Complaining,Regret,Superiority,and Discovery: Chinese Patients’ Sense Making of Depression in an Online Forum

Literature Review

Frank (1995) argued that ill individuals are wounded storytellers with the need to recover the voices that illness takes away. Storytelling enables the narrator to make sense of painful life events such as depression by telling coherent and complete stories, thus integrating the past into the present and projecting the future. It also helps the narrator to clarify confusion and disturbed feelings, and strengthen interactive abilities. One of the essential features of narrative is that it connects events in meaningful ways, thus constructing chronological or causal accounts that may repair ruptures in an individual’s life experiences. An extensive body of research has shown the potential healing effects of telling life stories on the narrator’s mental health (McLeod, 2004). Following this line of inquiry, researchers have examined the functions of illness narrative (Beck, 2005; Bosticco & Thompson, 2005; Sharf & Vanderford, 2003; Sunwolf et al., 2005). For instance, Sharf and Vanderford (2003) identified sense making, asserting control, transforming identity, decision-making, and building community as the functions of storytelling for those who are ill. Sunwolf et al. (2005) found connecting, knowing, remembering, creating reality, and visioning the future as the functions of storytelling.

Despite extensive research, there are still no conclusive explanations about the origin of depression. Diseases with unknown causes usually leave room for lay interpretations. Biomedical explanation of depression not only reduces the sufferer’s life experience into bodily and mental symptoms but creates an alienating narrative for the sufferer, which further reinforces the sense of inability. Accordingly, people with depression try to give meaning to their illness experiences. Kangas (2001) distinguished three major narrative types for depression sufferers: shortcomings of childhood and adolescence development; excessive demands and role conflicts, presented as causes of work-related burn-out; and hardships and severe life events during adulthood. Tanaka (2020) revealed depression-linked beliefs among older adults with depression, which include guilt and regret, pessimism, futility of treatment, and desire to be needed by loved ones and society. Roystonn et al. (2021) elaborated on three major themes of depression narratives through examining how young adults with depression use metaphors to describe their illness experiences—depression as affliction, depression as journey, and depression as supernatural.

Some researchers found a more positive trajectory of depression sufferers’ growth. Grob et al.’s (2020) study of emerging adults found that increased experience with cycles of depression can make young adults adapt to depression in the following ways: (a) mature perspectives and coping mechanisms; (b) deeper self-knowledge and direction; and (c) emergence of a life purpose. Based on the first-hand accounts of psychotherapy clients, Heatherington et al. (2012) suggest that the experience of accessing, disclosing, exploring, and understanding distressing life experiences, with an empathic, non-judging other, may constitute a corrective experience.

The spread of the Internet in the last two decades provided unprecedented opportunities for the creation, dissemination, and study of illness narratives. Researchers have pointed out the advantages in studying online depression narratives. Benzon (2008) argued that due to its accessibility and anonymity, the online space allows people to form more accurate depictions of their mental condition. Compared with narratives from interviews, online narratives are unaffected by the researcher’s gaze or the expectations of an interviewer (Clarke & Van Amerom, 2008). Hookway (2008) also held that online platforms enable people to write more openly and candidly about their lives, and share their negative life experience or intimate details that might be difficult to express in offline situations.

The study of online depression narrative has yielded a series of insightful findings. Horne and Wiggins’s (2009) analysis suggests that the online community works as a site for suicidal identities to be tested out, authenticated, and validated by individuals suffering from depression. Kotliar (2016) found that depression blogs serve to bridge the seclusion that characterizes depression and the exposure offered in public space, and thus offer people an opportunity to share intimate life experience, form communal bonds with their readers, and collaboratively revise their narratives, in the quest for coherent and satisfactory explanation about depression.

Through examining online stories about postnatal depression (PND) on the popular parenting website Mumsnet, Jaworska (2017) revealed that the narratives drew on two major narratives: confession and exemplum—the former is a “way in” to disclose PND; the latter serves as a knowledge resource and tools of validation helping women to narratively repair “spoiled” identity. Kinloch and Jaworska (2021) found that in the explanations for their PND experiences, mothers point to the relationship between feeding, childcare, and loss of bodily autonomy (and thus sense of self), in an attempt to reclaim ownership of the body and a sense of control and agency. Sik’s (2021) analysis of online depression communities shows that they enabled lay reinterpretation and criticism of expert biomedical discourses, along with analyzing pragmatic advice and expressions of unconditional recognition, which serve the function of secular ritual healing.

