaluate our “negative emergency room experience.” The sad truth is that if the outburst had come from J.A., it’s unlikely we would have received that call.

If your loved one has suffered from psychiatric drug harm, they are going to feel that emotional pummeling every single day. It isn’t fair and it isn’t right, but you must keep the focus on what can be done and what can be controlled. I can’t overstate how difficult this is for everyone.

Effective advocacy requires advocating within the system and learning that system.

My biggest learning curve over the past fifteen years has been understanding the psychiatric medical system. In the beginning, I wasn’t overly familiar with the medications, the side effects, the troubling history, the schisms, disputes, and power struggles. I went in pretty much blind. The main thing I had going for me was my own experience working in my capacity as a professional. Doctors and lawyers carry a certain social gravitas with their positions, so I was at least familiar with interacting with the general public on the other side of the professional divide.

I brought this awareness to my interactions with J.A.’s doctors. The fields of law and medicine are broad in scope and depth. No single person can hope to understand all of the information. The first few years of my legal practice I spent doing a more general practice. The breadth and variation of the cases often made me feel out of my depth, leaving a nagging sense that there might be something I was missing. As a result, I specialized in consumer bankruptcy law and the surprising areas of the law gradually became less frequent. Because of this, my comfort in my area of expertise greatly increased as uncertainty dwindled through repetition and experience, but whenever I approached the fringes of my expertise, uncertainty immediately returned. Uncertainty is not something that professionals enjoy, because any esteem that comes from the societal position also comes, rightfully, with the demand for expertise.

When you are interacting with medical professionals, remember that they are first human beings whose occupation and client/patient expectations demand a high level of certainty and competence. Doctors have a dual objective: first, to be authoritative and knowledgeable, and second, to provide help and assistance to the patient. If you or your loved one introduce uncertainty into your interactions with a medical provider, you are attacking both of the physician’s primary objectives, which can compromise your goals.

The role of the doctor is closest to the role of a judge in the law. The doctor has the ultimate authority over which medications and treatments are appropriate. One of the hardest things for most attorneys to do is treat judges as human beings. On a theoretical level, we expect the judge to be impartial and clear-headed, looking only at the law, but they are human. Studies have shown that sentences are more favorable after a good lunch, but the human aspect can also make the judge’s decisions feel suspect. Advocacy always feels fraught when you cannot control the outcome and every judge rules differently.

Each physician will also be different, ranging from those who are more open-minded to those who have the “Please Don’t Confuse Your Google Search With My Medical Degree” mug on their desks. In the law, we say, “know your judge.” The same rule applies here: If you are interacting with medical professionals, know your Doc.

In order to know your doctor, though, it will require a little bit of research and googling, not on your loved one’s condition, but on the doctor and the medications that are being prescribed. I wasn’t around when J.A. was first prescribed psychiatric drugs, nor were the information sources I’m going to reference, but if I had been there with the information that is available now and knowing what we know now, it is unlikely she would have ever taken the medication in the first place. Why do I say this? Let’s walk through it.

First, I would have gone to Open Payments Data website and checked out the doctor’s name. I would have found out that the doctor she was seeing was on the speaking circuit for the makers of Celexa, Lexapro, Vyvanse, Abilify, and Latuda. As a speaker for these pharmaceutical companies, he made just over $900,000 from 2015 to 2021 as a part-time gig. If it hadn’t been for the pandemic, his side income from pharmaceutical companies would have easily topped a million dollars in just six years. You can also get older data at Pro Publica’s Dollar for Docs. I prefer the older data, because it spelled out which drugs the doctor was actually promoting. The new data requires a little more digging.

If you find out your doctor is being paid by the pharmaceutical companies, find a new doctor. It is easier than changing a judge in a legal case and you can’t go into the healing process with a biased doctor. For example, our new doctor, in the same timeframe, left managed health care to practice independently, and from 2015 to 2021, took a grand total of $12.16 from pharmaceutical companies. Just remember, whether you like it or not, the doctor is the ultimate decision maker on prescribed medications, so it is important to know your doctor from the outset. If they are on a pharmaceutical payroll while in private practice, their obligations to their patients will be compromised, even if the doctor is unaware of it, because that’s how implicit bias works.

Another problem you will have in advocating for your loved one with a psychiatrist is the psychiatric system itself. Psychiatry is a medical specialty, but it is a medical specialty with a sordid past (and present). No longer providing therapy in most places, the sole role of the psychiatrist has narrowed to being a psychiatric-prescription dispenser. If you take that away from them, you are taking away the raison d’être for the doctor’s entire medical practice. Yet, effective advocates know we cannot say any of this to most psychiatrists, even good ones we trust.

I’m approaching advocacy from the aspect of obtaining medical help in withdrawing from psychiatric medications, but the same principles apply to considering any new medications and even maintaining a current pharmaceutical regimen.

Once you are as familiar as you can be with the doctor’s inherent biases, you can maneuver the visits toward the desired end goal. For example, because J.A. was tapering a specific drug, we requested a switch from time-release capsules to chewable tablets, which allowed us to cut the pills and manage the drops more gradually. J.A. and I have had the good fortune to work with doctors who listen to us, yet I temper that statement with the knowledge that we keep each doctor within a designated sphere and don’t look to any one doctor or specialty as a cure-all.

