Helene Speyer, MD, PhD is a consultant psychiatrist and associate professor at Department of Medicine, University of Copenhagen, Denmark. Her research focus on shared decision making, antipsychotic medication and dose reduction. She actively uses her lived experience to develop the conceptual foundation of mental health and serves on the editorial boards of several journals.
For many years, I kept my own history as a patient a closely held secret, fearing that my colleagues would question my work as a psychiatrist if they knew. However, with the rise of valuing co-production between people with lived and professional expertise, I have come to think differently. Today, I deeply appreciate the value of having “been there.” I now see my perspective as a form of microscale co-production within myself, where my professional expertise and lived experiences have clashed and forced me to reconsider my basic assumptions, resulting in a fuller and richer approach to mental health problems.
The current trend of including lived experience in knowledge production has many possible epistemic goals, ranging from identifying blind spots in the current system to profound co-creation where different perspectives challenge each other's philosophical assumptions, ideologies, and power dynamics. Theoretically, co-production in mental health aims to open up what Homi Bhabha has called a “Third Space”—a hybrid position that enables “a new area of negotiation of meaning and representation,” allowing other positions to emerge. However, it is my understanding that this third space is rarely opened due to barriers in the meeting between experts from the professional and lived worlds, where the former tends to position themselves as epistemically authoritative, leaving the latter as symbolically present, to “tick the box” and be politically correct.
My history is long and messy, and I will provide only three small glimpses onto events that have been significant for my thinking. My first encounter with psychiatry happened when I was 13 years old. I grew up in Norway, in a warm and loving family, with everything a child could ask for. But something happened inside me the summer I turned 13. I went into the summer holiday full of dreams and zest for life, but one afternoon, while lying in a hammock, a darkness grew inside me. Anxiety made me freeze, and within weeks, I stopped going out, seeing friends, and even leaving the house filled me with fear. I developed strange thoughts about other people wanting to harm me. My increasingly desperate parents tried to convince me I was wrong, but I didn’t feel I was out of touch with reality. Rather, I felt sorry for them for not realizing we were approaching an unnamed disaster. They eventually convinced me to see a psychiatrist, which I initially refused, as I did not feel disordered at all. Accepting to see him once, I was taken by surprise. He was so warm and calm, and surprisingly uninterested in my weird and painful ideas. Rather, he talked with me about life and gently guided me back into normal activities without ever diagnosing or classifying me. He talked about the importance of being a part of something bigger than myself and convinced me to start singing in a choir, which brought me great relief, even though I have never been a good singer. Over months, I improved, but I never returned to my previous self. I was forever changed, which I think most people are after facing this level of despair.
My next significant encounter with mental health care happened 15 years later, halfway through medical school. After a rough breakup, I went into a new crisis, now as the mother of two little girls. I had stopped sleeping and did what I had been taught at medical school: I sought help through psychiatric services. I was not anticipating that this would occur but I was admitted to the psychiatric ward. Being inpatient was a highly alienating experience—silent, worn-out wards where nobody talked except to offer pills. I quickly realized this was not a place for me to recover and went home to do the things I had learned very early in life, removing attention from myself and re-engaging in activities. And I slowly improved.
My third encounter occurred during my residency in psychiatry. Once again, I felt horrible and had stopped sleeping. One day, visiting my supervisor, whom I deeply admired and respected, for a regular meeting, I chose to share my struggles through life. When I left her office, she had diagnosed me with bipolar disorder and prescribed an antipsychotic medication. I remember going home feeling utterly helpless. I soon started analyzing every aspect of my life through the prism of severe mental disorder, even questioning my ability to be a mother and psychiatrist. I felt trapped and disempowered. At this point, I had been trained to view severe mental disorders fundamentally as biological dysfunctions, leaving me with the belief that I had a lifelong dysfunctional brain in dire need of medication, with little hope for healing or cure. Throughout my training and early career, alternative perspectives on mental distress were ignored or even mocked, including by myself at times. However, I carried a valuable lesson from my youth—that I could heal by shifting my focus away from feeling wronged and defective, and toward activities greater than myself. Gradually, I improved.
