First Person

Unheard Minds: Neglecting the Mad

Group Therapy

25/06/2024

In 2012, Helene* went to a psychiatric hospital for the first time in Copenhagen, while she was finishing her studies in philosophy in Denmark. Her thesis focused on psychosis through the lens of the humanities and gave her the opportunity to spend six months immersed with doctors and patients. This experience was truly transformative and sparked a conviction: we do not understand the lived experiences of people with these disorders, and we do not make enough effort to understand them.

From a report by Eva Tapiero

“On my first day, I’m greeted by the head psychiatrist. She expresses interest in the stance I’ve taken with my dissertation. From her standpoint, exploring mental disorders through philosophy is a meaningful way to view mental disorders and it helps counteract what she describes as an unsympathetic shift that psychiatry has taken in recent decades. 

The part of the hospital where I’m conducting my internship is called a closed unit. Here, the patients are not allowed to move about freely. All the doors are locked and many of the patients didn’t come here of their own free will. When you enter, it feels more like a prison than a hospital. The common areas include a TV room, a dining room, and a lounge of sorts. A long, austere corridor leads to the bedrooms. Each room is furnished sparingly, without decorations. The design attempts to reduce the possibility of potentially dangerous objects causing escapes or suicides. They did build a small space for smoking outside, which is also padlocked. A courtyard encircles it, a reminder that there is life outside these walls. A giant fence engulfs everything. It is here that the patients spend weeks, months, sometimes even years finding a way to return to the outside world. Setting my textbooks aside, I discover first-hand what it’s like to be a schizophrenic patient in a psychiatric hospital.  

If we pay attention to what these patients have to say, then it’s impossible not to conclude that what they are describing is indeed their reality. How can we deny it?

Anderssein 

At an early thesis interview, I meet with an 18-year-old patient who describes an impression that has been steadily growing within her for years, an impression that has grown stronger in the past year. She feels that she exists in two different realities. “When you watch a movie and the cameras focus on someone’s eyes, that’s how I feel,” she tells me. “You see everything that’s going on, but you don’t feel like you’re actually there. Your life is like a movie unfolding in front of you, and you’re just a spectator. I can’t really be part of it, but at the same time I can’t not be, because obviously I’m there. My body and my environment aren’t real. My mind is the only thing that exists.” Then, in a different interview, this idea came to her as a separate voice: “The other people are in one world, and she is in the other world” (the “she” of course referring to the patient herself). She perceives this voice not as her own, but as the manifestation of a “contact” that exists in a separate dimension of reality. 

Similarly, another patient tells me: “Sometimes, I wonder if other people truly exist, or if it’s just me who exists, and if everything around me is fake. I literally feel like the world orbits around me. For example, sometimes I feel like the color blue. When I look around me, without being able to really explain it, everything I see is blue. It’s as if I’m deeply connected to the earth. There is something controlling it, something that decides that I feel a certain way.”

These patients, all diagnosed with schizophrenia, reveal a deep conviction of otherness. When I discuss this with other people, I realize there can be some confusion about this disconnect. Of course, everyone feels different at times. Each person is unique and occasionally experiences this sense of singularity strongly at certain moments in their life.

This perception, made that much more intense in that it is a collective sensation, is a term called anderssein. This term is translated from German and literally means “to be other.” This notion helps us better understand the state of solitude and the insurmountable distance that can exist between these patients and the rest of the world; between them and “the others.” 

Anderssein, a subtle yet critical concept for helping us understand these patients, is often overlooked in favor of focusing on more apparent psychotic symptoms, such as hallucinations and delusions.

This brings us back to the fundamental question: what occurs prior to the formation of a psychotic world? Patients often described as having stemmed from that more subtle feeling of being different and existing outside the common world. The emergence of psychosis often corresponds to a gradual and profound disruption of a person’s existential foundation, akin to the concept of anderssein (being “other”).