Effective advocacy requires proper choice of venue.

As I said earlier, professionals abhor uncertainty. The medical profession is drawn up into specialties, but for medication withdrawal, our experience has been that you need a holistic approach. Attempting a holistic approach when dealing with a specialist carries with it some inherent uncertainty for everyone involved. Unfortunately, the injuries that come from psychiatric drugs don’t just impact mental functioning, they impact system-wide physiological functions as well.

Over the years, besides meeting with psychiatrists, we’ve employed pain specialists, endocrinologists, general practitioners, audiologists, ME/CFS specialists, emergency room doctors, neurologists, a functional neurological rehab doctor, cognitive behavioral therapists, emotion focused therapists, neuropsychologists, physical therapists, nurse practitioners, and others that I’ve probably forgotten. Each has played a role in recovery, some positive, some neutral, and some negative.

As we progress through the withdrawal journey, we tailor our presentation of what we feel we need, along with our progress, to each doctor according to his or her specialty. Psychiatric medications can wreak system-wide havoc on the body, but the endocrinologist doesn’t need to hear about that, she just needs to test thyroid function. The difficulty is in crafting a holistic approach from a fractionalized medical system. Focus on where you are, the doctor-venue that you find yourself in, and stick to the narrow range of what that doctor can do.

Effective advocacy requires education, experimentation, and patience.

In order to be an effective advocate, you have to know what is happening when you go into the doctor’s office. You have to know what the drugs do and what the side effects are. Don’t rely on the doctor to educate you. Read the medication labeling. Most psychotropic drugs come with massive documentation. Develop a relationship with your pharmacist. Pharmacists are extremely helpful in looking at drug effects and interactions with other medications. Read Robert Whitaker’s books, Mad in America and Anatomy of an Epidemic. Learn the drug types. In hindsight, I wish I’d known that I needed to learn all of these things sooner, but as soon as I was able to report negative drug effects to J.A.’s doctors, the approach to healing made a significant, positive shift.

The education process to make it through psychiatric drug withdrawal remains ongoing. I read or listen to any book I can get my hands on that I think might help, even peripherally, and I’ve been doing that for years now. Right now I am reading A Straight Talking Introduction to Psychiatric Drugs: The Truth About How They Work and How to Come Off Them by Joanna Moncrieff and I wish I’d stumbled onto this book years sooner. This book distills in clear prose the foundational things you need to know about what each psychiatric drug does, as well as what someone is faced with when going through psychiatric drug withdrawal.

I was wildly eclectic in searching for answers. Some things I came across spurred us to try things that completely failed. In J.A.’s earlier article, she compares drug harm to a van crashing and each passenger’s injuries being varied. This is why experimentation is so critical. Some things worked, some didn’t. Some approaches worked for a while and then stopped working. Some things we’ve come back to again and again. When something works, run with it, but remember, nothing is going to be as simple as just taking a pill. If your experience is anything like ours, the prescription cocktail J.A. found herself on was a direct result of doctors experimenting on dosages and medication types. Getting off the drugs is no different, only the withdrawal process ends up being experimentation in the other direction with a lot less support from the medical community.

Effective advocacy requires developing lasting relationships.

In my legal practice, knowing how opposing counsel will react and the strengths and deficits of our respective positions makes advocating for a positive result for a client much more likely. It also opens up negotiations for situations that can be mutually beneficial. It isn’t as glitzy as winning a court argument, but in general it is much more effective in almost all cases.

Advocacy for family members within the realm of psychiatric medication harm is always more of a negotiation than a direct attack. Bundling up all of your evidence and printing out reams of paper explaining the research on drug harm or withdrawal effects to make a grand presentation to the doctor and win your family member’s case won’t work.

First, you need to develop a relationship with your doctor and that only comes with time. It may also require switching doctors if there is no way to truly communicate or if they are unsupportive of your main objectives. The doctor needs to learn to trust you and your family member. Once that trust has been established, then options begin to open up that you can explore with the physician, but gaining trust is always the first important step, keeping in mind that trust is a two-way relationship. So, when a family member has been harmed by medications, helping them recreate trust is an important role of the advocate. The creation of trust between doctor and patient, the advocate and the patient, and the advocate and the doctor is necessary to achieve the desired goals and a better outcome for your loved one.

Effective advocacy is a daily practice in an infinite game.

When a case goes to court, the judge enters a ruling and there are clear winners and losers. A courtroom decision is an example of a finite game, a game in which there is a bounded conclusion. Advocating for a spouse or loved one with medical professionals rarely, if ever, has such a clear-cut conclusion. I found James P. Carse’s view of infinite games helpful in dealing with the shifting ground of the medical system. There is no standard set of rules and what rules are there can be subject to constant shifts and changes, but the objective is the same—relief, recovery, and better health for our loved ones. We must use all our wits and the experience at our disposal to keep events progressing in a way that makes healing more likely. The important aspect of the infinite game is to keep playing, even when there are setbacks.

