Guest Post: A Psychiatric Survivor Comes to a Place of Understanding
Lisa Wallace on why she left psychiatric care and why she may return one day
This is a guest post by Lisa Wallace, who explores critical perspectives on psychiatry through art and writing, taking inspiration from her encounters with the mental healthcare system, portraying both past experiences and the potential for improved mental health services.
Perhaps you are a psychiatrist, psychologist, therapist, or social worker seeing patients bound up in mental distress or afflicted with disorders beyond their control. Or maybe you are a patient, seeking respite from, or resolution to, problems in life that preclude you from greater serenity and fullness in living. The clinical journey demands trust that often isn’t established, leading to increased turmoil, persistence of the problems for which care was sought, development of new problems, and pessimism with regards to the possibility of recovery. Clinicians may view such outcomes as failure, prompting assertions that the patients didn’t try, comply, or respond to treatment. These patients may feel disregarded, more hurt than helped. As a longtime psychiatric patient, now outside of active treatment, I admit to much despair. I imagined myself remaining in a state of rage based on my experiences, however, I can’t condemn psychiatric and psychological practices in their entirety as I’ve seen and met clinicians with great compassion who connect with patients and enable them to make positive changes. They also hold awareness of negative treatment aspects and desire better, acknowledging so as adamantly as some of the most disillusioned former patients. My views have evolved, a difficult process, through personal exploration and education, but the most important element has been mental health professionals willing to hear me out; not necessarily agreeing with me, but able to consider my point of view. In this post I will provide a window into aspects of the disastrous treatment I have endured and my process of finding reasons to contemplate returning to psychiatric care.
As hard as treatment mismanagement and abuses might be to take in, it’s vital to know some parts of my story. They are key to understanding how my reconciliation, to extend myself in faith towards mental health care professionals after such a past, is astounding. My process illustrates one way forward in changing attitudes, not just in patients who criticize, but in those who they criticize.
Artwork: “Psychiatric Survivor” by Lisa Wallace
During my 4 decades of psychiatric treatment, I have had 25 or more drugs tried on me, and during my last year of treatment I was on lithium, gabapentin, pramipexole, desvenlafaxine, quetiapine, benztropine, Vivitrol injections, and oral naltrexone. Honestly, I don’t know if it was confusion on the part of my psychiatrist, but she stopped quetiapine, gabapentin, and benztropine abruptly without taper or discussion of withdrawal problems. When I became very sick within a few days, I called and she relayed through a medication nurse that I must have the flu, but I didn’t, and ended up in the emergency room and then the intensive care unit for observation. Her answer to this 2 weeks later was to discontinue pramipexole and desvenlafaxine cold. The answer from the Human Resources department regarding my formal complaint about the psychiatrist’s actions was that she hadn’t stopped the quetiapine, and they only addressed the quetiapine, adding that I’d handled medication check-in sessions poorly in the past. At that point, I had filed a grievance solely because I wanted my care to be switched to a different psychiatrist at the mental health center, the only place I could afford services, or even be accepted because of my past, my self-harm history and over 50 psychiatric hospitalizations (most of them involuntary). Because of my diagnoses of bipolar disorder and borderline personality disorder, I was medicated and recommended into dialectical behavior therapy (DBT). I questioned and challenged the DBT I was receiving, and so I was removed from that also and left with meds and monthly psychiatrist and case manager check-ins. Mental health treatment rendered me powerless.
At this point, let me interject with a description of the involuntary hospitalization procedure, summarizing many I have faced in a composite version. Temporary detention would be ordered if a clinician deemed me in danger of harming myself. Typically, the police would arrive at my apartment. After opening the door to loud knocking, I would be instructed to move back in as 4 or 5 police officers would enter. They would search me, handcuff me, and transport me in the back of a cruiser. At the emergency room, staff would barely speak to me, ordering that I remove my clothing and change into a gown. I would have to provide a urine sample, then have my blood drawn for tests. Guards would appear, locking up all my personal possessions, including my phone. A guard would remain, eyes on me the entire time I waited, hour after hour, while a psychiatric bed was located. (Sometimes bad acts occurred in that closed off room. One guard repeatedly touched me, in private and inappropriate places. Another time, a guard handcuffed me to the bed rails.) Staff would disregard any complaints I raised, and choose to inject me with Ativan, a sedative, to quiet me. By the time I’d arrive at a psychiatric unit, I would be trying to decompress from that level of traumatization before I could begin dealing with the psychiatric unit, itself an abusive environment, in its best form infantilizing, an artificial world of people locked into a sparse, chaotic setting.
