When depression is analyzed and categorized through clinical definitions, it often omits the complex, deeply personal experiences of those living with it. A new study published in World Psychiatry challenges traditional conceptions of depression by taking a “bottom-up” approach, foregrounding the voices of those with lived experience, and co-writing their accounts with academic experts.
This landmark study was undertaken by Paolo Fusar-Poli and an extensive team of collaborators from diverse backgrounds and specialities. Academics joined with individuals who have personally faced depression, representing a comprehensive global perspective, drawing from experiences across four continents and 11 countries.
“The vividness of the subjective experience of suffering can only be captured by allowing personal insights to emerge, minimizing exclusion and misrepresentation of the affected individuals’ perspectives,” the authors remarked.
“This study outlines some essential (paradigmatic) ways by which depression expresses itself. However, it is evident that there is no such thing as a unique experience of depression, which ‘appears in various different clinical forms’ but rather a plurality of individual experiences… Despite such heterogeneity, we found that most depressive experiences have broader themes in common, which express a radical change in the overall structure of one’s overall relationship with emotions and the body, the self and time.”
This multifaceted portrait of depression paints a far more intricate picture than the one-dimensional definitions often presented in traditional psychiatric frameworks and the DSM.
Additionally, the study underscores the variability of depressive experiences. While some broader themes emerged consistently, it’s clear that there isn’t a “one-size-fits-all” description for depression. Instead, a spectrum of individual experiences comes together under the umbrella of this mental health condition.
Such findings underscore the necessity of viewing depression not merely as a list of symptoms to be treated but as a complex alteration of a person’s relationship with their world. Recognizing and addressing this existential shift is essential for effective care and intervention.
Depression, as illuminated by experts by experience and academics, is an all-encompassing shift in one’s sense of belonging, marked by profound changes in emotions, self-perception, body, time, and interpersonal connections.In this collaborative effort, scholars teamed up with individuals who have personally grappled with depression to provide a comprehensive portrayal of the lived experience of depression.
Traditional academic inquiries have often been criticized for their detached, theoretical perspective, while personal narratives can sometimes offer fragmented viewpoints. To address these shortcomings, this innovative study merged expertise from both domains using a “bottom-up” approach. By enhancing earlier methodologies, the researchers sourced insights from a blend of autobiographies and academic works.
The research was broken down into four phases. It commenced with an examination of existing literature by a foundational team of both academic experts and individuals who had firsthand knowledge of depression. Following this, the gathered data underwent thematic analysis, producing preliminary topics that encapsulated the essence of enduring depression, the societal and cultural contexts surrounding it, and the journey of recovery.
The third phase casts a broader net to ensure a comprehensive and globally representative perspective, bringing together a diverse group of firsthand experts and caregivers from four continents and 11 countries. The study’s concluding phase interwove phenomenological insights, culminating in a manuscript crafted collectively by the entire team.
The Lived Experience of Depression:
In a detailed exploration of the lived experience of depression, researchers identify three primary narrative themes.
First, the experience of emotions and the body involves overwhelming negative feelings, like guilt and despair, that are pervasive and not necessarily tied to specific events. Such sentiments are deep-seated and often described as objectless. Many who suffer from depression describe a paralyzing fear of various aspects of life, from change to success. Additionally, depression manifests physically, with many reporting a sensation of bodily heaviness and oppressive pain. This physical malaise is compounded by feelings of detachment from one’s mind, body, and the surrounding world, which can lead to experiences of depersonalization and derealization.
The second theme revolves around the experience of the self. Depression often results in a loss of life’s purpose and a disconnect from one’s past self. Individuals may feel imprisoned by their condition, perceiving it as an inescapable hole or fog. Such feelings of entrapment can extend to one’s thoughts, leading to cognitive difficulties and a perceived loss of agency. This emotional and cognitive imprisonment sometimes culminates in the perception of oneself as numb, empty, or even non-existent, leading some to contemplate death as the sole escape from their suffering.
Lastly, the experience of time is profoundly altered in depression. Biological rhythms are disrupted, impacting sleep, hunger, and libido. The past becomes a looming presence, unchangeable and overbearing, while the present feels stagnant. The future, rather than offering hope, appears void of any positive possibilities.