Advocacy is not just about medical professionals, though. You must also advocate with family members who don’t understand or who are not empathetic to what is happening. You must advocate with friends, neighbors, and employers. Intriguingly, probably the most important focus of your advocacy is letting your loved one know you support them. I strive constantly to listen and understand J.A.’s experiences. When we reach an understanding about what is happening and what can be done, my advocacy on her behalf improves. It is a daily practice, sometimes hourly, to remind ourselves of how far we’ve come, what works and what doesn’t, and what steps we can take to win the current day. Daily practice, perseverance, and focus is the only way to address and accomplish such a large task.

Effective advocacy requires a working knowledge of drug harm and a keen focus on the battle at hand.

The word “advocate” comes from the Latin advocare and it means to “add” a “voice.” My job as an advocate is to add a voice to J.A.’s suffering. The added voice is most effective when the speaker knows the true causes of the suffering. The voice must be raised, not just for the personal, but also for the broader systemic cry for compassionate and humane treatment with informed consent that more effectively avoids the dangers of psychotropic drugs.

In this way advocacy is a two-track process. The physician’s office isn’t the place to launch a full-scale attack on psychiatry or demand systemic change. The main focus should be getting your family member the care they need.

At times, J.A. and I have both struggled to keep our focus on the two different battles, but you can’t engage in battle when you are too wounded to fight. In large part, that is why it has taken us close to five years to begin writing about these experiences. Yet, the efforts of everyone here at Mad in America continue to be “added voices” we value as we continue to forge our path.

Finally, the larger cause remains important for anyone adding their voice. As J.A. and I have both found, the larger cause allows us to transcend personal suffering to bring more power and strength to the collective voice of advocacy surrounding drug harm. It’s a voice we all must learn to use with and for our loved ones so they know they are not alone. Effective advocacy is vital to creating the optimal healing environment for everyone impacted by these drugs.

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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.

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48 COMMENTS

  1. I couldn’t even get through the article. My entire family was against me, while they were doing ECT, handing out a borderline diagnosis, locking me in wards. Trying to advocate for myself was futile.

    They knew I had no one. The staff always had to call me a cab when they discharged me. I said I would walk but they said no. Too much liability, I guess, to just let me out on the street after shocking my brain and leaving me in isolation and injecting me. After the first couple of times, they would just call the cab automatically because they knew there was no one who was going to come pick me up.

    And now I’m being denied both any form of palliative care and euthanasia. What am I supposed to do?
    Just keep suffering. More decades of endless suffering. Disgusting, disgusting, disgusting system.

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    • Nothing against the article…I agree with Kent that an informed and diplomatic advocate can be lifesaving. I’m sure it doesn’t hurt that he is a lawyer.

      This topic just brings up a lot. I’m pretty sure my efforts to advocate for myself (which weren’t always diplomatic because I was in pain) were what led to the borderline diagnosis. I remember when the system pushed me too far, finally, after decades of harm, and I wrote a bunch of Google reviews about my former providers (nothing else had worked. A formal complaint to Patient Relations had resulted in advice to “Get a Life Alert” and then silence). I remember one line of one of the reviews went something like:

      “Who was going to defend me against this onslaught? Defending myself never worked as I’d already been tagged as the one with the problem.”

      That’s really how it was. Sometimes it’s not a matter of figuring out the right way to ask for something — it’s a matter of getting the right person to ask for that thing for you, or to stand beside you while you ask for it. If you don’t have that person, you probably need to remove yourself from the situation while you still can.

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    • Katel
      You are in my thoughts.
      My hope is that you find some peace somehow after this terrible suffering.
      I shall enter my personal comments surrounding my experience( how do we manage in afew words!) after reading of your suffering and abuse. I hope also that some of your network have begun to understand, how, alone, one can never be in this dangerous area that is Psychiatry.

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    • KateL,

      You are correct that it helps that I’m a lawyer. It also helps that I’m male and not the patient. Thank you for at least picking up on the fact that it could be almost impossible to advocate for yourself. I wish I had an easy answer for that dilemma, but I don’t. It is decidedly unfair. The suggestion that springs to mind is to try and find someone who you can enlist their help to play the role of advocate for you. It really is something that would be extremely difficult to do on your own.

      I wish you the best in getting through what I know is a horrendous trial.

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  2. Kent, thank you for your insights. As a Therapist, I often have to also act as my clients advocate. To encourage them to work with and yet also challenge their med provider when side effects become as detrimental if not more than the pathology and trauma my clients are trying to address and work through. I also applaud your work and willingness to care for and advocate for your spouse; it is often helpful but difficult to find someone who is objective and compassionate; as well your honest perceptions shared in your efforts to find care providers who really do provide ‘Care’. A quote by Carl Jung- “Please remember, it is what you are that heals, not what you know”.

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    • Kudos for working as an advocate in the therapist capacity. My wife and I have both been fortunate to have therapists like you that back up our lived experiences. A therapist can be a powerful advocate, especially for those who may not have a family member or spouse.

