Collaborative Study Challenges Traditional Views of Depression, Enriches Understanding

Researchers and experts by experience collaborate to offer an in-depth perspective on the realities of living with and recovering from depression.

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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 specialties. 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-centered 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)

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Justin Karter
MIA Research News Editor: Justin M. Karter is the lead research news editor for Mad in America. He completed his doctorate in Counseling Psychology at the University of Massachusetts Boston. He also holds graduate degrees in both Journalism and Community Psychology from Point Park University. He brings a particular interest in examining and decoding cultural narratives of mental health and reimagining the institutions built on these assumptions.

19 COMMENTS

  1. I think it’s a positive approach to incorporate into research the narratives of experts by experience.

    But one conclusion I came out from the review is that since there is a richer way to express one’s depression, real or imaginary as disease, there are more ways to be depressed.

    And that also can have the effect to make the “diagnosis” even more vague and inespecific. More things can be labeled as expressions, forms, feelings, thoughts of depression. And that does not sound like a good thing. Not surprising given the lack of epistemic foundation. Vagueness breed vagueness.

    And it ignores the point that depression as a trait, condition, disease, disorder and in this case plurality has no basis in reality beyond the intersubjective.

    And it kind of keeps propeling the narrative that for most people diagnosed with depression, regardless of how they came to be diagnosed, depresion is a real thing, which it is not a given since it has no objectivity beyond belief. Seeing is not believing since the mind can’t be observed directly.

    And this research seems more on par with historicosociological research: life experiences of factory workers in 19th century England. Or women’s voices from the madhouses of 19th century England. Or the lives of children living in the poor houses of 18-19th century England. Etcetera.

    And just for not remaining critical, it might be great to have more research about persons with lived experience in the mental health uncare system.

    I bet there will be less diversity, more commonality, less motifs, more weight, more insight and more clarity, that provides a stronger signal if some researchers would interview experts by experience like: Bones, Birdsong, KateL, Jeanne, John Hoggett, mura, Someone Else, Krista Hartmann, Mella, joel stern, and so many others the narrated their stories here at MIA. Many that don’t post anymore…

    And cowritting seems like a great idea indeed.

    I apologize, I have on and off anomia, and there are so many stories, that keeping track of them is difficult for me.

    Aware that I am being selective, even biased, but on first principles you have to enrich your sample with the signal you wan’t to amplify: i.e. you have to filter it. So that one’s sometimes thick head, euphemism, hears clearly what the experts by experience can tell, and HAVE to tell to the panderers of mental illness, it’s study, it’s diagnosing and it’s treatments…

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  2. And just a disagreement from my, uuuggh!, ethnic background: “nervios” in Mexico refers more to anxiety than depression.

    Aware that anxious depression, depression with anxiety features and yarayarayara are in the MI discourse.

    Just to clarify: what does my ethnicity, my ethnic background means when I am a mestizo from a diverse indigenous background, barely noticeable in my particular case, from a country like Spain that had middle easterns not only muslim, north europeans, italians, otherwise africans, etc. And in Mexico we had a rich commerce, and probably genetic “mingling” with the far east through the Phillipines for centuries. Which in my case might be very obvious for my maternal grandmother that I never knew?.

    And if someone saw my extended family not knowing we are mexicans, and what does that really mean to “background”, would probably have a lot of trouble speaking of race or ethinicty, pallete does not do the honor to the diversity my family has.

    The only place on earth probably not represented in Mexico’s diversity is probably Australia/New Zealand, given it’s relaive late colonization, in terms of mingling, that more or less coincided with the abolition of commerce with the Phillipines.

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  3. So the gods of psychiatry are finally facing the fact that “bio-psychiatry” is essentially a drug racket.
    I wonder if they’ll end up using psychiatric drugs to sedate themselves from feeling the effects of their long-overdue existential crisis.

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  4. Oh, I get it now: however you approach it, it’s STILL the patient’s fault.

    If you REALLY want to help someone, tell them to go read “Sedated: How Modern Capitalism Created our Mental Health Crisis” by Dr. James Davis. They might see things a whole lot differently.

