Breaking with Disorder: The Invisible Flames of Mental Illness Labels

The website of the American Psychiatric Association (APA) indicates that mental illness “is a medical condition, just like heart disease or diabetes.” The ubiquitous acceptance of this narrative has generated blockbuster profits for pharmaceutical companies, but has led entire populations of patients to become disempowered, self-loathing, and overmedicated. Patients have long been manipulated into accepting identities defined by ambiguous assessment criteria. Losing the ability to challenge their own treatment protocols, individuals remain imprisoned by false ideologies.

Trapped in a faulty treatment paradigm for decades, I began to critically examine how these labels had shaped my life.

As a child, at the start of ninth grade I found myself at the epicenter of rumors and bullying. I started to abandon all my efforts to fit in. I never told my teachers or my parents about the daily harassment. All the popular kids would hang out in the school lounge, which seemed unofficially always reserved for their group. I found myself attracted to friendships with individuals who were like-minded about not adhering to the stifling school rules. We’d frequently sneak off campus to walk to the mall or hide away in the woods. On a cold afternoon, a friend pulled out a pack of Newports and a lighter. I had no idea how to smoke a cigarette at 13 years old, but I was proud of my rebellious accomplishments, and apathetic about my academic ones. My window of opportunity to continue this behavior was closing, however. The class dean had set up a meeting with me. He wanted to discuss my academic performance.

I could already envision the tone set to this dreaded conversation as I saw my transcript lying neatly on the table in the dean’s office. I picked up the chair adjacent to him and moved it back about three spaces before placing it back down again. I wanted to give myself enough distance from this man who did not seem to have my best interests in mind. From the start, there were no niceties exchanged on his end as he quickly started reading out my grades to me. He began interrogating me as to why my grades were slipping. This appeared to be a full-fledged attack, and I started sobbing. Choking down tears, I mustered my reply, “I don’t know!” I stammered, “I just… I, I cannot handle the course load, I am not stupid, I just…….”

He found an opportunity to cut me off and interjected his own insights. “Rose, you seem really down, do you feel depressed?” he asked.

I turned my face away from him as I unsuccessfully wiped away free-flowing tears from my face.

“Well,” he continued, “It looks like I have struck a nerve.”

I felt horrified and my eyes started to dart toward the exit door. Despite my obvious state of despair, he pressed on with his agenda.

“I think you should meet with the school psychologist, Dr. O. How about I set up a meeting for you to talk with her next week?”

“NO!” I shouted back through my tears. “I am not seeing a psychologist. I am not talking to her, I refuse.”

I stood up and left his office, leaving a look of discontent on his face. Although he went against my wishes and still set up a meeting with Dr. O, I never showed up to the appointment. While I was suffering from mental anguish, I never experienced much desire or need to get help for this issue. I wanted to embrace all my emotions on my own, even the most painful ones.

I managed to get through my sophomore and junior years mostly unscathed, and even began to feel comfortable in my own skin. But toward the end of my junior year, I became painfully aware that my older friends would all be graduating and leaving for college that summer. There would be no one to have lunch with anymore. During my senior year, I would go to the dining hall during lunch hour and quickly make myself a sandwich at the salad bar, then eat half as I walked back to the main campus; the other half would get thrown into the trash along the way. I was painfully unaware that one event, on a particular evening, would soon dictate the course of my life for nearly the next two decades.

Nausea

I remember feelings of complete terror as my heart rate accelerated at unprecedented speeds. I looked down at the ground beneath me, which appeared to melt underneath my feet. The chain reaction of physiological effects within my body and mind were unstoppable. I was an outside observer to the whole process, and there was nothing I could do to stop the inevitable. I was having a panic attack.

I saw a psychiatrist who initially diagnosed me with panic disorder and prescribed Zoloft, which caused brain zaps, extreme nausea and cognitive impairment so severe that I could not respond to simple instructions (I detail these experiences in a previous story here). In a few months, I would subsequently be told that I had “Major Depressive Disorder,” a diagnosis that broke down my spirit even further. I cried my way through every session with my therapist, mostly after detailing my new pronounced states of depersonalization, physical pain, and complete hopelessness. When my one diagnosis had multiplied into two, I accepted my fate of being ill. I extrapolated these disorders further: I consciously identified myself as a damaged individual. This perceived state of being would haunt me over the next decade. I wanted to disappear. While the idea of dying started to feel like a wise and logical escape, these ideations also felt foreign and intrusive. I was horrified by the thoughts that my mind had now become capable of.