      And in looking at the Jung quote, it reminded me that one thing I didn’t mention about advocacy is that it is humbling when done right, because you don’t know many things. You have to be willing to be wrong and still preserver.

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  3. Agree: important, intelligent, clearly expressed and full of the wisdom of long experience. The ideas around the infinite game, the “added voice”, being willing to advance by small steps, and occasionally to compromise to achieve them are compelling–and encouraging. Many thanks to the author and his partner.

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  4. Thank you for sharing your story. I think it reflects the experience of those of us who have conditions that significantly impact our mental health.

    I only wish I had come across this sooner, as I was blindsided that the SSRI I was prescribed turned out to do far more harm than good. The Rx landed me in the hospital in crisis. The silver lining was that I finally found an amazing psychiatrist, and while I was there, they did a rapid step down since they could monitor me closely. I know circumstances differ here in the article, but I would caution strongly against quitting psychiatric drugs cold turkey. Even managed, it was a b*tch and a half for me, mentally and physically. GI issues on top of it.

    I’m blessed to have a husband that advocates for me (and a junior year Psych major daughter). Advocates are a must! Especially because I’m the sort that does pop off on dismissive doctors or those trying to flex master status on me

    Try getting in person therapy in my area or an appointment in 6 weeks. Better odds with Powerball. I’ve seen social workers practically need therapy themselves after trying to find care for clients. Seems a lot of the psychiatric professionals took a little too much of a liking to telehealth during COVID. It’s not nearly as effective as in person, and they damn well know it. Get out of the living room and practice with live humans, people. There’s more to this than “How are you feeling today?(Run checklist). How’s the medicine working? OK, great. Stay on the same dose. Byyyeee!!” Cha-ching.

    Mental health care in the US is godawful. Where are the results of the oft touted “investments” in mental health care? They’re in slick ad campaigns about “awareness” with outreach numbers that basically just give you a list of providers in your area. Who, once again, you can’t get in to see for 6 weeks or more.

    And we haven’t even begun to see the COVID generation impact. We need to make radical changes NOW before that tsunami hits. Buckle up, ER docs.

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  5. Thank you for sharing the valuable knowlegde and insights you and JA have gained through this torrid process. My (similarly supportive) partner and I reflect on some of your recommendations that have also worked for us since the onset of my iatrogenic illness from neurotoxic medication harm circa Jan 2018, and living with debilitating post-taper damage since Jan 2020. While my partner has not been able to add his voice, his presence at all my appointments was such a necessary protection for me. Without him alongside me I hate to think what further damage and diagnoses they might have heaped upon me, while squirreling me off to psychiatric ward with false assurances of respite.
    I don’t so much mistrust the medical system anymore as have a deep and reasoned knowledge of it’s arrogant ignorance and potential for harm. (ex-health professional myself). I stay away from them as much as I can. While grateful for those who speak up from within.
    I have read Joanna Moncrieff’s book you mention, and share it where I can. Thank you for your voice. And also my best wishes to J.A. whose writing I so admire. Sarah Preece, New Zealand

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  6. This article is so profoundly relevant to so many….I have suffered, as JA, tardiv dystonia blepharospasm ( the latter twice) currently Sjograns Disease which has destroyed my salivery glands. The Medic here (UK) put me on the drug that caused this twice!
    This doesn’t touch on the abuse I have endured ( seclusion for 20 days during Covid as one) the ensuing trauma and absence of any care or therapy within these settings. I have advocated far better for myself than many; SO important to have Advocates present in CPA meets ( ward meeting here in UK) if an In patients, ideally one at least personal and an Independent.
    The Out patient journey . Agree totally . Somehow find a Consultant who is empathic ( Mine is a wonderful woman) .. However yes their job is still to prescribe even when they see the torment of the drugs and their toxicity ..far worse than any Psychiatric Illness. My withdrawal from the LAST one is challenging.
    Joanna Moncrieff is an inspiration.
    JA is blessed to have you for her Advocate. My family have had faith in a system that they have no comprehension of but I have a a tiny number of friends who comprehend totally. They have no sway over an archaic mental health system, but even that we are trying change here.
    You are so right. It is about relationships all along the line and individuals who make a difference and who have not become de-sensisitised or have God Syndrome.
    Wish me luck, while I pray meditate and hope that I haven’t got cancer of the parotid glands ( from Sjograns).
    My long held dream is Sposed to be happening…working as a Holistic and Peer Therapist doing 1 to 1 breath, movement and Touch therapy Work on local wards. Something I ve striven to do…
    Individuals inspired me to train (within Occupational therapy teams and Yoga Practitioners) when first hospitalised, privately in 1983.
    Advocacy is so much needed on the Wards here in UK and for Out-Patients until we see changes in the law.
    Thank you for this so resounding article and all hail Professionals who do Care.

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  7. Like KateL…this post “…just brings up alot”.
    ALOT.
    As wonderful a learning arc as this was for the author….
    This is for folks who don’t have an attorney who loves them & is advocating for them…..(the rest of us)….

