Abstract

The article approaches the subject of recovery, a sociopolitical movement, field of studies and practices that aims, from the experience of people living with mental disorders, to promote a more optimistic outlook of the prognosis. Aiming to understand the recovery process of people who experience severe mental disorders, qualitative research was developed, based on Gadamerian hermeneutics. We conducted in-depth interviews, in the form of life narratives, with five people who recognize themselves in the process of recovery, and are part of a mental health patient group. Based on narrative analysis, three axes were organized: recovery process facilitators and coping strategies; barriers of recovery process; and relationship with diagnosis. The discussion is based on Canguilhem’s theory; in the logic of psychosocial care, and in theories about the notion of recovery. We identified important intersubjective and sociocultural resources for recovery, however, we concluded that these same elements may constitute barriers to a creative existence, as the social norm remains crossed by the stigma that accompanies mental disorders, and by hierarchical power relations.

Key words:
Patients; Personal narrative; Mental health

Introduction

Recovery is defined as a field of study and, at the same time, of political and social activism of users and former mental health patients¹1 Davidson L, Roe D. Recovery from versus recovery in serious mental illness: One strategy for lessening confusion plaguing recovery. J Ment Health 2007; 16(4):459-470.. In the academic field, it questions the deterministic and negative tendency of the prognosis of mental health problems, showing that the course of serious disorders, such as schizophrenia, can be as varied as unique life experiences¹1 Davidson L, Roe D. Recovery from versus recovery in serious mental illness: One strategy for lessening confusion plaguing recovery. J Ment Health 2007; 16(4):459-470.^,22 Harding CM, Brooks GW, Ashikaga T, Strauss JS, Breier A. The Vermont longitudinal study of persons with severe mental illness, II: long-term outcome of subjects who retrospectively met DSM-III criteria for schizophrenia. Am J Psychiatry 1987; 144(6):727-735.. At the level of social movements, there is the struggle of users for a “collective resignification” of mental illness¹1 Davidson L, Roe D. Recovery from versus recovery in serious mental illness: One strategy for lessening confusion plaguing recovery. J Ment Health 2007; 16(4):459-470.^,33 Lopes TS. Experiências e narrativas de psiquiatras trabalhadores de serviços públicos de saúde mental sobre a prática de cuidado da esquizofrenia [dissertação]. Campinas: Unicamp; 2011.. Among these movements, the Mental Health Consumer/Survivor Movemen³3 Lopes TS. Experiências e narrativas de psiquiatras trabalhadores de serviços públicos de saúde mental sobre a prática de cuidado da esquizofrenia [dissertação]. Campinas: Unicamp; 2011., founded in the USA in the 1970s by users who called themselves “survivors of the traditional psychiatric model”, intended to propose a more optimistic model of personal and political empowerment that they called “recovery”³3 Lopes TS. Experiências e narrativas de psiquiatras trabalhadores de serviços públicos de saúde mental sobre a prática de cuidado da esquizofrenia [dissertação]. Campinas: Unicamp; 2011.^,44 Dahl CM. Experiência, narrativa e intersubjetividade: o processo de restabelecimento ("recovery") na perspectiva de pessoas com diagnóstico de esquizofrenia em tratamento nos centros de atenção psicossocial [dissertação]. Campinas: Unicamp; 2012.. The term, purposely in quotation marks, signified that the recovery to which they referred was not synonymous with absolute remission of the disease and the recovery of a lost state upon onset³3 Lopes TS. Experiências e narrativas de psiquiatras trabalhadores de serviços públicos de saúde mental sobre a prática de cuidado da esquizofrenia [dissertação]. Campinas: Unicamp; 2011..

The motto Nothing about us without us, incorporated by this movement, refers to the struggles against apartheid in South Africa, when countless people engaged in resistance fronts suffered violence that caused physical disabilities. Around 1986, the organization of People with Disabilities of South Africa emerged, responsible for disseminating the slogan that gained wide social visibility⁵5 Sassaki RK. Nada sobre nós, sem nós: da integração à inclusão - parte 1. Rev Nacional Reabilitação 2007; 10(57):8-16..