I continued to take my prescribed Klonopin for the next six months as my tolerance withdrawal to benzodiazepines became further pronounced. One evening, I decided to take a hot bath to try and calm down my physical pain. I couldn’t seem to sense how hot the water was, so I tested it with my foot under the running faucet. However, it was as if my internal barometer for temperature and pain had been switched off. The next morning, I sat silently in my senior-level philosophy class. My classmates appeared carefree and comfortable. I felt like my brain had been processed through a high-powered blender. I started to squirm at my desk as feelings of inner restlessness began to consume me. It was cumbersome to sit still, as I had developed a mild form of akathisia. I would identify small pockets of time during lectures where I could dash out of the classroom. I desperately needed to rid myself of the inevitable movement that I could no longer control.

Upon graduating, my philosophy teacher gifted me a copy of Nausea by Jean-Paul Sartre. I lay in bed at night, sincerely hoping that I would not make it to see the morning. I was not scared to die; I was scared to keep living. After the commencement ceremony, students in the graduating class left on beach trips for senior week. Meanwhile, I could barely hang on to the next moment. Feeling dizzy and disoriented after taking my prescribed Klonopin dose, I made my way to a relatable passage in the text:

“And I too wanted to be. That is all I wanted; and this is the last word. At the bottom of all these attempts which seemed without bounds, I find the same desire again: to drive existence out of me, to rid the passing moments of their fat, to twist them, dry them, purify myself, harden myself, to give back at last the sharp, precise sound of a saxophone note. That could even make an apologue: there was a poor man who got in the wrong world.”

Tic-Talk

After dropping out from my initial semester of coursework in the fall, I was excited to return to college in the spring semester as an ambitious biochemistry major. I thought I had achieved some stability from what I now know to be iatrogenic injury from benzodiazepines. I threw myself into my coursework, putting a lot of pressure on myself to succeed and not stopping to consider whether my newly injured nervous system could handle this level of stress.

I woke up early one morning in my dorm room, trying to gather my thoughts and get myself ready for my organic chemistry lecture. I washed my face, brushed my teeth, and frantically searched for my textbooks. I stopped suddenly and gasped for air as the left side of my head started to buzz, reminiscent of the brain zaps that had abated for several months now. I felt as though someone had turned the volume up from 3 to 100 in my head and my thoughts were too loud to bear. The left portion of my brain felt highly pressurized, and I was in a great deal of pain. The head pressure became so severe that I believed I was having a stroke. I began to quietly repeat out loud the thoughts that were repeating inside my head.

Despite my best efforts to suppress these vocalizations, my phonic tics would eventually erupt into full-blown klazomania (compulsive shouting). I realized that I needed a solid plan to make sure that no one would notice. When my symptoms escalated, I would go for a drive in my car and turn the radio on full blast. On the surface, I likely appeared to be singing along to the music, but I was desperately hanging on to reality as my brain was working completely against me. I was shouting my thoughts at full volume while trying to safely navigate traffic. I could not make sense of anything that was happening in those moments, and neither could any of my doctors. The only options I was ever presented with were more medication.

I maintained every effort to appear normal. I worked diligently to remain articulate during conversations with others. I committed to finishing my undergraduate degree, as well as applying to various graduate programs. Deep down, I was completely exhausted and overwhelmed, harboring intense feelings of both depersonalization and derealization. The heavy doses of trazodone and Klonopin caused a severe loss of inhibition and I felt a dangerous sense of apathy toward my well-being. I started drinking heavily to try and regain any sort of emotion. I was neither happy nor sad; I accepted my bleak existence in my heavily medicated state.

I would soon come to find that drinking only helped my symptoms temporarily. In my intoxicated state, I could sense a glass barrier between myself and the rest of the students. I felt vulnerable and isolated, an easy target for strangers who were eager to feign interest in my well-being. With multiple diagnoses and a stack of pills in my bedside drawer, I never developed any self-worth. The only identity I was presented with by each clinician was that of a sick individual.

I started staying up late at night in my dorm room, experiencing a sense of complete disconnection from myself and the world around me. I took a razor blade to my skin in a futile attempt to bring myself back into reality, rationalizing that if I saw my own blood, my brain might slowly form a connection back to my body. I had no such luck, and was left with the task of cleaning up my self-inflicted wound. I detailed all my actions to my psychologist, who judged me quite harshly. I decided not to mention any future incidents of self-injury to her. My psychiatrist increased my trazodone dose so high that my sleep began to resemble a medically induced coma. The medication had also started to dry out my throat; I would frequently need to spit out my water in the mornings, as the small amount of liquid would cause me to choke.

OCD & Me

I found myself slouched in an uncomfortable armchair across from a licensed therapist. His office was in an old and musty building adjacent to a private psychiatric hospital. I detailed all my symptoms to the best of my ability, and he confidently nodded his head as he scribbled away on his notepad. He handed me a short assessment titled “Y-BOCS” (Yale-Brown Obsessive Compulsive Scale). I started quickly filling up the little bubbles, taking note of how vague and repetitive each question was. I felt myself growing angry; this exercise was cutting into our therapy session. I felt a sense of distress as I handed the assessment back over to him, completely unprepared for what would come next. The therapist scored my answer sheet and nonchalantly announced that I had scored moderate-severe for obsessive-compulsive disorder (OCD).