    “Know the enemy, know thyself”. Sun Tzu

    “The first casualty of a diagnosis is your
    credibility.”

    Re: mirroring as a tactic; recording as a tactic; language/terms as a tactic…AND…

    “I grasped the synchronicity of the LAW and PSYCHIATRY. It was not about being right, it was about being effective and in this system, COST AND LIABILITY CONTAINMENT were key to understanding Every. Single. Thing.”
    (Part 4-“On Becoming an Articulate Handgrenade”.)

    ***Parts 1- 4. “A Unicorn: Changing a Diagnosis”, RxISK.org-8/2018. by ME.

    And speaking of credibility, having an attorney in any of MY ER ‘visits’, appointments, hospital stays (medical damages-heart failure, etc), or phone outreach would have changed EVERYTHING IMMEDIATELY…. Including the anaphylaxis, the texted (!) sexual coercion attempt as I neared my agreed-upon exit date, 3 years of seizures following withdrawal, impossible to have seriously addressed (‘good luck!’)… and the crisis-filled re-entry back into the world without an adequate income or any kind of support…and a head & body full of a decade of trauma.

    I’m good now…but…

    This article has struck a nerve with me. Hard to relate…except for the wife’s suffering.

    The fear of LIABILITY in appointments & hospitals was so strong you could smell it, in my experience. An attorney in the room would have exquisitely, quietly clarified the rules of engagement like a silent nuclear bomb. My SAFETY would have been the dominant feature.

    THAT is based on my lived experience…and knowing my enemy.

    Good luck. Really.

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  8. KateL, I’m @ [email protected] if you would like contact.
    I was completely alone also.
    I can offer thoughts on avenues of support you may not have tapped yet. I’ve felt some of the despair & exhaustion you seem to express. I don’t know for sure, of course.
    In the past, in a modest way, I engaged with some other folks regarding processes….the late Paula Caplan, PhD, an author, contributor here (& so much more), and tireless fighter for psychiatric ‘reform’ & transparency brought some people to my email, looking for some info. It seemed to go well.

    It’s been awhile, but…up to you.

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  9. While everything you say is true, you left out something important: why was JA tapering off the meds? Was it done under specific Dr orders? My biggest problem as a PMHNP is getting people to follow instructions and not stop meds on their own. I stress over and over the seriousness of psych meds. They still act like they are taking aspirin. I luckily have never had an incident from stopping meds. But it is very frustrating for all providers.
    Really, explain why she was coming off meds if she needed them.
    .

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    • That’s very rich, coming from a provider.
      People who have been on psych drugs (again, not meds. Drugs.) are excruciatingly aware of the “seriousness” of these drugs. We are not the ones who brought the drugs to market without ever really testing them. We are not the ones who placed profit over our own well being and the well being of those around us. We are not the ones who got caught trying to bury evidence of adverse events and life threatening side effects. We didn’t fight tooth and nail against black box warnings. We didn’t diagnose people who were suffering the adverse effects of the drugs (akathisia, tardive dyskinesia, cognitive impairment) with ever more scary sounding mental illnesses. We didn’t deny for as long as we could get away with it that people would go into withdrawal if they stopped the drugs

      We know how serious these drugs are. Most of us wish we didn’t.

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    • Patient has long-term, painful, potentially life threatening withdrawal period from prescribed drugs for which there was not only no informed consent, every aspect of the drug marketing had been a lie (“this med is believed to correct a chemical imbalance in patient’s brain which we never tested for but don’t worry, the drug has a very low side effect profile, patients do very well on the drug, and any minor side effects like, say, inability to control one’s bowels, are only temporary and should go away after a few days once patient’s body adjusts to the medication.”) If, in the very unlikely event that the patient still complains once the drug regimen has been instituted, there are several options. The provider can label the patient as treatment resistant or non-compliant; provider can diagnose the patient with a more severe mental illness, like one of the many bipolars or borderline or the trendy new one, borderpolar. In any case, a second and third drug can be added at this time. One of these will most certainly be aimed at correcting a second chemical imbalance, which is also never tested for, the other is to address a newly arisen gastrointestinal or sleep issue. At any point from the start of “treatment with medication” the patient will have a high likelihood of experiencing akathisia, which feels so tortuous they begin to have thoughts of suicide. The akathisia will go undiagnosed, while any indication of suicidality on the part of a patient will lead to an inpatient stay where, well, you thought you had problems before…
      If for some non-compliant reason the patient decides enough is enough and they need to get off all these prescribed drugs, they will very likely go through very painful, long drawn out withdrawal period during which they experience highly disturbing problems with every bodily system and can’t confide in anyone what’s happening for fear of being told that they need to go back on their medications and were stupid to go off them while the providers who prescribed the drugs for decades while insisting there was no withdrawal but now claim to be experts on tapering chastise them for not following instructions…

      Yes, I can see how this would be very frustrating for all providers.