In the national literature, recovery has been translated as restoration, recovery and overcoming⁵5 Sassaki RK. Nada sobre nós, sem nós: da integração à inclusão - parte 1. Rev Nacional Reabilitação 2007; 10(57):8-16.. In this article, we adopted the term “personal recovery”, identified in the Portuguese version of the document “Personal recovery and mental illness: A guide for mental health professionals”⁶6 Slade M. Personal recovery and mental illness: a guide for mental health professionals. Cambridge: Cambridge University Press; 2009., because it is a broad term, as proposed by mental health users and defended by Anthony⁷7 Anthony WA. Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosoc Rehab J 1993; 16(4):521-538., the seminal author of this discussion:

The World Health Organization (WHO) included personal recovery among the objectives of the Mental Health Action Plan 2013-2020⁸8 World Health Organization (WHO). Mental health action plan 2013-2020. Geneva: WHO; 2013., approaching it as a state of health to be promoted by services and as a dimension aligned with the personal and political strengthening of mental health among the population with mental health problems and psychosocial disabilities. Health systems and their services are called upon to incorporate this concept into their care practices.

In Brazil, since the 1970s, the Brazilian Psychiatric Reform Movement (BPR) has promoted the appreciation of the (inter)subjective experience in mental health care. The proposal to reinvent the clinic and politics has its most consistent elaboration in Psychosocial Care⁹9 Tenório F. A psicanálise e a clínica da Reforma Psiquiátrica. Rio de Janeiro: Rios Ambiciosos; 2001., advocating care in a network composed of a set of devices that must respond to the complexity of the conditions attended. Such devices go beyond the field of mental health, including health actions and services in general and public policies for social protection, art and culture¹⁰10 Delgado PGG. Saúde mental e direitos humanos: 10 anos da Lei 10.216/2001. Arq Bras Psicol 2011; 63(2):114-121..

It is a movement that is not without contradictions and setbacks, especially in recent years¹¹11 Delgado PGG. Reforma psiquiátrica: estratégias para resistir ao desmonte. Trab Educ Saude 2019; 17(2):e0021241.. In a scenario of political and epistemological disputes, Leal et al.¹²12 Leal EM, Marques JM, Moreira J, Costa S, Caridade E, Mendes M. Psicopatologia da autonomia: a importância do conhecimento psicopatológico nos novos dispositivos de assistência psiquiátrica. Rev Latinoam Psicopatol Fund 2006; 9(3):433-446. argue that descriptive psychopathology still has a strong influence on the way services understand illness and provide care. Used uncritically, this tool has produced harmful effects for the clinic, such as the lack of thematization about the relationship between the subject and his or her symptoms; the neglect of suffering that is not manifested through positive symptoms; and the elaboration of normalizing treatment proposals that do not require user participation.

In an attempt not to back down from the challenge of offering users a leading role in clinical practice, we link the theorization of physicians and philosopher Georges Canguilhem on the concept of health and studies on personal recovery. Canguilhem¹³13 Canguilhem G. É possível uma pedagogia da cura? In: Canguilhem G. Escritos sobre a medicina. Rio de Janeiro: Forense Universitária; 2005. p. 49-70. takes subjective experience as a basis to formulate the concept of health, noting that it should be thought of as an “organic state of which an individual considers himself the judge”¹³13 Canguilhem G. É possível uma pedagogia da cura? In: Canguilhem G. Escritos sobre a medicina. Rio de Janeiro: Forense Universitária; 2005. p. 49-70. (p. 57). In addition, health is related to the concept of vital normativity, considering healthy individuals capable of establishing and creating norms, new standards of functioning and ways of living¹⁴14 Canguilhem G. O normal e o patológico. Rio de Janeiro: Forense Universitária; 2009.. Health lies in the potentiality of this capacity and pathology in its restriction.

According to Canguilhem¹⁴14 Canguilhem G. O normal e o patológico. Rio de Janeiro: Forense Universitária; 2009., health concerns an individual’s margin of tolerance in relation to “infidelities in the environment”¹⁴14 Canguilhem G. O normal e o patológico. Rio de Janeiro: Forense Universitária; 2009. (p. 64), so that a funneling in this margin would produce a “direct and concrete feeling of suffering and powerlessness, a feeling of a frustrated life”¹⁴14 Canguilhem G. O normal e o patológico. Rio de Janeiro: Forense Universitária; 2009. (p. 44). Health supports disease and is not related to a state of equilibrium but to the dynamics that allow creating norms and responding to different situations. What characterizes a state as pathological is the conservative aspect given to the disease, the eminence of a conservative norm of life, which does not admit changes and imbalances. Illness is still a norm of life but an inferior norm because it does not tolerate deviations in its own condition.