… the psychiatric unit, itself an abusive environment, in its best form infantilizing, an artificial world of people locked into a sparse, chaotic setting.
Also, I need to clarify here why I found DBT inappropriate and bristled at attempts to harness me into those treatment groups. I knew I had emotional disturbances, long held, fearful to me, that I’d distract from with self-constructed presentations, failing to find a therapist who provided enough safety and intuition to break down the barriers. The message I received from DBT was that I lacked the capability to process feelings, that I must be taught tools and skills, when in fact I had been regulating my emotion and tolerating distress innately, earning a fine arts degree and holding jobs, budgeting money, all the while surviving harrowing admissions to psychiatric units without help or recognition of circumstances I had overcome. I employed strategies to cope in the face of lingering stings of cruelty jolting my mind like a blinding white light. Classes in a methodology about how to tuck away emotions were counterintuitive to my desperate need to just release pent-up feelings.
Let’s return to where I was: after my psychiatric medication had been stopped, I finally persuaded the higher ups at the community services board, administrators of the mental health center, to let me see a different psychiatrist. It took 4 months. I had no prescriber during that time and had been forced to quickly stop lithium, Vivitrol injections, and oral naltrexone. I was physically ill, had lost 30 lbs. rapidly, and whirled about in manias so intense that I was put in psychiatric units twice. These admissions were brief because the inpatient psychiatrists had no answers, indeed seemed puzzled, over what to do with withdrawal-induced psychotic mania. By the time I had my appointment with a new psychiatrist, I had connected on Twitter with others tapering off psychiatric meds or those who’d been through withdrawal themselves, and had learned about the withdrawal syndromes and had found support from them. I desired further support, from a psychiatrist, in both handling ongoing withdrawal and the appropriateness of any further medication treatment. So, when the new psychiatrist rattled off that my withdrawal issues weren’t withdrawal issues, they were “discontinuation syndrome,” that I had a “chemical imbalance,” and what a shame that I was now unable to take so many psychiatric drugs since certain ones set off terrible IgA vasculitis rashes, not only was I appalled and insulted, but also crestfallen. My searches for help were only producing further resistance to my inclusion in treatment decisions that directly impacted my body.
Psychotropics had indeed affected my health adversely. While I was on them, my weight had increased 80 lbs., I would fall asleep during the day, and would wake up at night to eat uncontrollably, in a trance. I had wisdom teeth extracted, likely due to dental decay accelerated by constant dry mouth. Abilify, prescribed at one time, caused tiny blood vessels to burst under my skin visible as red speckles, which I asked a dermatologist to investigate. She biopsied a patch, sent it for microscopic examination, and the determination was IgA vasculitis. Later, Vraylar set off a more noticeable profusion of itchy blotches, and then months later Cymbalta induced a frightening rash over much of my body, tormenting me with itchy spots, frightening red globs that darkened into purple scabs. The dermatologist determined that similar chemical bonds in all 3 drugs were at the root of the problem. Now I have the potential for future kidney damage inside my body. And, tragically, despite all the drug trials and experimentation and combinations of drugs used simultaneously, self-harm urges ramped up rather than calm down from any treatment given at the mental health center or inpatient units during all those years.
One might wonder why I would ever consider going back for more psychiatric treatment, anywhere, from anyone, at any time in the future.
As I struggled with recovery, alone, learning to sleep again after years and years of medicated sleep on quetiapine, and through hours in a dental chair having cavities filled, and through kidney stones and removal and the pain of a stent, I swore I’d never go back to mental health care. I was so mad, and I was socially isolated, both due to recovery from medication withdrawal and from the COVID-19 pandemic. I found that joining in with other self-described psychiatric survivors online in criticizing psychiatric treatment and accusingly interrogating psychiatric professionals on Twitter every time they tweeted anything was some form of relief from my pain.
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At the same time, my mind began clearing, a fog lifting that, when on meds, obscured my interest in art, writing, or much of my creativity. Picking up drawing, painting, and reworking past pieces on the computer, as well as typing out what had happened to me during all the years I had been on treatment, from my teenage to mid-50’s, began to help me make sense and move forward. Bitterness eased, bit by bit.