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    • I think a lot of providers at some point in their career or training came to suspect that if people felt better with medications would ask for more instead of stop taking them. After all drinking alcohol, smoking, drugs, etc, do feel “good” at the beginning (they at least diminsh “social anxiety” and peer pressure, hahaha!), and after a while it feels very bad KEEP taking them. Yet it’s hard do stop because, I think, even if latter you feel bad, for a short while you don’t feel THAT bad because you didn’t take them. Speaking of alcohol, drugs, tobacco and nicotine.
      But psychiatric medications cause improvement(!?), patients stop taking them and they FEEL worse by not taking them? Or was it better?
      “What kind of rational explanation could there be Rob”? (from the movie “High Fidelity”).
      Before the trivially predictable answer pops up, one more item: “No one forces people to keep drinking, to keep smoking”. “We didn’t push it up your nose” (from the movie Bringing Out the Dead). Etc., and I guess stopping psychiatric medications is not a negative addiction. It might feel like repelant or repulsive, but…
      I hope you elaborate at least in the items in this, my post. “I do want to know!”, as Billy said, in another context speaking of VERY boring research at a top facility (not really but close enough). And yeah, I am not talking about the lack of informed consent on withdrawal from psychiatric medications.
      I can see how an ape can fly a space machine just with electric shocks, and obvioulsy smarts enough to keep their human “carers” to stop shocking them if they “fly away”. “That Pavlov fellow did knew what he was talking about!” (I’ve heard that quote somewhere, but I forgot!).
      And I wouldn’t call a cannon ball that can maneuver “a little” a ship either…

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    • Mr. Mason, Re; “My biggest problem as a PMHNP is getting people to follow instructions and not stop meds on their own. I stress over and over the seriousness of psych meds. They still act like they are taking aspirin. I luckily have never had an incident from stopping meds. But it is very frustrating for all providers.”

      Here’s some insight from a former ‘lifelong” CLIENT (not “people” or “they”)…

      If you’re supplying drugs that alter client brain function on a CELLULAR level, without assurances (not guarantees) of a well-supported (NOT the empty “evidence-based”, tired rhetoric]…and in my 15-year ‘experience’ being targeted & exploited by your industry….

      I suggest you exercise the much vaunted “insight” (repeated ad nauseum to us “people” by YOUR industry) and realize it’s YOU & YOUR INDUSTRY’S CREDIBILITY that is at issue. “They” (clients) aren’t concerned about your “stress”.

      Perhaps MUCH MORE time invested communicating the real-world dangers of ingesting these drugs & possible/probable short & long-term effects & prognoses would work….for THEIR (again, clients) stress.

      Perhaps ‘all providers” who are “frustrated” by those “people”(clients, sigh) can start accepting that the “evidence-based, absolutism (‘lifelong, chronic, acute, bad genetics [but “no shame[‘) they espouse isn & hasn’t effectively addressed the human condition for DECADES…scientifically or any other way (ECT, anyone?)

      In 2020 terms, your algorithms are down-trending in ameliorative or recovery (gasp!/blasphemy!) analytics.

      Big Insurance & Pharma’s paid army of legislative, medical & academic sycophants keep creating jobs for initially well-meaning individuals who think drugging clients (addiction/often for life, as intended) is good treatment.

      That’s YOUR personal choice every day.

      My suggestion-try another approach if you want to help people suffering from the human condition-start here…”The Hostage Brain” by Bruce S. McEwen, Harold M. Schenck and “The End of Stress As We Know It” by Bruce S. McEwen….and continue to expand your view….of yourself & ‘them’.
      Very science-y (evidence-based) and definitely not a sexy, gasp-inducing read.

      He repeatedly returns to the theme of nourishing (diet, sleep) the brain, exercising the body, & the wondrous adaptive plasticity of a brain working to get “unstuck”….
      NOT simple or complex sedation, dopamine blocking, or interference with neurotransmitters….which is what you give “them”. ..for life.

      I successfully forced the psychiatric industry to rescind/vacate my “lifelong” bipolar diagnosis following 11 years of iatrogenic, quantifiable, independently documented damages-side effects. I forced them to give me a psychiatric MD-guided withdrawal path OUT-IN WRITING.

      It took 2.5 years, followed by 3 years of seizures. WE agree-the psych drugs are dangerous. I barely had anything left with which to rebuild and re-enter society, body & soul.

      MY POINT TO YOU….if they were so eager to jettison their scientific doctrines (“evidence-based”, “lifelong”), over a relatively minor threat (unspoken)… anaphylaxis….and possible ensuing legal settlement…AND ‘withdraw’ their “treatment”…which put them at enormous risk, if I WAS “REALLY” SMI and EVER hurt someone intentionally or not….THEY’DE BE LIABLE to the ostensible victim…”Why did you ‘negate’ that “lifetime” diagnosis? And take her off those “meds”? Look what she did??”

      HOW CAN THEY USE LIFETIME DIAGNOSES, YET WITHDRAW THEM OVER LIABILITY CONCERNS….NOT MED/PSYCH “EVIDENCE-BASED” SCIENTIFIC FACTS?
      These are YOUR ‘PEOPLE’, YOUR tribe.

      The answer is obvious…cost & liability containment, the long game.

      This is the industry you support.

      Credibility, anyone?