The phenomenology of illness emphasizes the patients’ interpretations of their experiences. Kleinman (1988) argued that culture shapes individuals’ experiences of suffering because people learn the way to think about their pain. Chinese people’s mental illness is usually associated with stress from family environment or intergenerational relationships (Hsiao et al., 2006). This might be because in Chinese society, an individual’s sense of self is deeply embedded in family and social relationships, and the Chinese culture overemphasizes interpersonal harmony and compliance to the elders. As Chan et al. (2002) argued, although the family is an important source of social support in Chinese society, it is also a burden and creates stress. Hsiao et al. (2006) found that Chinese people tended to attribute mental illness to the lack of interpersonal harmony when family members failed to fulfill their culturally defined behavior expectations. More recently, Tang and Bie (2016) studied Chinese college students’ narratives of mental illness and found that men’s mental illnesses were often attributed to social injustice, problematic upbringing, or sexual orientation, while women’s mental illnesses were often attributed to relationship problems and weak character. Tang et al. (2021) found that postpartum mothers suffering from depression in China often attributed it to external factors that could be changed (e.g., lack of support from in-laws) or to internal factors that will disappear over time (e.g., hormonal fluctuation).

Studies about Chinese depression patients’ sense making of their experiences are relatively rare, and such studies are mainly conducted through interviews and the number of participants is very limited (e.g., Tang & Bie, 2016; Tang et al., 2021). Due to convenience, popularity, and anonymity, online depression community has attracted many patients to share their intimate life experiences with similar others. Therefore, based on data from the largest online depression community in China, this article aims to investigate the Chinese patients’ lay sense making of depression, focusing on the narrative accounts of their experiences presented in these stories.

Method

Douban is a popular Chinese online platform on which users evaluate films, music, and books, as well as join different interest groups, which are often called “Douban groups.” Through the functions of posting, replying, likes, and private messaging in the group, a virtual group space has been built for users. The “Philosophical Treatment of Depression” group, founded in August 2020 and currently with 58,000 members, was the largest online depression community in China. The founder of the group explained on the management page that the purpose was to let members explore the possibility of curing depression through philosophical approaches, rather than taking the group as a “place to pour despair.” Because such online depression groups are rare and with the participation of more and more members, the originally designed philosophical discussion of treatment has been gradually replaced by life narratives of participants.

The research data consists of 160 stories posted from December 2020 to September 2021. There were about 1,000 postings during this time period, and more than half did not satisfy our requirement. The selection criteria were as follows: (a) the post has two or more paragraphs and more than 400 Chinese words and (b) the post contains a fully developed narrative. The two authors selected 320 stories based on these criteria and then randomly selected half of the stories for analysis. Because most of the narrators wonder about the cause of their depression and why it happened to them in particular, their answers to these questions are the subject of this article.

The analysis focuses on identifying the themes in the narratives, especially the ways that the narrators make sense of their depression experiences. The two authors carefully read the full texts of the stories several times, paying special attention to the statements that entail such sense making. The two authors tried coding 20 stories and achieved consistency after discussion. Then, one of the authors coded the remaining data, and the results were reviewed and refined by the two authors together. MaxQDA version 2018 was used to conduct a systematic thematic narrative analysis, which shares some features with grounded theory: our interest is in generating thematic categories across narratives even as individual narratives are preserved and the analysis is in the narrative research tradition (Riessman, 2008). We employed constant comparison to conduct thematic analysis of the narratives—the primary attention is on “what” is said (Riessman, 2008). The focus is not on narrators’ description of events, but on accounts that construct their experiences and emotions. We compared data from the same narrator and data from different narrators and compared stories, experiences, and emotions against other stories, experiences, and emotions for similarities and differences. This method helped to ensure credibility of the analysis.