People often ask me to elaborate on how I now understand my struggles and how I have recovered. The truth is, I don't have any great, replicable answers that generalize to other people. For me, I prefer to view my struggles as challenges of living rather than as disease states. As for recovery, I find it a potentially contentious concept. I have a meaningful life today, but I still experience periods of immense difficulty and therefore cannot say I have fully recovered from anything. Instead, I have found peace with my destiny of living with a troubled mind. For me, this peace came from stopping the search for medical diagnoses and from taking ownership of my struggles. This shift has been a turning point in my journey. I recognize that my earlier beliefs about the nature of psychiatric diagnosis are aligned with a reductive, biomedical conceptualization and do not capture or do justice to a more philosophically-nuanced medical understanding of psychiatric categories. I welcome such “biopsychosocial” understanding and see it as a positive development, however, it remains the case that as far as my own lived experience goes, I have a strong inner resistance to conceptualizing my difficulties in diagnostic terms and I have not found this approach to be helpful. On the contrary, I have found it to be detrimental. I also know that I am not the only one. Many individuals have similar sentiments and feel frustrated at the ability of the mental healthcare system to accommodate them.
Looking back at these episodes, I see my first encounter with psychiatry as a teenager as a pivotal moment. I am immensely grateful for that initial meeting. The story the psychiatrist told about and with me was not one of being disordered or wrong. I was never labeled or diagnosed. Instead, it was a story about the importance of engaging in life activities, which gave me the experience and belief that I could heal myself.
I sometimes wonder what would have happened if I were 13 years old today, with the current emphasis on early identification, rapid diagnosis, and early intervention treatment. I could easily have been diagnosed with a first episode psychosis. How would it have affected my life to be included in early intervention, diagnosed, perhaps medicated, and surely receiving psychoeducation about my “disordered” brain? I do not know. Perhaps my experience would’ve been no different from that of so many others who go through such programs, but the thought experiment leaves me immensely uncomfortable and I am glad that my own story was different.
During my first decade as a psychiatrist, I tried to ignore my own history and acted like a well-behaved young doctor, diagnosing and explaining mental disorders in the language of “biochemical imbalances” and the need for long-term medication, because that was how I had been trained and that was how I had seen my colleagues practice. But a nagging cognitive dissonance bothered my integrity. I had personally never felt helped by what mainstream psychiatry had to offer; rather, I had found it hopeless and disempowering to understand myself through the prism of pathology, yet this was the only model I offered my own patients. I would never claim that the diagnosis of a psychiatric disorder is wrong per se. In my experience many people react differently than I did, and find peace and understanding in being diagnosed. On the other hand, there are others like me, who feel trapped by a diagnostic label, and for such people I may have replicated my own disempowering experience as their physician.
Over the years, the cognitive dissonance grew into a full-blown scientific and philosophical crisis. I started reading about critical psychiatry and service user movements, discovering that many people were dissatisfied with current conceptualizations or felt mistreated in clinical care. Echoing my own history, I found it difficult to ignore these “unhappy customers” and reject their grievances as manifestation of a lack of “insight.” The clash of perspectives initiated a need to study the philosophy of psychiatry, helping me navigate my own dilemmas and paradoxes. Thomas Kuhn has suggested that when a paradigm shift is approaching, people start engaging in philosophy, whereas during periods of normal science they are preoccupied with fitting the pieces of a jigsaw puzzle. Seen retrospectively, my crisis can be viewed as a microscale paradigm shift, initiated by the internal clash of incompatible paradigms represented by my lived and professional expertise. The shift I experienced involved moving from a hegemonic, essentialist view of mental illness to valuing a plurality of epistemic perspectives in which non-medical ways of thinking were also welcome. My previously dominant professional understanding of psychological problems was challenged, leading me to become more open to and curious about alternative viewpoints. This shift mirrors the ongoing clash between critical and mainstream perspectives in psychiatry. Giving up my own hegemonic position in clinical practice filled me with insecurity about my own professional role. Philosophy of psychiatry saved me. As medically trained doctors, we get little exposure to philosophy of science. We are trained and socialized to think that mental health distress, if sufficiently researched, can be neatly arranged like a periodic table of disorders. Our scientific training is primarily that of positivistic, quantitative scientists, placing ourselves at the top of the epistemic hierarchy. What I came to acknowledge during my philosophical period, which may seem obvious to many other branches of academia, is that we have built psychiatric practice on a particular set of basic philosophical assumptions—rules of the game, so to speak—but a scientific study and practice of mental healthcare can be based on other, equally legitimate rules as well. This realization allowed me to accept that there are multiple ways to know and build knowledge of mental distressing and disabling phenomena, generating in me an epistemic humility that allowed for equal dialogues with people who think of these issues in different terms that I do.