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      • That is really well said.
        And, not to spoil the chance of the multiletter title fellow, of how long would have taken the fellow to catch the irony in this very well written, articulate, clear and convincing narrative (talk about evidence based! 🙂 ), as an example of who bears real responsibility?. And in what way!. And how twisted the blaming game is in reality? In real practice.
        It illuminates in clear and convincing terms to my mind, probably no clear warning at least from some providers can tell how difficult, perilious, harmfull and dangerous stopping medication really is.
        If for nothing else, not saying it is actually THAT relevant in the majority, because it depends on the individual at least trying to withdraw UNDER supervision. What I am trying to say is: will be different for each and every individual and most likely providers have no crystal ball to warn about that for each and every individual.
        And I think I’d be remiss if not saying: and why starting such medications, AND making certain diagnosis is equally difficult, perilious, harmfull and dangerous, to say the least.
        Things that without this narrative the comment it refers to seems dishonest by omition and misleadingness, to my mind.
        Which KH comment very powerfully and competently addressess.
        Thanks KH.
        But the chance to count how long to catch the irony, I guess is now “biased”, or maybe not, but I’m not counting…

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  10. Thank you and J.A. for sharing your experiences, your wise insights and useful resources. Your own early interaction with the psychiatric system is amusing but only because of the possibly slant ‘verdict’, the clearance to practice, and your subsequent successful career (I doubt it was amusing at the time). I am very sorry for all that J.A. has endured.

    I am negotiating this system as well. I dissociate and because of this do not always know what happens to me and my body. Before I restarted therapy and psychiatric meds, and not long after starting to dissociate–as a middle-aged adult–I started experiencing physical sensations similar to when I was knowingly and willingly on or withdrawing from various psychiatric meds for OCD and depression in my 20’s and 30’s. For one example, for a while I had vivid experiential dreams and a ‘buzzing’ sensation in my head like and only like when I was withdrawing from a particular depression med years ago. I am seeing therapists and psychiatrists again and have read up on the one psych med I know I’m taking. However, again I am experiencing bodily sensations such as severe cramping that do not match up with side effects of my known meds and have not been medically attributed to anything.

    After my dissociative episodes, I often recognize that my body was handled (thru many observations, including face mask indents, plastic taste, tongue feeling bruised and teeth hurting, face feeling freezed, new bruises and punctures, and things changed in my locked home). No doctor, psychiatric or otherwise, will or can tell me what is happening. Law enforcement asks if I need to go to the emergency room. Family, friends, and neighbors are quiet, angered, blaming, slant, or extremely vague. I do not know who to trust.

    Although I knew I had not been to court (except as a student, a paralegal and as a support friend), I even went to the courthouse to see if there were any records on me I was unaware of: marriage license, guardianship, competency judgment, conviction, civil judgment. None. I went to the Seattle Times as I thought they might find this interesting and do some investigative reporting. This was not a story of public interest.

    I am still trying to navigate the system and my life, but, whew, it is very confusing and maddening. It is unjust. One should at least know, much less give or refuse consent to, what is happening to their own body.

    Fortunately, I do have a cat I love, meaningful hobbies, and I am attempting to finish some writing projects for my first publication.

    I will utilize your suggested resources. Thank you.

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  11. Lawyer, advocate partner, treatment coordinator, researcher, writer, strategist, physician educator, discoverer, advisor, gadfly, defense witness. Not just an advocate from what I read.
    Irony that it was all in the head, said the neurologist, just it wasn’t ideas gone wild in the patient’s mind. But confusion in the neurologist’s one, way above the sight of a patients dread. Torticollis on a neuromind never looking down, never touching the ground.
    Even if it felt tense or moving in the muscles below the head, it was going wrong in the brain above, like a reflex run amok outside of the neurologist minding sight. The neck didn’t ring a bell, not even checking a patient’s sight or smell. Not in his brain nor on his mind, but “above” his soul, what was again a neurologist’s role?…
    And neurologists in my country, Mexico, rarely get any job, they are, from what I understood and remember, subemployed. I would have imagined one would have been happy to have a patient, but I guess “knowing” he was dealing with adverse drug reactions or side effects, that clinical presentation alone took away a lot from his, I hope, good intentions, and apparently competency. Documenting damages is not the prefered mode of medicine outside of forensics I imagine. The medical omerta and peer pressure come to my mind.
    As a complementary short personal note: I did became an advocate for my now exwife, not as involved as narrated by EKW. She did that for me too!, just a devil’s advocate not looking to actually make my case, ever. She wasn’t advocating in order to make me a Saint, but a non or deceased person. Literally. So far, I have outrun her wishes, I think!?, they only travel so fast…
    Very enlightening narrative EKW, thanks, I hope ALL keeps improving 🙂

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  12. Your article was fascinating. And helpful. As we withdraw – it pays to keep small goals clearly in mind as well, as larger end goals. As we suffer we learn to become strategists and diplomats. A difficult road.

    I wish you and your wife well. I manged to do it quickly (three years) and now I advocate for education around the prescription of these drugs. There is a place for medications, but we need mental health systems that have space for other things, and respect for those who wish to withdraw from medications.