The authors carried out four rounds of coding together, including initial coding, focused coding, axial coding, and theoretical theme coding. Initial coding stuck close to the data and remained open to all possible theoretical directions. Focused coding sorted out significant and frequently appearing codes including, for example, codes attributing depression to family—parental control, parental neglect, parental irresponsibility, etc. Axial coding sorted out the major codes (e.g., family, school bullying, social norms, perfectionism, and lack of disclosure) and their dimensions. During the thematic coding phase, multiple provisional themes were compared and all the codes and the relevant data under each theme were examined to ensure that the data formed a consistent theme. We find that four overarching themes can govern all the codes and data: narrative of complaining, regret, superiority, and discovery. Narratives were analysed until no new codes appeared after coding about 110-120 cases. We have also shared our results with a Chinese clinical doctor in depression/mental health, and he confirmed that the results are consistent with what he has found in practice. The analysis used the original Chinese text, and the excerpts used in the article were translated into English by one of the authors who holds a PhD from a US university, which helped to guarantee accuracy of the translation.

This study was exempt from Institutional Review Board approval because the data used are only from publicly available online communities. Douban is an online public space, and users know that their posts are available to the public. Therefore, people use pseudonyms to post messages and their identity is anonymous. However, the researchers still sought consent from the platform to use the community’s data, following procedures adopted in previous research (Kinloch & Jaworska, 2021). We also changed some pseudonyms of the participants to further protect the privacy of the participants. Therefore, this study has complied with ethical requirements.

Findings

In general, members of the online depression community used four overarching types of narrative to make sense of their depression: complaining, regret, superiority, and discovery. The trauma suffered in the past is often the source of current misfortune. By tracing back to the past, individuals can delineate their life trajectory, understand the relationship between the past and the present, and grasp the direction of future life. In the face of depression, members also explain the current life experience through reflecting on the past. As a theme throughout the narratives, depression connects all piecemeal life events together to form an explanatory logic.

The Complaining Narrative

When recalling the causes of depression in the past, group members often put themselves in a failed family or social relationship and looked for clues to the illness. In the narrative, members often complained about the impact of external pressure, such as parental control or neglect, school bullying, stress from study or work, and social norms, on their mental health. As the victims of such unhealthy relationships, the illness becomes something inevitable.

The Regret Narrative

In addition to complaining about societal factors that cause their illness, members also view the problem as arising from themselves, so as to attribute depression to some defects in themselves, such as personality or ways of thinking. They regret that they should not have thought in those ways earlier. Research shows that compared with blaming external factors, self-blame will result in more negative consequences such as depression and loneliness (Duan et al., 2022). When individuals attribute the negative events in life to factors such as personality or ways of thinking, it will make individuals fall into a sense of helplessness, which may aggravate the degree of depression.

The Superiority Narrative

By attributing depression to specific qualities of the depression group, some members constructed a superiority framework to explain depression. Compared with the stigmatization of depression at the societal level, the members’ explanation of depression has a positive connotation. They believe that depression patients are more intelligent and have a higher level of moral sense than average people. With the help of intelligent and moral superiority, they intend to improve their acceptance of themselves and identification with the group. Depression patients are described to be superior subjects in their narratives. For example, a member explained:

People think that depression is just about thinking and worrying too much, but this is a reflection of sharp thinking. People suffering from depression are not ordinary people, but intelligent people... God-given intelligence often means abnormally active neural activities, leading to a high sensitivity to various pains. In addition, this kind of talent also means intense personality and active thinking, so their sense of things is more thorough and distinctive. (Bo, January 8, 2021)

The positive framing of the sufferers’ personality is used by members to affirm themselves and is promoted as the personal qualities of the whole depression group. This sense of superiority makes it easier for them to accept the identity of the depression group.

At the same time, some members hold that depression patients are kind to others and lack aggressiveness, and often use positive moral characteristics to describe the personality traits of the depressed group, such as “kindness,” “friendliness,” “gentleness,” “delicacy,” “sincerity,” “tolerance,” and “dedication.” In their eyes, compared with ordinary people, they tend to suppress their own needs and prioritize the demands of others. This is viewed by members as indicative of their high moral level:

Depressed, we are all very kind and friendly people. We can sympathize with others’ pain, comfort others patiently, and treat others with kindness to the extent that we can’t help tearing our hearts and lungs... We are infinitely lenient and friendly to others, but extremely strict with ourselves... So people trapped in depression are actually people who sacrifice themselves. (Croaker, August 10, 2021)

By associating illness with personal morality, members turn depression into a moral outcome, thus denying the medical view that depression is a disease and realizing the normalization of identity for depression patients.