I see this process as a case of coproduction on a microscale, in a person—me—representing two different and opposing perspectives. The full clash was allowed to happen because there were no power asymmetries. My professional self did not have the power to silence my lived experience self. I had no other choice but to face my internal conflict and deal with the complexity and incompatibility. In a room with people holding different epistemic positions, epistemic injustice is an elephant in the room. People with a professional epistemic perspective may, more or less consciously, view lived experience as less credible due to negative stereotypes. This epistemic inequality is not only a barrier to co-production but also a profound case of stigma that should be addressed.
Despite official support, with journals and conferences increasingly encouraging academics to include and collaborate with people with lived experience, tokenistic inclusion remains an issue. Often, people with lived experience are included merely to make academics appear woke without genuinely having a say. This tokenism may stem from mental health professionals’ unwillingness or inability to consider other frameworks as equally valid. In my case, I was unwillingly forced to explore my own implicit assumptions about the nature of knowledge, and thereby question my own superiority. This internal co-production forced me to acknowledge the complexity and incompatibility of my perspectives, recognizing that knowledge is always interpreted and filtered by the observer.
Achieving epistemic humility was a turning point for me. While I do not reject the medical model as one way to conceptualize and research mental distress and impairment, I consider it to be inadequate, and at times harmful, if it is treated as the sole, legitimate framework for understanding mental health. We need innovative thinking to reshape the scientific and ideological foundations of this field. The third space, where paradigm clashes create new perspectives, is where the magic can happen and where we can embrace, rather than shy away from dissensus.
Finally, does my history render me competent or merely fragile? I can assure you that my work life was easier before I ventured into Homi Bhabha’s third space, and possibly I presented more reassuringly as a physician when my clinical work aligned with the medical model. Now, my contact with people is based on a humbler ground, as a co-pilot exploring what conceptualizations and frameworks are experienced as more helpful for each individual. There are benefits and costs associated with practicing in this manner, but in my case, a pluralistic approach is best aligned with the sources of knowledge I have access to, and therefore more authentic. I feel less in conflict with myself as a psychiatrist and hopefully my patients feel more empowered and fulfilled. I don’t intend to imply that only professionals with lived experience can enter this third space. Rather, I suggest that everyone has an opportunity to experience the negotiation of meaning and representation that arises when we seriously entertain multiple epistemic perspectives on the nature of mental health problems. I do believe, though, that such an undertaking requires a hard-won cultivation of epistemic humility.
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I would love to read more from Dr. Speyer. What a fantastic, searching, and erudite essay.
Wonderful essay. Look at this quote "I had been trained to view severe mental disorders fundamentally as biological dysfunctions, leaving me with the belief that I had a lifelong dysfunctional brain in dire need of medication, with little hope for healing or cure." With this in mind, why do many psychiatrists wonder why there is major pushback against them? Their interventions can induce deep despair. This is in complete contrast to the first psychiatrist, who gave no diagnosis or pills, but guided her out of her deep teenage anxiety.