If we pay attention to what these patients have to say, then it’s impossible not to conclude that what they are describing is indeed their reality. How can we deny it? But that would require genuine listening that doesn’t impose an agenda. From the patient’s perspective, what they’re describing is the way they perceive and inhabit the world. It’s not an illness that needs to be eliminated so they can be considered a “healthy” individual. Yet traditional psychiatry views their version of reality as an “outer reality,” or in other words, a pure negation of what is normal, logical or rational. I made this remark during my studies in Denmark, but it’s a more general observation that, with a few rare exceptions, applies to France and the rest of the Western world. For proof, one needs only consult the two leading psychiatric manuals in existence: neither one gives an actual definition of psychosis.  

Learning to listen

In the documentary “Averroès & Rosa Parks” directed by Nicolas Philibert, we witness the case of a person in a psychotic state who is doing very poorly. His doctor repeatedly asks him, “How do you envision your future?” The patient doesn’t seem particularly interested in the question. Instead, he talks about his deceased grandfather whom he had met in the ward. The doctor tells him that people can’t come back from the dead. Another staff member chimes in, saying, “We know he’s in your reality, but it’s not reality.” The patient’s reaction demonstrates the strong intuition of schizophrenics: “Why are you bothering me with your reality, then?”

So, why does psychiatry reduce the schizophrenic experience to a loss of reality, and to what end? By eluding the patient’s accounts, the doctor imposes his or her way of thinking as the only legitimate one. But who has the power to define reality? Psychiatry, in its approach to schizophrenia, has assumed this right. My thesis thus presents the idea that “our” reality is counter-productive and causes the schizophrenic patients to suffer in that it strives to alienate the patient from the part of his or her self that is familiar and often a source of reassurance. It is at this point that turning to philosophy can be immensely helpful in illuminating the concept.

My thesis is based on an approach called Phenomenological Psychopathology (PP). I am well aware that these terms are complex, which is often why people tend to overlook them. But these terms, challenging as they may be to retain, actually get at basic notions that govern our daily lives. To put it in simpler terms, phenomenology is a philosophical movement that adheres to a faithful description of lived experience, completely removed from abstract theories. Psychiatrist and philosopher Karl Jaspers taps into phenomenology in psychiatry as a way of exploring and describing his patients’ experiences, which are (by definition) unique and subjective. In one of his publications, he points out that the focus should be on “the sick person as a whole.”

I have often found that psychiatrists don’t take the whole picture into account and don’t tap into this anderssein, instead ask the patient questions like, “Do you hear voices? Do you have allergies? Let’s do a blood test, then.” In short, these types of questionnaires trigger self harm in their refusal to explore the totality of the patient’s experience. 

So if a diagnosis is based exclusively on a list of symptoms that imply the patient is living outside of reality, it’s hardly surprising that the treatment proposed focuses on these symptoms. Classic treatments attempt to eliminate psychotic symptoms by any means possible (especially with medication). The idea is that once the symptoms disappear, the patient will become a healthy, full-functioning individual without mental troubles. It’s a nice idea in theory, but is devastating in practice. 

What causes the most suffering for these patients is not the voices and hallucinations that make them feel detached from common reality, but rather their sense of isolation

The Realness of Unreality

In all my interactions with individuals with schizophrenia, I have found—contrary to popular belief—that they are fully present and have heightened awareness, able to perceive the energy and details of their surroundings. They also have complex and hidden inner worlds.

One particular patient stood out to me during the time of my internship. I would often find her in the smoking area. She was in her late thirties and already had a long history of hospitalizations. It would actually be fair to say that since her teenage years, she’d spent more time in the hospital than out of it. I had many fascinating and deep discussions with her, particularly about politics, literature and philosophy. She struck me as a brilliant person and I couldn’t help but think at the time, “What is she doing here? Why has she spent so much of her life in a hospital?” One particular day, she took a drag of her cigarette as she told me (in a tone of total confidence), “I’m in touch with the center of the Earth.” This “center,” she went on to describe, resembles our world in nearly every way; a near-carbon-copy, but with one major difference: this other planet has developed highly complex technology which its inhabitants decided they wanted to monitor. She went into great detail about this other world, explaining that she had been chosen (for a reason unbeknownst to her) to be implanted with a technological device intended for surveillance. The device enabled her to communicate with creatures at the center of the Earth through nine different voices that came to her telepathically. She had been communicating with the voices for over a decade. 

