Once you have entered a psychiatrist’s office, a psych unit, or a mental health center intending to find help for your emotional suffering, a process begins. At first, it appears organized, as you relate your feelings, history. A diagnosis, or diagnoses, are assigned to your condition, drugs and other treatments recommended, a schedule and appointments set, some reassurance offered. And now you are in the mental health/psychiatric system.
That’s where I found myself as a teenager and continued to find myself into adulthood, but it wasn’t ever the carefully laid out treatment I’d expected. Caregivers, facilities, doctors changed aimlessly, as did psychiatric medications, as did the quality of care I received. I was my diagnostic labels, and after a time, called treatment-resistant, noncompliant, frequent flyer, danger to self. How could my behavior not spin out when my care—care that I trusted, that told me I would always wear the cloak of mental illness, need it for stability—was itself inconsistent, volatile, and reckless at its core?
Yet, I still had vision during all those years, would gather my strength, try to make my life actually happen. I held a few jobs, earned a fine-arts degree, maintained a couple of rocky relationships, relocated to a new city. But those ended each time as my fears crept in and doubts about who I really was fanned the flames. All would go under, shadows of who psychiatry claimed me to be dancing around the wreckage. Still, in all that, a small light remained inside me, always glowing, always signaling to me, “You are more than what these systems have put you through.”
“Out of control” reasonably describes me the final three years I spent under psychiatric care. Between periods of some calm, I self-harmed and spent time in psych units, mostly on temporary detention orders, almost monthly. Police, ER nurses and doctors, psych nurses, and psych doctors all knew me well.
Tranquility during these years eluded me, though I kept a few friends, went to therapy, remained clean and sober, and visited family. Usually, however, I felt I was grasping at the ropes holding me above water, and then I’d lose my grip. Thinking sped up, ideas and words flowed out at a higher volume, at inappropriate times. Anxiety and a low-level anger about people, being with people, permeated my waking moments. An overriding feeling of needing to get away, find sanctuary filled my awareness. Was I the problem, or were they?
And I’d wonder if I just belonged in psychiatric hospitals. How could I navigate life, make a living, have a home?, I’d ponder, and that thought rolled over and over in my mind. Overwhelmed, the pot boiling over, I would find relief in self-injury, knowing that act would lead to a brief period of dissociating, then the distraction of changing up whatever therapy had become, a time of steadiness, and a dim hope that perhaps after climbing up from this dive, I might embrace the world despite its quirks, spikiness, uncertainty, ups and downs.
But you can’t put the lack of control all on me, and not just because I have bipolar and borderline personality disorder diagnoses. My psychiatrist was adding more psychotropic meds, then meds to deal with the adverse effects of those meds, all too often. Psychiatrists at hospitals would change, subtract from, and add to the regimen. Some meds set off IgA vasculitis, causing spotty red rashes (blood vessels bursting under my skin) that were unbearably itchy. I gained 70 lbs., had restless leg syndrome, and other health issues.
Between 2016-2019, in addition to psych-unit staff injecting me with Haldol, Ativan, or Geodon to tame my behavior, I’d been prescribed Vraylar, Cymbalta, propanolol, naltrexone, Mirapex, Pristiq, Cogentin, Neurontin, lithium, and Seroquel. By 2019, I took the last seven meds on that list daily. Then something startling happened that August. During a regular check-in with my main psychiatrist, I asked if I was on too many drugs. Without much comment, she told me to stop taking Seroquel, Cogentin, and Neurontin, and to turn in whatever of those I had remaining at home to the nurse the next day. As usual, I complied.
Within days I fell ill, so sick, with vomiting and diarrhea, confusion, exhaustion. I received services at a mental health center and couldn’t call the doctor directly, only the psych nurse. He noted my symptoms, spoke with the psychiatrist, called me back, and passed along her assessment that I probably had the flu. But that wasn’t right, and an internet search on Seroquel withdrawal matched all the symptoms I had. I dug in my fingernails and held on to the toilet and my bed. The next day, sicker still, I called the psych nurse again, and he sent EMTs to my home who quickly transported me to the emergency room. Then I was rapidly taken up to ICU for two days of monitoring. The attending doctor wrote that I was in withdrawal from the sudden stop of the three meds and that this had caused all the symptoms, including temporary encephalopathy, explaining my confused, muddled thinking.
Back home, I was left to deal with the remaining withdrawal illness by myself, as I live alone. Friends I had had for years offered no assistance and my dad, way across the country, could only listen and encourage. The next week, I limped into the mental health center, the psych nurse measured my vital signs and weight (I’d lost 20 lbs.) and I saw the psychiatrist again. Still woozy, exhausted, I only said I no longer had two of the adverse effects from Seroquel (restless legs while sleeping and joint pain) and so she cold-stopped the meds treating those, Mirapex and Pristiq, which should also be titrated when discontinued.