I felt disappointment and anguish as I settled into this new label. My self-reflection was interrupted as the therapist started to lecture me about various methods of treatment, namely exposure response prevention (ERP). I decided to attend a three-day International OCD Federation conference that summer, to learn more about my condition. I met with leading professionals and learned about different avenues for treatment. I noticed that every professional portrayed my illness as a chronic condition. My heart sank. If this were indeed true, could I ever go on to lead a normal life?

I began to attend therapy at a local treatment center, one that was highly specialized for OCD. During group sessions, I looked around the room at all the other patients who shared my diagnosis. I wanted to identify someone who was getting better with the treatment protocol, but I could not. I made sure to ask the other group members questions about the medications they were taking; I still had hope that I could somehow get to the bottom of a “cure.” Many individuals told me they believed that the medication was helping them. Upon further questioning, I learned that they were all experiencing significant side effects. Overall, they did not feel that their baseline symptoms had improved much.

A psychologist led the group session every week, offering professional conjectures based on experiences shared by the patients. On a particular night, one young woman shared that she felt nervous every time her husband was out late with his friends. She felt consumed with worry that he might drink too much and get into a car accident. This seemed like a perfectly reasonable concern to me. However, the psychologist provided a detailed explanation of how her thought process was flawed due to her pathology. I began internally questioning why these seemingly normal attitudes and behaviors were indicative of illness. But I was still heavily indoctrinated into the concept that I was mentally ill.

I could feel integral layers of my existence evaporating during each therapy session. I was internally screaming into a void that felt boundless. My psychologist encouraged me to keep engaging in the exposure response prevention exercises during my free time. I told her that the exercises made me feel disassociated, terrified, and hopeless. Nevertheless, she insisted that this was the gold standard of treatment. I felt infantilized. She stated that if I did not continue this treatment, I could never expect to recover. The power dynamic was locked: I was the patient with intrusive thoughts, and she was the expert psychologist. Any input that I provided would always be deemed erroneous by her standards.

After much research, I found a top-rated intensive outpatient program for OCD in Houston, Texas. I felt naively confident that this program would work. The flight to Houston was a bit nerve-wracking, but I soon settled into my new environment upon arrival. The next morning, I made my way into the treatment clinic. The clinic was located inside of a large Mediterranean-style house, with a handful of bedrooms for patients who chose to reside on-site during treatment. After completing my check-in, I was greeted by an intimate group of patients and counselors. Every morning we were asked how willing we were to “lean in to our OCD” and provide a score from 1-10. Next, we would meet as a group in a small classroom. One of the staff psychologists would lead a group exercise, ranging from coping techniques to group discussions of various symptoms. From there, we were free to complete our exposure response prevention exercises on our own, or any other task that was deemed appropriate for our healing.

At night, I would flip through the seemingly endless material on my condition that I received each day. This material seemed very clinical and lacked any relatable perspectives on suffering. I stared at the monopoly board of symptoms on my binder, unsure of how I felt about my symptoms being reduced to a children’s game. This whole treatment modality felt bizarre, and I started feeling more hopeless. I took my prescribed Ambien every night to go to sleep. I questioned whether I should be taking it, but I did as I was instructed.

The next morning, I waited outside my hotel for my Uber driver to arrive. With past drivers, I would typically lie if they asked me questions about my destination—since the clinic did not have any obvious identifying markers in the neighborhood, I usually said I was going to a friend’s house. My driver pulled up and I anxiously took a seat in the back of the car. I hated being driven by strangers and it filled me with dread. Luckily, this driver seemed friendly, and he quickly engaged me in lighthearted conversation. He inquired where I was headed to and I started to gulp down my hesitation. I bravely responded to his question: “I am going to a treatment program for obsessive-compulsive disorder. I never had these symptoms before I started psychiatric medication.”

To my surprise, he did not seem fazed. His voice filled with sadness as he told me that he had taken Effexor in the past for depression. I caught his reflection in the rearview mirror as he became more emotional. His next sentence was haunting: “This medication almost cost me my life.”

The air grew silent, aside from my nervous breathing and the car horns blaring around us. I asked him how long it had taken him to regain a sense of normalcy. After breathing a heavy sigh, he answered, “I really don’t know. Rose, it seemed like an eternity… I felt horrible for at least several years. I also had these debilitating headaches that seemed to never end. I am so thankful that I don’t get them anymore.” He then patiently proceeded to give me suggestions on how to plan a slow taper and mentioned a few supplements that eased his symptoms. This brief encounter would serve as the most important experience that I had during my stay in Houston. As he made the last turn into the clinic, I felt a sense of sadness that our conversation was ending. I thanked him for sharing his story with me and made my way into my morning session. I learned more from a stranger in ten minutes than I did in three weeks at a top-rated OCD center.