Supported by this theoretical framework, we aimed to understand the process of personal recovery of people who have experiences related to severe mental disorders. Such studies face the challenge of valuing mental health users as citizens with rights and active participants in the processes of knowledge construction¹⁰10 Delgado PGG. Saúde mental e direitos humanos: 10 anos da Lei 10.216/2001. Arq Bras Psicol 2011; 63(2):114-121..

Method

Through a qualitative method, i.e., life narratives¹⁵15 Bertaux D. Narrativas de vida: a pesquisa e seus métodos. Natal/São Paulo: EDUFRN/Paulus; 2010., in-depth interviews were conducted with people who have experiences of personal recovery¹⁶16 Ribeiro EF, Vasconcelos SMF. A entrevista de narrativa de vida: uma abordagem que revela um gênero. Macabéa Rev Eletr Netlli 2020; 9(4):209-224.. The interviews were guided by a script composed of twenty-four open questions, arranged in 3 thematic blocks: (1) initial phase of illness and diagnosis; (2) cultural and socioeconomic factors that facilitate and hinder the recovery experience (social network, territorial resources, working life, education, family size, religiosity/spirituality, and self-recognition in terms of gender and race/color); and (3) public services, the role of health professionals and the state.

We interviewed five members of a collective of mental health users in a Brazilian metropolis. The choice of this group was intentional. This group consisted of people diagnosed with severe mental illness, all linked to a public institution that develops teaching, research and multidisciplinary and multiprofessional mental health care activities. The access route to these users was the collective itself - self-organized - and not the institution in which they are treated. The inclusion criteria for the study were being of legal age and being in a continuous process of psychosocial treatment. Psychosocial crisis at the time of the interview and the existence of legal protection were the exclusion criteria.

To access the participants of the collective, we contacted its coordinator via e-mail and, through her, scheduled a meeting with the group to present the study and reiterate the invitation to participate. After this meeting, which was attended by four members of the collective, the coordinator put us in contact with two more members. In the end, all interested people participated, totaling five.

The interest in an in-depth understanding of the subjective experience of each participant allowed us to design a study with a small number of subjects¹⁷17 Turato ER. Tratado de metodologia clínico-qualitativa. Petrópolis: Vozes; 2010.. Without the pretension of generalization, we believe that the results constitute an interesting source of dialog and clinical substrate for reflection on the diversity and scope of factors that involve experiences of personal recovery.

We conducted five in-depth interviews, two in person and three via a virtual platform, according to the preference of the interviewees. With an average duration of seventy minutes, the interviews were audio-recorded, and from them, life narratives were constructed. We understand narratives as the fruit of a dialog permeated by the questions we ask the interviewees and the way we listen to what they have to say, based on our listening and our presence. After this dialog, we wrote a text summarizing and organizing what was said in the interviews, and in a second meeting, we presented the summary to each interviewee.

Four of the five interviewees were interested in this second meeting, in which the intention was not only to validate the expressed content but also to create a new opportunity for the production of interventions, as Onocko-Campos suggests¹⁸18 Onocko-Campos RT. Fale com eles! O trabalho interpretativo e a produção de consenso na pesquisa qualitativa em saúde: inovações a partir de desenhos participativos. Physis 2011; 21(4):1269-1286.. Each of these four interviewees was attentive to the content that we read together, despite the long length of some life narratives (they were, on average, ten pages), producing interventions, suppressing content and/or grafting elements that they considered fundamental and that did not come to their mind at the time of the interview. Such interventions exceeded the changes in the text and produced effects on us. At one point while reading Pilar’s narrative, for example, one of the authors became emotional and was able to tell her that her story was a source of encouragement and optimism for the reader to deal with their own personal suffering. Listening to her, Pilar was also moved. Regarding the interviewee who was not interested in listening to the constructed narrative, we understand that he trusted our ability to listen to him, and we sought to honor his trust.