This woman’s psychiatrist diagnosed her with psychosis based on her display of the “classic” symptoms of hearing voices, hallucinating and having “bizarre illusions” (the idea of another dimension, used when discussing beliefs based in unrealistic or implausible content). Her psychiatrist’s diagnosis was that she was ill to the point of having no awareness of her illness, which is why she needs to be hospitalized. Finally, after a few weeks, members of the hospital staff agreed that she’d finally come to her senses. I got to speak to her on the day the diagnosis was made, in the habitual smoking zone. Now, just picture it: this smoking area had no chairs and no couch, simply a few square meters encased within glass walls. She told me in hushed tones that she wasn’t the stupid one. Actually, the ones who didn’t know about her planet’s brilliant technological developments were actually the psychiatrists, who had all been kept in the dark about it. 

Even if a patient acknowledges having psychosis, the conviction of their “psychotic reality” often goes untreated. The patient’s reality is so significant and pervasive that it’s impossible to completely detach from it or negate its existence without further destabilizing them. This would leave them on unstable ground in a world they don’t consider their own. Moreover, even when patients are willing to address their psychotic symptoms, the effectiveness of traditional treatments remains debatable.

Another patient had checked himself into the hospital in order to silence the voices that were torturing and terrifying him. Afraid of hurting others, this man in his thirties had lived a “normal” life before, with a stable career, a house and a dog. Then, voices in his head began to comment on his every move, saying things like, “Oh, he’s talking to that person,” “Now, he’s smoking,” or “Now, he’s opening the door.” He had no respite, enduring this running commentary 24 hours a day. The voices also gave him orders, which he demonstrated by waving his hands in the air. After several months of hospitalization and treatments, I asked him shortly before his discharge how he was doing. He replied that he felt much better. When I asked if the voices had stopped, he said, “They’re still there, but they’re much quieter now.” He also confided that the medication, with its common side effect of fatigue, made it harder for him to follow the voices’ orders. Could we really consider this man healed?

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After my internship, I began working in a public psychiatric hospital and encountered a patient who had cut his arm with a sharp object. He had no intention of hurting himself or of ending his life. Instead, this act was a test of his own existence. He had asked himself, “Where do I come from? Do I too have blood running through my veins?” He genuinely, or rather sincerely, asked himself these questions, for a deep-rooted certainty had taken hold of him: he was not human.

For twelve years now, I have been in close proximity with, listening to, and reading the testimonies of schizophrenic patients. I have come to the conviction that what causes the most suffering for these patients is not the voices and hallucinations that make them feel detached from common reality, but rather their sense of isolation. What exacerbates this isolation and anderssein is that the medical community chooses not to listen to them, demanding that they conform to our reality at the expense of theirs which they experience at a given moment. It is the enduring and historical segregation of individuals deemed “mad,” and the exclusion of their narratives, that counteracts the healing process.

I strongly advocate that the diagnosis of psychosis not solely rely on a checklist of symptoms corresponding to brain dysfunction—a simplistic neuroscientific approach that disregards the broader consequences for the patient. We must understand the important transformation that psychosis entails: a transformation of the entire being, their perception of the world, and of others. Instead of cutting them off from their worlds, let’s strive to find a way to bring them back into a shared reality with the goal of them finally finding the sensation of belonging they so desperately need. While communicating with these patients may pose challenges, it’s not about further excluding them; instead, clinicians should find ways to help them reintegrate, to break the ice without necessarily dismantling their psychotic world. Let’s listen to the mad.”

*All testimonies above protect the identity of the patients. Most of these testimonies have been published in scientific revues.

___

*Helene B. Stephensen is a researcher in philosophy and psychiatry. Her work focuses on the perception of reality in people diagnosed with schizophrenia from a philosophical/phenomenological perspective. In 2024, she received her doctorate in philosophy from the University of Copenhagen. She is also a graduate of the Institute of Psychotherapy affiliated to the University of Copenhagen (ISPS). Since 2022, she has been based in France as part of an academic partnership with the École Normale Supérieure (Archives Husserl). In August 2024, she will continue her research as a post-doctoral fellow.

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