During the first year of the pandemic lockdown, my sister died of a sudden heart attack, and 2 days later, my stepsister’s mother also suffered a fatal heart attack. Then, several months later, my cat, who’d been with me through so much, developed a fast-moving cancer and I had her euthanized. These back-to-back crises were too much, and I couldn’t handle them alone. Again, I ended up at a psychiatric unit, but something happened that I didn’t expect. A young psychiatrist saw me there, and he talked to me for a solid hour, getting to know me and discovering what I had going on and what I wanted. If he practiced outside of the hospital, I’d be booking appointments, but he doesn’t. The point is, he inspired hope in me. Not every psychiatrist is brisk, only looking at previous medical records, diagnoses, and opinions of others to insist that I need to be on this drug, or this one, or that I don’t realize the severity of mental illness swirling around my very being.
Back home, I continued spouting my discontent with much of my psychiatric treatment, but I also began opening myself to the other side, where people do find relief from depression or psychotic disorganization or whatever is making living so hard for them. I pushed myself, reading articles and blogs. I found YouTube videos of psychiatric clinicians I had deemed distasteful presenting their research or views or making presentations, watching them as judgement-free as I could. Occasionally, I’d be viewing a documentary, and, to my surprise, there was one of those pesky Twitter psychiatric people in action, real footage of them treating people, and I’d see the care and the results and the complexity of treating people combined with trust in self as a clinician. I privately messaged one these psychiatrists to apologize for any past disparaging remarks I’d made and to note that I’d seen his competence and it matters to me, if not to him. As I became more thoughtful, I gained more respect from some social media psychiatrists and psychologists, leading to meaningful exchanges. Recently, a psychiatrist started a podcast discourse with clinicians that is comfortable, genuine, and presents doctors as fully dimensional people. My search into facets of psychiatric clinicians and treatments softened my hard edges, taming my inner dark monster that had lashed out at anyone claiming psychological training or expertise.
My search into facets of psychiatric clinicians and treatments softened my hard edges, taming my inner dark monster that had lashed out at anyone claiming psychological training or expertise.
As this change was happening, I kept on with my art and writing, expanding my tweet writing into blog posts. My goal, whether intended or not, was to figure out independently all the layers of issues that had followed me for years. I mulled over what had occurred with psychiatric treatment that led me so far astray of any semblance of resolve. The process resulted in many insights, helpful and stabilizing. But the process is not complete. Not that I’m expecting to be “healed,” but it’s more like I’m missing the component of sharing with someone trained to confirm, make further connections, and keep me feeling safe as I delve further in, especially as I take responsibility for myself. I have come to accept my bipolar disorder diagnosis, and so what if I do need medications? I maintain stability in my very controlled, isolated environment, having very little contact with “in real life” people, but what about when I emerge back into the world? I must ask myself these questions.
With some trepidation, I scanned internet profiles of psychotherapists. This felt overwhelming, sorting out who might understand my background and current situation. Then I wondered about which ones might take Medicare and what I might need to pay out-of-pocket. Most offer only teletherapy, with the concerns of COVID transmission, good for me in one way as I’m still often exhausted, but not as good as in-person contact. In confusion, I called a relative who practices psychotherapy. She suggested ways of approaching all the choices, key words to notice, and other sage advice. For instance, she believes I should keep my contentious past with psychiatric care in the background initially, concentrating instead on my current problems.
I haven’t committed to return to psychiatric treatment. Clearly, that’s a thorny issue for me. But I’m open to the possibility now because I know psychiatrists and psychotherapists who hold competence in understanding the complexity of people while realizing and acknowledging the myriad problems in psychiatric care. In 3 years of increasing my own awareness, I’ve discovered this to be true. I won’t abandon advocacy in improving treatment conditions for all patients, nor will I turn away from the complaints and cries from patients hurt and lost within treatment settings. However, I am on a path of greater faith that many other, but not nearly enough, mental healthcare clinicians also walk. We need kindness to overcome the encapsulation of health care that has resulted from bureaucratic and administrative constraints, creating a landscape unfriendly to partnering with patients in safe, consistent interactions. Yet, some clinicians navigate time limits, bleak hospital environments, and disillusioned patients with compassion and optimism. It is such clinicians who give me hope and motivation to look once more.