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What It Really Means to Be Lonely and Isolated

"Part of this particular hell was that no one else understood that it was hell.”

Key points

  • Loneliness and isolation are big problems globally, but especially for those with serious mental illness.
  • First-person accounts highlight the depth and breadth of social disconnection.
  • Those with lived experience are valuable contributors to the discourse on isolation and potential solutions.

“I thought that I must be in hell, and that part of the meaning of this particular hell was that no one else around understood that it was hell.” —Anonymous (1992)

Both being alone (isolation) and feeling alone (loneliness) are common to the human condition, though they can be nonetheless devastating. Although already a growing concern before the COVID-19 pandemic, these challenges became more front and center in the context of public health measures and existential crises that surfaced in its wake.

Despite a clearly increased global awareness, we still don’t know enough about why some are more susceptible to social disconnection than others. For example, those with serious mental illness tend to experience chronic isolation and rates of loneliness that are double those in the general population, yet the reasons why are less clear, making it a struggle to come up with any concrete, long-term solutions.

Isolation and loneliness are not the same–we think of the former as simply being alone, at times a welcomed solitude, while the latter is a distressing state of being disconnected from others. One might be isolated but not lonely, or lonely but not isolated (the two are only modestly correlated at best).

In turn, there are different reasons one might experience isolation, loneliness, or both. Yet it’s been hard to identify clear and consistent contributors, at least partly due to the myriad ways we conceptualize and measure social disconnection across studies, as well as the idiosyncratic ways people experience it.

What’s largely missing from our understanding are first-person perspectives that highlight the breadth and depth of experiences of social disconnection. Identifying the shared sources of human concerns like loneliness and isolation is clearly a worthy pursuit. Yet we find, time and again, that such pursuits don’t quite pass muster when it comes to truly helping a given individual and their unique experience–there’s no such person named “average” after all.

Taking a step back, we might question the utility of identifying correlates of social isolation and loneliness at the group, or nomothetic level, especially when it comes to finding actionable solutions to the problem.

As one could argue is true with understanding most psychological phenomena, an idiographic approach to identifying specific properties of a given individual is at the very least complementary to the standard training and discourse in the field (i.e., in formulating generalizable theories that apply across humans).

First-person accounts using qualitative research methods can further shape the narrative of what it means to experience something as human as social isolation. There is so much to learn and so little to lose by unpacking the lived experience of extreme social disconnection.

A recent paper published in the Journal of Mental Health identified key themes of the experience of loneliness among people with serious mental illness (Ludwig et al., 2022). Findings provide a telling example of how personal accounts can highlight contributions that complement, and at times go beyond, the level of the group.

Although symptoms were identified as one contributor to loneliness, contextual factors, such as financial and other resource limitations, were also highlighted. These structural determinants of disability and quality of life among people with serious mental illness, a highly marginalized group, are often ignored in the literature, given the typical emphasis on internal factors measured in traditional psychiatric research.

In another recent study, authored by researchers and persons with lived experience of psychosis, experiential themes were extracted from first-person accounts across the clinical stages of illness, building network maps highlighting interconnections among individual narratives (Fusar-Poli et al., 2022). Social isolation, loneliness, and social anxiety were central experiences before the onset of a disorder, prior to the “paranoia” and “voices” following a full psychotic episode.

In later stages of the illness, social isolation and loneliness re-emerged as central to the narratives, tied to the stigma of being diagnosed with a serious mental illness. Stories of recovery, often absent from the published literature, also uncover themes of the social isolation experience. Individuals expressed feelings that the worst had passed, an improved ability to cope with symptoms, and increased occupational functioning, yet these areas of growth did not reduce ongoing feelings of loneliness and isolation.

First-person accounts of the lived experience of psychological challenges such as these, from early isolation to the ostracism associated with recurrent psychotic episodes and ensuing stigma, highlight the benefits of diving deep into the phenomenology of individual narratives. While every human is unique, a network narrative approach like that applied in this study shows an innovative way to link idiographic with nomothetic accounts of human experience.

Furthermore, this study exemplifies how people with lived experience can contribute as central decision-makers in the research, challenging academic ableism pervasive in the field and setting research questions that more directly address the problems of those with lived experience.

When it comes to the multifaceted nature of social isolation and loneliness, who better to ask and answer key scientific questions than those experiencing it firsthand?

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First Person Account: Portrait of a Schizophrenic. (1992). Schizophrenia Bulletin, 18(2), 333–336.

Fusar-Poli, P., Estradé, A., Stanghellini, G., Venables, J., Onwumere, J., Messas, G., Gilardi, L., Nelson, B., Patel, V., Bonoldi, I., Aragona, M., Cabrera, A., Rico, J., Hoque, A., Otaiku, J., Hunter, N., Tamelini, M. G., Maschião, L. F., Puchivailo, M. C., … Maj, M. (2022). The lived experience of psychosis: A bottom-up review co-written by experts by experience and academics. World Psychiatry, 21(2), 168–188.

Ludwig, K. A., Brandrett, B., Lim, M. H., Mihas, P., & Penn, D. L. (2022). Lived experience of loneliness in psychosis: A qualitative approach. Journal of Mental Health, 0(0), 1–8.