    Thankyou for your article.

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  13. Mr. Mason: Re: “I luckily have never had an incident from stopping meds.”

    Gosh…the “incidents” are happening after clients take the drugs! While ‘under the influence’! AND AFTER they stop. (You ARE lucky to “have never had an incident”. Congrats.)

    The ‘incidents” are happening as you talk to clients in appointments (white-knockling it).

    EVERY DAY ON PSYCH DRUGS IS ‘ANYTHING CAN HAPPEN’ DAY. One minute your O.K….the next nano-second later, you’re looking in a knife drawer…you’re hiding under the bed, you’re drinking to ‘make it stop’, you’re sobbing, you’re spending money to distract, you’re ANGRY…AND if you desperately ask for help, cessation, ‘adjustment”,… it will accelerate, compound (mo’ drugs) or be viewed as the cruelest assessment possible…”Clearly, this is a worsening of YOUR mental illness”. Meaning mo’ or different drugs, more chemically-induced interior chaos…that will be manifested as…repeat, repeat, & repeat.

    The snake eats its tail. Infinitely. A lifetime diagnosis/sentence.

    If there is no hope….
    It’s Despair. The industry views it as “The worsening of YOUR mental illness”! (Are you getting it?)
    The “incidents” continue, morph, and metastasized after stopping, sometimes for years. (See my 3-year seizure record from a DOCTOR-GUIDED 2.5 YEAR WITHDRAWAL.)

    Respectfully, I am not convinced you are fully informed regarding the drugs you are prescribing.
    Your characterization of how YOU ‘feel’, what YOU ‘expect’, & YOUR frustrations caused by client’s forming opinions, tactics, & behaviors as autonomous beings…while YOU, A SERVICE PROVIDER criticize CLIENTS decisions regarding…THEIR lives… is oh-so-familiar to many readers here.

    We’re just not doing it right!!! Goddammit!

    Infantilization is a well-known psych-tactic.

    So so so many are very-well acquainted with the industry’s doctrine of “I know what’s best for YOU”. And providers annoyed, patronizing, ultimately hostile reaction when CLIENTS make decisions based on poor/incomplete/false drug info….or….thinking for themselves, their lives…and that includes the drug-fueled Despair (and fear & anger).

    How dare they?

    KateL sent a crystal clear message to you….”We know how serious these drugs are. Most of us wish we didn’t.”

    Look to yourself & the industry you represent.
    It’s about what you don’t understand and refuse to admit, and apparently, the absent compassion. We want, we need, humility and compassion from providers. A willingness to acknowledge the existing SCIENCE regarding the dumpster-fire, roulette wheel of psych drug prescribing…and the cruel, crippling results. And the LACK of success of the industry’s status quo policies.

    The psychiatric/pharma industry has, perhaps, mislead you….also.

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  14. This is excellent advice. I really enjoyed reading this article. Thank you, and best of luck to both of you with overcoming the drugs harm. Your wife is fortunate to have you.

    My one little comment is that I don’t see anything wrong in, when one sees that the doctor is not helpful, just to agree to everything, to accept whatever is prescribed, to leave ER/Doctor’s office safely, and throw out the prescription.

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    • A prescription for Prozac was thrust at me after I became cluelessly weepy following sudden withdrawal from pain medication after the C-section birth of Catherine. I never took a single pill of Prozac and eventually threw out the prescription. So why did I even bother to go to the pharmacy to fill the prescription in the first place? The answer is that in that moment I was feeling needy and the filling of the prescription felt like I had participated in a dynamic of care; I was really just ratifying that I needed to accept something in order to feel that someone had shown concern for me. Before this interpersonal transaction, all i knew about Prozac is that it was a drug name that was used in derisive remarks among high school students. I’m glad that I never used the Prozac because several years later, I learned that SSRI’s can cause mania.
      I forgot to mention that upon discharge from the hospital when I was wheeled outside to the sunshine of a beautiful day; the daylight, the blue sky, the colors of flowers, immediately raised my spirits so effectively that I felt as though i was swimming up from the depths of a pool and breaking the surface for air. I immediately felt released from my anxiety and sadness and felt like my familiar, optimistic self and ready to go home with my precious baby.

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  15. Excellent Article ! The dilemma that I see as a failed advocate is that so many of us become swept up in the psychiatric power imbalance before we have made sense of what is happening or have been able to educate ourselves and to have discerned the extent of the conflicts of interest and deceptive dynamics. How could I also leave out the reality check that “survival of the fittest” does rule the day and has no pity for the “canaries in the coal mine”. There has never been an age without terrible injustice. The challenge to live with compassion and kindness is always noble but always exposes our own selfishness and rationalizations.

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  16. This article will be added to brilliant contributions which have helped so much in my carer’s journey, Moncrieff, Tanya Frank, Horatio Clare, John Read etc.
    I was advised by psych only to refer to the R College of Psychiatry’s website. I am forever grateful that I cast my net more widely. I will be archiving your article, underscoring the most memorable lines.
    Thank you.

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