My case manager, who I met with briefly days later, advised that requesting a different psychiatrist required that I try working out issues with the current one before a switch would be considered. That was the rule of the department overseeing the mental health center. So I stopped seeing the psychiatrist and filed a request with the human rights department, sending them documentation of the psychiatrist’s having cold stopped meds, the ICU doctor’s report that my illness was from withdrawal, and waited, sure that I’d made a good case for being reassigned. All of this I did while quite sick, struggling to get out for food, learning to sleep again amidst horrible nightmares, and on my own. And I waited. I waited through the center director investigating the psychiatrist’s actions and reporting back that she hadn’t stopped the meds; a psychiatrist at a psych unit had discontinued them in July. I waited while the board of the mental health system mailed me a letter summing up that I hadn’t handled meetings properly with the psychiatrist after drugs were stopped, thus my claims of rights violations were unsubstantiated.
So I waited and endured psychoactive symptoms of withdrawal, intense and psychotic manic states that prompted a therapist to send out the mobile crisis unit. They put me under an emergency custody order, police took me to an ER for labs necessary before detainment in a psych unit, and there I was placed under guard. I wanted to use my phone to call my dad. The guard said no, I no longer had any rights. I tried to get my phone and ended up handcuffed to the bed, injected with tranquilizers, then came to in a psych unit 30 miles away. The psychiatrist there ignored my ongoing withdrawal, had me injected with Haldol and Ativan for a few days, then sent me home.
And I waited still for a psychiatrist switch. With no prescriber, I was forced to stop taking naltrexone, then ran out of lithium too. Surviving day-to-day was hard, but I’d found the only help I got through withdrawal. I discovered others online in various stages of psych drug withdrawal and those people are my rock to this day. Not only did they give me suggestions for handling withdrawal, but they also comforted me, kept me company during dark nights of fear, pain, and uncertainty.
Even with some help from understanding people, withdrawal wore me down. The mental health services, the people there I’d previously relied on and trusted, glossed over my withdrawal struggles. Still having so many physical symptoms, and at this point feeling terribly invalidated, I drove to the ER, explaining to the intake tech that I might have a UTI, again, but said I also felt suicidal. The ER doctor ordered labs, wrote a prescription for an antibiotic because I did have a UTI, but there was no discussion of my suicidality. The nurse told me to go home. The burly, tattooed tech ordered me out of the ER. I yelled toward the ER nursing station, and as I passed the intake people, and as they watched me walk to my car, that I was going to kill myself. Nobody stopped me.
But I stopped in at the all-night grocery down the street and I bought a knife. This was not an attempt to get back at everyone in anger. I simply felt like I no longer existed. People around me acted as though I wasn’t even there.
Back home, I sat staring at the knife. Then I looked at my cat. “My only confirmation of existence is that this cat depends on me caring for her.” I repeated that in my head several times. Reluctantly, I dialed 911, deciding to give one last person a chance to hear me. Thankfully that operator did listen to me, all that I needed to say, and I began to feel validated, maybe even seen. I did land in a psych unit, again, and was injected with drugs to keep me manageable for staff, again, and released within a few days without mention of withdrawal problems, again.
I waited, then all the sudden my case manager called to say I’d been switched to a different psychiatrist. My appointment was scheduled for January 13, 2020. I held such faith that I’d have help with my continuing withdrawal problems. But that didn’t happen. This new psychiatrist called my withdrawal a resurfacing of my mental illness, known as discontinuation syndrome. She said my chemical imbalance necessitated starting lithium back up, and adding clozapine maybe, since IgA vasculitis ruled out using “all the good drugs.” I left her office deciding to leave the mental health center, and psychiatry, for good.
In the following months, as my body and mind cleared the drugs, the worst of the physical problems passed, and the psychoactive symptoms ceased, I noticed that I never really thought about self-harm any longer. Manic states failed to gather much steam, feeling down or sad didn’t open the door for depression to visit, spreading grey and heaviness into my world. My desire to make art, asleep all these years under the cover of numbness and turmoil, was awakened, brightening my days, providing a way to make sense of all these recent experiences.
I realized I know my own mind, my opinions, what I need, better than anyone. Confidence and self-esteem—which therapists tried drilling into me with coping skills, DBT, distraction and activity lists, and rating feelings while I was heavily poly-drugged—already lived within me, and I found them as I shook the dust off. It was appearing to me that much of my supposed mental illness had been set off and prolonged by the very psych medications meant to treat it.
So now, I come back around to the idea of me being out of control, of me needing medication and psych units and behavioral training to maintain any semblance of functioning. Psychiatric and mental health treatment I received from 2016-2019 was so often random, a reaction to a moment, a failure to discuss with me my actual experience and needs, invasive, coercive, lacking in humanity. It was as if mental health services had given me a car to drive, which various mechanics at different shops had then tinkered with—brakes unreliable, bugs in the electrical system, a different tire on each rim, unwieldy steering—then told me I should be able to take it on the road. Each time I careened into a ditch, nobody looked at the car, just at me, the driver, to assess what I’d done wrong.
I’ve been in and out of psychiatric care for longer than those three years. It’s been decades of having this and that medication, being urged to have ECT because I was treatment-resistant, being locked away. If any of these mental health professionals had bothered to unwind the trauma history, the causes of my anxiety, let my mind have the clarity to view it, give it place and context, I’d have come to mental healthiness long ago. Mental healthiness: this haven so precious to me now, free of mental health systems’ mechanisms and psychiatrists’ tampering.