The Discovery Narrative

The discovery narrative is one that explains a general behavior or specific event in ways that were not possible when the behavior or event occurred. For some members, after years of trauma, they began to reflect on how things could have been different if they had realized the problem and their agency earlier. For some members, they not only reflect on the causes of depression and what could have gone differently but also develop and articulate a novel understanding of the self, significant others, and key events. They explicitly reframe their problematic narratives as belonging to a difficult past and begin to see positive emotional and interpersonal changes evidenced in the present.

“Lalala” grew up in a single parent family. Because of her mother’s busy work, she trusted Lalala in a relative’s family when she was in primary school. Because she understood the difficulties of her mother’s work, she did not reveal her emotion for missing mom. Such forced “obedient and sensible” life experiences made her hide her real inner needs and internalize anxiety and fear. She consciously got used to this kind of life and no longer expected her parents to give her intimacy. However, she did not expect that the influence of that experience has been hidden in her heart, which eventually led to depression when she grew up. Lalala wrote in [The recovery process of my moderate depression]:

My mother loved me very much since my childhood... In my memory, there have always been only two of us, but I was immersed in love. I was very happy. Because of this, when my mother had to trust me in a relative’s home when I was in primary school at the age of 6, I was so uncomfortable that I missed my mother and cried. The relatives did not mistreat me, but it’s always different from living in my own home... I often write that I miss my mother in my notebook, and then cry until I fall asleep. I dare not and will not tell my relatives about these things. I won’t tell my mother. Maybe it’s because of my parents’ divorce. I have been very sensible since childhood. I was afraid of my mother’s sadness. I learned later that the little girl who cried in my heart when I got sick turned out to be myself at that time. (April 29, 2021)

When she told her mother about her mental state, her mother was very calm and didn’t say anything. To her surprise, her mother brought breakfast to her at 9 a.m. every day. She had breakfast in bed and then slept until noon. Later, she found that her mother’s care cured the little girl in her mind. The member also mentioned another issue that led to her problem:

Later, when I cried, she [1] became a teenager. I knew very well that I was a junior high school student at that time. After my parents divorced, my mother remarried and had a younger daughter. I was always blamed for many things after going to junior high school. But when she turned to my sister, her eyes were like a honey pot full of love. I felt that I was an outsider. This is not my home, but their home. She is not my mother, but my sister’s mother.

The member felt that her younger sister got all of her mother’s attention and love, and she was always wronged by her mother. She decided to make it clear to her mother one day when her mother drove her to the mountains to bask in the sun. After hearing this, her mother also cried, holding her hand and said to her: “Mom is wrong, I apologize to you. I let you bear a lot of burdens that should not be borne by you.” When the member heard this for the first time in more than 20 years, she cried and knew that her second trouble was reconciled. At the same time, she had a better understanding of her mother’s difficulty of raising her and her sister.

For patients with depression, finding their initial cause of illness is a main way to heal the pain. After being diagnosed with depression, Lalala finally chose to confess her anxiety to her mother, and had her trouble understood by her mother and also understand her mother’s difficulty and sacrifice. After this, she developed positive attitudes toward her mother and the relationship with her mother and gradually recovered with her mother’s company.

Discussion

Whereas the specific causes of depression are still unknown and contested across disciplines, the lay explanations and theories also express this multiplicity. Through the study of the largest Chinese online depression community, we found that depression is a multidimensional and holistic illness in the eyes of the sufferers. Even if a core explanation is used by the sufferers in their narrative, it is usually combined with alternative explanations in their sense making. The study contributed to the literature of depression narratives mainly in four aspects.