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  5. Dear Mr. Karter, As a fellow contributor to MIA, I applaud your deeply insightful and learned description of what it’s like to live with depressive symptoms. I will refer to your article as I further do my writing and research. I hope your article gets a close reading. Michael Robin

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  6. ‘effective care and intervention’ hmm – as awful as it is, being ‘de-pressed’ is a human experience and response to what is and has been. Effective care can only really come from having people on your side, ‘caring’ relationships with people that know parts of you and are on your side.

    ‘Intervention’ unless this means tackling the many and varied cultural disorders causing distress we’re missing the point. Today, we stand on the brink of nuclear annihilation, climate catastrophe, while putting up with body and mind breaking jobs, community breakdown, debt, and a grossly unfair sick society with a tiny minority lording it over everyone else while most struggle to get by.

    Interventions should be aimed at changing our cultural disorders not setting about the atomised individual with individual ‘treatments’ with either no evidenced based harmful drugs and no evidenced based and often harmful ‘psychotherapy’

    Perhaps MIA might consider reviewing or interviewing William M Epstein author of many books including these
    The Illusion of Psychotherapy
    Psychotherapy as religion
    Psychotherapy and the Social clinic in the united states, soothing fictions
    or maybe the therapy industry by Paul Maloney
    etc

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      • That reminds me of the criticisms of NAMI and the like, which are very coherently put in:

        https://www.madinamerica.com/2023/09/resigned-mental-health-america/

        Which reminds me of the wikipedia wars, and the “dictatorship” of the Linux kernel developer community. Similar dynamic relevant to the way KOLs have censored Gotzche, Montcrieff, etc. Even how Frances appeared to switch sides. Those directly related to the problems of psychiatry.

        And imagine editors, reviewers and commentators of horseshoe tecnology, an apt metaphor for psychiatry, not clinical psychology of course, if not for the fact that horshesoes in this case are used for cars, i.e. humans. As in “walk even run as a ‘normal’ person, not as a if disordered, sick or spectralized”. (Note: sarcasm)

        If horseshoes were to be proven baseless, ineffective or harmfull, then what?. Folks are gonna find something else?.

        Isn’t that the problem with psychiatry in the first place?. Was the offer, the option to retrain psych pros as therapist a realistic alternative?.

        Is criticizing clinical psychology not relevant to that OFFER, that ALTERNATIVE, put forward I think by either Gotsche or Breggin?. In the sense of analyzing if it’s a valid, realistic, useful anternative?. Or is that beyond question?. That became a FACT?.

        Isn’t that alternative relevant to the problems of psychiatry?. Problems relevant to MIA, as stated somewhere in the pages of TOS or mission of MIA.

        Lack of alternatives is what leads to psychiatric incarceration AND coercion NOS.

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  7. I have been depressed since childhood. I am 73. It was not until 3 years ago when I met special people, that I entered the world of abuse and negle ct of my childhood and found, finally, the light at the end of the tunnel of imprisoning depression. Look at childhood experiences and especially, traumas for many causes of a lifetime of depression.

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  8. And as an addon to my apparently unpublished previous comment:

    “nervios” is not a latino word referring to MI, is hispanic: “mujeres al borde de un ataque de nervios”.

    Hispanic might seem narrower than latino, but for people who speak spanish is actually broader captured by the word “hispanohablante”, that includes people even in the Phillipines, which is nowhere near latin america, also where spanish is kind of a creole, and on way to it’s dissapearance.

    Hispanoablante, btw, seems more appropiate to me to use in the article and probably it’s review than “latino”. It reflects at least in this review and it’s article a lack of understanding of why the word “nervios” is used, as conveyed in part by its use outside latinamerica, and possibly before the conquest of america. But I haven’t read that much philology.

    And I am apparently not alone in that, in a bad way.

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  9. So, now from a fragmented narrative, in my experience “nervios” refers more the anxiety in Mexico than to depression.

    Aware that anxious depression, depresed anxiety or whatever offensive to the “tongue” of Cervantes used to reconcile antinomies in depression professional narratives.

    Which reminds me: Once a bullying “professor” left the room trying to say the last demeaning word to me by saying that if my experience was so good why didn’t I published it. Details unimportant.

    To which I answered: “Because I don’t have to, it is already published”.

    Guess who became my enemy number one after that?

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