The analysis of the interviews was based on the hermeneutic approach¹⁹19 Gadamer H-G. Verdade e método. Petrópolis: Vozes; 1997., a framework that considers the effects of the (inter)subjective encounter between the interviewee and the interviewer, seeking to understand the meanings that the subjects attribute to their own experience in a process of negotiation between interlocutors²⁰20 Schwandt TA. Três posturas epistemológicas para a investigação qualitativa: interpretacionismo, hermenêutica e construcionismo social. In: Denzin NK, Lincoln YS, organizadores. O planejamento da pesquisa qualitativa: teorias e abordagens. Porto Alegre: Artmed; 2016. p. 193-219.. Thus, the established consensus considers and clarifies not only what the interviewee said but also the social, epistemological and affective place from which we heard the interviewee. This approach consists of the recognition of interconnected meanings, dependent on the context and traditions with which we work: the Canguilhemian theory of the health-disease process; the logic of psychosocial care; and theories about the notion of personal recovery.

Through the interaction between the scientific literature, the research objectives and the analysis of the narratives, we composed thematic cores organized into three axes: (1) facilitators of the personal recovery process and coping strategies for living it; (2) barriers to the personal recovery process; and (3) relationship with diagnosis.

This study was approved by the Research Ethics Committee of the institution to which the study is linked (opinion 5,381,051), and all subjects signed an informed consent form, in accordance with Resolution no. 466/12 of the National Health Council.

Results and discussion

Research subjects

Four interviewees identified themselves as men, two as white and two as mixed race. The participant who identified herself as black was the only woman to participate in the study. Regarding age, the youngest was a 45-year-old man, and the oldest was a 67-year-old man. Regarding education level, three participants had completed high school, and two had completed higher education.

All interviewees are called by fictitious names. Any data that could identify them were removed from the narratives. In the case of Tony, we did not omit the references to the names that refer to his artistic work, as this was his request, aligned with the desire to publicize his work.

Facilitators of the personal recovery process and coping strategies for living it

The experience with religion/spirituality proved to be important in the narratives. Filipe valued faith as a helping factor in the recovery process, and he was able to recognize that a religious leader helped him seek mental health treatment, pointing out that the issue he raised was not related to religion but to health. The narratives of Pilar and Humberto highlight the importance of the church as a space of social belonging, of spiritual comfort to be in communion with their brothers and sisters, as a Christian social group, and as a space to see people, worship God and chat.

In our view, the narratives of Pilar and Humberto evoke the concept of social support, studied by Valla, Guimarães and Lacerda²¹21 Valla VV, Guimarães MB, Lacerda A. Religiosidade, apoio social e cuidado integral à saúde - uma proposta de investigação voltada para as classes populares. In: Pinheiro R, Mattos RA, organizadores. Cuidado - as fronteiras da integralidade. Rio de Janeiro: Hucitec/Abrasco; 2004. p. 103-117., which values mutual help between people as a source of positive emotional and/or behavioral effects. Faced with contexts of deprivation and isolation in accessing services, the population has indicated therapeutic ways of dealing with their suffering, no longer restricted to the medical-therapeutic model but inserted in the category of social support, in which religious groups are included²¹21 Valla VV, Guimarães MB, Lacerda A. Religiosidade, apoio social e cuidado integral à saúde - uma proposta de investigação voltada para as classes populares. In: Pinheiro R, Mattos RA, organizadores. Cuidado - as fronteiras da integralidade. Rio de Janeiro: Hucitec/Abrasco; 2004. p. 103-117.. These groups can even collaborate in the care of people who need health services, as was the case with Filipe.

Continuing our research on the resources that facilitate personal recovery, we witness the importance of creative expression, as the following narrative shows us:

Tony’s experience reminds us of the approximation that Freud²²22 Freud S. O poeta e o fantasiar. In: Freud S. Arte, literatura e os artistas - obras incompletas de Sigmund Freud. Belo Horizonte: Autêntica; 2017. outlines between play and poetic activity, stating that in adult life, playing is transposed to artistic creation and the use of humor. In Winnicottian work, the creative act has a broader meaning than does artistic creation and can be approximated to the sense of Canguilhemian normativity insofar as it is characterized as “a coloring of every attitude towards reality”, an act of creation in relation to external reality²³23 Winnicott DW. A criatividade e suas origens.In: Winnicott DW. O brincar e a realidade. São Paulo: Imago; 1975. p. 95-120. (p. 95). Playing with words, Tony seems to have managed to be normative, to facilitate health and thus avoid crises.