First, the findings show that the social and psychological explanation of depression, instead of the medical model, is much more popular among the patients. The result confirms earlier theories that emphasize the interdependence of individuals and the social/cultural environment in explaining Chinese patients’ understanding of expression (Hsiao et al., 2006; Tang & Bie, 2016; Tang et al., 2021). Most sufferers of depression viewed parental control or neglect, school bullying, stress from study/work, and social norms as the sources of their painful experiences. Making sense of depression by contextualizing the painful experience in the social and cultural environment, rather than through the biological explanations, is a way for the sufferers to gain voice and may help them to assert control and increase self-esteem (Sharf & Vanderford, 2003). This fact also demonstrates how cultural scripts may have an impact on patients’ depression experiences and expressions of depression, with clear implications for intervention. In clinical practice, such cultural understanding can help therapists become more aware of cultural variability and recognize the degree to which the clients may be influenced by certain cultural norms.

Second, the findings show that stories of depression are also stories of marginalization (Kangas, 2001) and visioning for the future (Sunwolf et al., 2005). Depression in the sufferers’ accounts is usually not presented as a disease but as a social and personal problem, which restrains their ability to act in ordinary ways. These stories tell what went wrong in the individual’s life and thus also suggest what an individual’s life is supposed or expected to be like. In revealing the dark side of life, these stories also depict the ideal life stories of the patients and the ideal social and personal relationships that they are longing for. As Sunwolf et al. (2005) have posited, storytelling facilitates new ways of imagining for people who suffer from severe illness.

Third, the findings also reveal that, despite the negative feelings that exist in the complaining and regret narratives, many patients have developed positive sense making of their experiences, including the superiority and discovery narratives, which is different from the findings of a majority of previous studies that mainly found the negative aspects of depression experiences. For instance, Roystonn et al. (2021) posited that patients’ most common images of depression were darkness, descent, and a weight in the Western society, and they also found that patients in Singapore described their illness experiences with three negative metaphors—depression as affliction, depression as journey (e.g., a long distance race and to the edge of life), and depression as supernatural (e.g., divine punishment). The present study, on the contrary, shows that some patients describe they become depressed because of superior intelligence and/or morality (e.g., prioritizing the demands of others). This way of sense making helps them to resist stigmatization and realize the normalization of identity as depression patients. The discovery narratives also show that the patients are becoming more thoughtful and mature through articulating a novel understanding of the self, significant others, and key events, and usually reframe their problems as belonging to a difficult past, and begin to see positive emotional and interpersonal changes at present.

Finally, the findings from this study have implications for public policy around support for mental health. The Chinese centers for disease control and prevention (CDC) should be aware of the importance of appropriate parenting and a healthy school environment and take active actions to rectify the relevant problems. As shown in the results, many patients attribute depression to earlier experiences with their parents, stress from study, and school bullying. These stories are not only accounts of their individual pain but also reflect on what what is happening in a specific society and time from the individual’s perspective. The Chinese CDC may consider shariing these accounts with families and parents in order to let them know about the children’s concerns, and the parents need to distinguish between abusive control and appropriate care for their children, which are usually a mix in the traditional patriarchy values (Chan et al., 2002). The Chinese schools must also reduce the burden of coursework and take forceful actions to eliminate various forms of school bullying as it has become a serious issue in China.

Limitations

This study also has several limitations. First, although the narratives were taken from the largest online depression community in China, the generalizability to other population is still limited since the data just included one online community. Second, although the anonymous online depression community facilitated sharing stories for the patients, there are still many depression sufferers who do not have access to such online communities and their voices cannot be heard. Thus, our research findings may not be able to reflect their interpretations of depression. Future research could include interviews with depression sufferers who have not participated in such online health communities. Finally, interviewing online participants and incorporating their interpretations into the analysis may help to assess the accuracy of the findings.

Conclusion

This study explored Chinese patients’ sense making of their depression experiences by analyzing the stories posted in the largest online depression community in China. Four types of sense making were predominant among the depression sufferers: complaining, regret, superiority, and discovery. The negative feelings still exist toward the past, which are represented in the complaining and regret narratives. However, many patients have also developed positive sense making of their experiences, their self, and their significant others through superiority and discovery narratives. The stories of depression are stories of marginalization, visioning for the future, and realizing the normalization of identity as depression patients. The findings have implications for public policy on support for mental health.