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Child Psychiatrist /Adult Psychiatrist

How to Advocate Effectively for Loved Ones Harmed by Psychiatric Drugs

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.

A Physician with his patient.

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.

*** 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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