All respondents point out that an important resource for personal recovery is their good bond with the reference institution, which in their view, offers multiple opportunities for comprehensive care. Tony added the importance of other spaces, such as the Center for Coexistence and Culture, which is in a fragile phase due to the lack of funding:

We noticed that despite the institutional impasses, which will be mentioned below, the institution to which these subjects are linked remains a firm foundation and reference for care. The service functions as a concrete anchor, with strong subjective repercussions for the subjects, fulfilling what is expected of services that replace asylums, that is, care that can be offered intensively, with a multidisciplinary team with access to diversified clinical tools⁹9 Tenório F. A psicanálise e a clínica da Reforma Psiquiátrica. Rio de Janeiro: Rios Ambiciosos; 2001.. The institution is a reference and has been allowing these subjects to find in it the stability necessary to continue in their personal journeys, and in this sense, it contributes to reaffirming the responsibility of the state for promoting actions in the field of mental health that positively affect living conditions and health. However, referencing Dias²⁴24 Dias MK. A experiência social da psicose no contexto de um Centro de Atenção Psicossocial. Cien Saude Colet 2011; 16(4):2155-2164., one must ask whether the centrality that a single institution can assume does not limit the construction of other bonds, restricting the possibilities of a more varied network of dependencies that are essential for health²⁵25 Onocko-Campos RT, Campos GWS. Co-construção de autonomia: o sujeito em questão. In: Akerman M, Campos GWS, Carvalho YM, Drumond Junior M, Minayo MCS, organizadores. Tratado de saúde coletiva. São Paulo: Hucitec; 2006. p. 669-688.. The example of Pilar awakens us to this theme, as she tells us that she only sought a family clinic when she was prevented, due to the pandemic, from going to a reference service for mental health care. Faced with this impossibility, she found more treatment resources, this time closer to home.

Another important aspect of the personal recovery process is what, in the field of psychosocial rehabilitation, Tykanori²⁶26 Tykanori RK. Contratualidade e reabilitação psicossocial. In: Pitta A, organizador. Reabilitação psicossocial no Brasil. São Paulo: Hucitec; 2016. p. 69-74. calls the increase in the user’s contractual power, that is, their ability to exchange material and immaterial goods with their social environment. Humberto’s experience embodies this theorization:

Humberto seems to work toward his psychosocial rehabilitation and the increase in his contractual power, predominantly through his work as a volunteer. This does not exempt him from worrying about his financial life, with the possibility of not receiving this benefit if he gets married, something he very much wants. In addition, he recognizes the probability of encountering difficulties if he needs to enter the formal job market.

Dilemmas and difficulties related to working life also appear in Daniel’s narrative, in addition to the “impasse” of receiving his father’s pension, which is his source of income:

Safatle²⁷27 Safatle V. A economia é a continuação da psicologia por outros meios: sofrimento psíquico e o neoliberalismo como economia moral. In: Safatle V, Silva Júnior N, Dunker C, organizadores. Neoliberalismo como gestão do sofrimento psíquico. Belo Horizonte: Autêntica; 2021. p. 11-38. discusses the view of the subject within neoliberal logic as an “objectified” view, with little attention to the recognition of singularities. This view recognizes the psychologization of life but suggests that it is purposely engendered to respond to the model of productivity, functionality and consumption²⁷27 Safatle V. A economia é a continuação da psicologia por outros meios: sofrimento psíquico e o neoliberalismo como economia moral. In: Safatle V, Silva Júnior N, Dunker C, organizadores. Neoliberalismo como gestão do sofrimento psíquico. Belo Horizonte: Autêntica; 2021. p. 11-38.. In Daniel’s narrative, we see a concern regarding responding to this productivist model. Daniel does not seem to recognize the challenges of a person dealing with intense mental suffering, reading everything he “failed to do” from the perspective of a “tendency to idleness” and the fact that he “does not want to take the initiative to look for a job”; as he indicates, he is accustomed to the modes of neoliberal subjectivation discussed by Safatle²⁷27 Safatle V. A economia é a continuação da psicologia por outros meios: sofrimento psíquico e o neoliberalismo como economia moral. In: Safatle V, Silva Júnior N, Dunker C, organizadores. Neoliberalismo como gestão do sofrimento psíquico. Belo Horizonte: Autêntica; 2021. p. 11-38..