I completed the usual morning exercises with the group, feeling foggy from the Ambien I had taken the night before. I was paired with a psychology intern, and mentioned to her that I was in severe pain. She looked puzzled, so I asked her if she knew what brain zaps were. I tried to explain the condition to her but she appeared largely disinterested. It was clear that no one believed me. Eventually my pain let up and I was paired with a different intern later in the day; I felt dismayed by the incessant shuffling between different practitioners. The intern asked me to write a letter for my exposure prevention response exercise, detailing what I thought would happen if my obsessive thoughts never went away. Tears poured down my face as I detailed my every worst fear, including never getting better and continuing to live my life in fear and isolation. She did not comfort me even once but did praise me for getting through the exercise.

I felt completely traumatized by the whole event, and I decided to quit the program prematurely. If medication and therapy were so effective, why did I only feel worse? After over a decade of receiving multiple diagnoses, I felt broken. I started to abandon my identity of a mentally ill patient, a label that I had first been presented with as a teenager.

The End of a Diagnostic Area: Breaking with Disorder

As an undergraduate psychology major, most of my coursework centered upon the concept that continued states of mental anguish were all diagnosable conditions of mental illness. “Depression is the common cold of psychiatry. Schizophrenia is the cancer,” one professor would continuously assert during lectures on psychopathology. After my personal experience in the mental health system, I feel vastly betrayed by this portrayal of human suffering. With each subsequent DSM publication, reductionist labels have now become applicable to every facet of daily existence. The definitions for “abnormal” behavior have navigated both patients and practitioners away from practical solutions. Instead, constructs of conventional mental health treatment have steered into a dangerous territory of exploitative labeling.

As a highly sensitive individual, it was difficult to effectively process my environment at an early age, and at times this caused me states of extreme distress and sadness. However, I also feel that I could have been able to handle these reactions with the proper outlets of support. The autonomy over my own identify was stolen from me within the fleeting moments of receiving my first diagnostic label. After my initial panic attack, I questioned my existence and felt disassociated from my identity. To qualify this type of thinking as a disorder is to fundamentally rid society of any deviation from what is considered “normal.” I do not believe that natural reactions to grief, trauma, and stress are indications of illness. Furthermore, psychosis could better be defined as a psychospiritual struggle that requires compassion rather than involuntary punishment. Eradicating an individual’s right to make decisions for their own recovery is inhumane. I am just one example of an individual who has been largely failed by the conventional mental health system. The systemic failure to provide a more sound and humanistic approach to suffering has led to deplorable outcomes in the previous decades for millions across the globe.

In 2020, I was extremely fortunate to see a physician who diagnosed me with an iatrogenic injury from benzodiazepines. I had endured virtually two decades with dozens of clinicians insisting that psychotropics played no role in my continued list of unexplained health conditions. This was the first time I had encountered a psychiatrist who did not provide me with a diagnostic code for mental illness, but instead, a clear explanation that I had been harmed by psychotropic drugs.

An onslaught of questions started to flood through my mind. Who would I have been if I had never been diagnosed? What if I had never taken psychiatric drugs? My mind started to unravel at all the possibilities and my identity felt at odds with this new discovery. How was I supposed to move forward with this knowledge? I scoured multiple support group forums in the layperson community to develop a medication taper plan. This continues to be a long and arduous process, but I feel determined to become unmedicated. I am still in the process of grieving for all the years I spent suffering, adhering to the false paradigm of disorder. Labels that perpetuated a construct of falsehoods that I would never be successful. Labels that led me to engage in self-destructive behaviors. These labels left me docile to a broken mental health system—a carceral system that viewed me interchangeably as a patient or an object, but never a person.

A prominent Scottish psychiatrist, R.D. Laing, revolutionized psychiatry with his views on mental illness. While Laing never denied the existence of mental illness, he held radical views that were in opposition to his contemporaries. Laing insisted that mental illness could be a transformative episode whereby the process of undergoing mental distress was compared to a shamanic journey. The patient, or “traveler,” could return from this journey with relevant insights, and may have become a wiser and more grounded individual as a result. I am in the process of releasing myself from all the shame, the guilt, and the fear that I have acquired throughout my experiences as a patient. I am confident with my decision to break with my diagnoses. While I believe that a diagnostic label may provide initial relief to the sufferer, there are undoubtedly severe consequences that may follow. The invisible flames of mental illness labels no longer dictate the course of my life. I have ultimately chosen to break with disorder.