The Role of Social and Cultural Context:
The researchers also attended to the different experiences of depression across time, context, and culture.
In the West, the predominant biomedical perspective views depression as an intrinsic mood disorder. Yet, this is not a one-size-fits-all diagnosis. In many non-Western cultures, depression may take on religious or spiritual undertones.
The very vocabulary of depression shifts across borders. In broad strokes, for instance, in Latino cultures, one may describe feeling a weight on their “nerves,” whereas those from Asian countries might speak of an “imbalance,” and in Middle Eastern contexts, troubles of the “heart” might be the primary descriptor.
For ethnic and racial minorities, the experience can be even more complex. Trust in the healthcare system is often fractured, not necessarily by the illness itself but by racism and cultural misunderstandings. This lack of trust amplifies the feelings of isolation, a hallmark of depression.
Gender, too, plays a pivotal role. Men, bound by societal constructs of masculinity, often find it challenging to articulate their emotional distress. Women, on the other hand, navigate their own set of societal pressures tied to emotional expressiveness and roles like motherhood.
A common thread in the tapestry of depression is the challenge it poses to interpersonal communication. For many, the condition creates an insurmountable barrier, leaving them grappling for words and metaphors to convey their pain. The descriptions range from being in “a dark place” to feeling like one’s back is against “a wall.” This struggle for articulation often leads to self-imposed isolation, where the act of socializing feels less like a comfort and more like a potential harm. Yet, as they withdraw, many are met with a profound and paradoxical longing for connection.
Recovery from Depression:
The study identified four dominant narrative threads in the journey of recovering from depression.
Subjectivity of Recovery: Many describe recovery as more than symptom relief, viewing it as a profound existential transformation. Some even prefer the term ‘discovery’ over ‘recovery,’ highlighting that depression is not just a clinical issue but a broader human experience.
Pharmacological Ambivalence: In recovery narratives, antidepressants are described as essential for some, but there’s also apprehension about potential dependencies. The effectiveness of these drugs often rests on the strength of the patient-clinician bond, underscoring the need for personalized care.
Psychotherapy’s Double-Edged Sword: This therapeutic avenue is often described as a sanctum where patients often feel heard and understood. For many, it fosters a deep introspection, leading to an enhanced sense of self-awareness and clarity about their future. Nevertheless, psychotherapy isn’t a panacea. Some find it intrusive, with sessions occasionally exacerbating their distress.
Value of Social and Physical Interventions: Occupational therapies and physical activities can enhance self-worth and mental well-being. Peer support, too, emerges as a cornerstone of recovery, offering a haven of mutual understanding.
Ultimately, the multifaceted narrative underscores that there’s no singular path to recovery, emphasizing the importance of personalized, holistic approaches.
Central to the research is the concept that depression is not merely a clinical disorder but a disturbance in how one experiences their world, from emotions and bodily sensations to their perception of time. These lived experiences often converge around feelings of disconnect, from oneself and others, and a profound alteration in one’s sense of belonging to the world.
Critically, the research advocates for a shift in clinical practice and research toward a more person-centred approach. By emphasizing the importance of lived experiences and personal narratives, the study aims to better equip healthcare professionals to empathize with and support those with depression, ultimately enhancing mental health care and understanding.
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Fusar-Poli, P., Estradé, A., Stanghellini, G., Esposito, C.M., Rosfort, R., Mancini, M., Norman, P., Cullen, J., Adesina, M., Jimenez, G.B., da Cunha Lewin, C., Drah, E.A., Julien, M., Lamba, M., Mutura, E.M., Prawira, B., Sugianto, A., Teressa, J., White, L.A., Damiani, S., Vasconcelos, C., Bonoldi, I., Politi, P., Vieta, E., Radden, J., Fuchs, T., Ratcliffe, M. and Maj, M. (2023), The lived experience of depression: a bottom-up review co-written by experts by experience and academics. World Psychiatry, 22: 352-365. https://doi.org/10.1002/wps.21111 (Link)
Editor’s Note: Part of MITUK’s core mission is to present a scientific critique of the existing paradigm of care. Each week we will be republishing Mad in America’s latest blog on the evidence supporting the need for radical change.