Barriers to the personal recovery process

There were many reports of barriers created by professionals to the process of personal recovery. Tony expressed difficulty in negotiating adjustments to medication dose:

Tony’s narrative reminds us that despite the advances with the new model of mental health care, we face many challenges for an effective change in the practice of care because although the problematization of the primacy of pharmacological treatment has space in the mental health debate²⁸28 Santos DVD, Reis ACS, Silva EM, Lima V, Salomão J. A gestão autônoma da medicação em Centros de Atenção Psicossocial de Curitiba (PR). Saude Debate 2021; 44(Esp. 3):170-183., approaches that reduce treatment to the administration of psychotropic drugs persist.

Onocko Campos et al.²⁹29 Onocko-Campos RT, Passos E, Palombini AL, Santos DV, Stefanello S, Lamas LG, Andrade PM, Borges LR. A Gestão autônoma da medicação: uma intervenção analisadora de serviços em saúde mental. Cien Saude Colet 2013; 18(10):2889-2898. show the problems in the relationship between prescribing physicians and users in a study conducted in three Brazilian capitals; the difficulty of users to talk to doctors about drug treatment and the tendency to see the prescriber in a place of inaccessible authority were evidenced.

These results are different from those found by Serpa Jr. et al.³⁰30 Serpa Junior OD, Campos RO, Malajovich N, Pitta AM, Diaz AG, Dahl C, Leal E. Experiência, narrativa e conhecimento: a perspectiva do psiquiatra e a do usuário. Physis 2014; 24(4):1053-1075., whose study developed with patients diagnosed with schizophrenia showed that these patients do not always use drugs as prescribed by psychiatrists, managing the dosage in their own way until they find a dose that satisfies them. However, the interviewed psychiatrists recognize this practice and say they are available to negotiate and review prescriptions with users³⁰30 Serpa Junior OD, Campos RO, Malajovich N, Pitta AM, Diaz AG, Dahl C, Leal E. Experiência, narrativa e conhecimento: a perspectiva do psiquiatra e a do usuário. Physis 2014; 24(4):1053-1075..

Humberto brings up the centrality of the doctor/health professional-patient relationship to the course of treatment:

Balint³¹31 Balint M. O médico, seu paciente e a doença. Rio de Janeiro/São Paulo: Livraria Atheneu; 1984. was a forerunner in the discussion about the importance of the affective dimension, of exchange and of the relationship between professional and patient by stating that the personality of the physician and his or her relationship with the one to whom he or she directs his or her care have important effects on treatment - both positive and negative. For this author, sometimes the doctor is the medicine itself, and in regard to medicines, occasionally, the way it is offered is more important than what is offered³¹31 Balint M. O médico, seu paciente e a doença. Rio de Janeiro/São Paulo: Livraria Atheneu; 1984..

To investigate the importance of the affective dimension, Peixoto, Mourão and Serpa Jr.³²32 Peixoto MM, Mourão ACN, Serpa Jr. OD. O encontro com a perspectiva do outro: empatia na relação entre psiquiatras e pessoas com diagnóstico de esquizofrenia. Cien Saude Colet 2016; 21(3):881-890. conducted focus groups with psychiatrists and people diagnosed with schizophrenia in two Brazilian cities and reported that for psychiatrists, bonding is an important ally for treatment; its absence implies difficulties in clinical interventions.

Barriers to personal recovery arising from injustices related to gender and race were also present in other narratives, such as that of Pilar, who simultaneously exposes the two intertwined elements:

Pilar is correct; there is great gender inequality in Brazil. The Brazilian Institute of Statistical Geography³³33 Instituto Brasileiro de Geografia e Estatística (IBGE). Pesquisa nacional por amostra de domicílios contínua: PNAD Contínua. Rio de Janeiro: IBGE; 2022. estimates that in 2022, women represented 44% of the workforce; however, 55% were unemployed. The unemployment rate was also higher for women (11%) than for men (6.9%). Regarding the average salary of each gender, men earn 22% more than women³³33 Instituto Brasileiro de Geografia e Estatística (IBGE). Pesquisa nacional por amostra de domicílios contínua: PNAD Contínua. Rio de Janeiro: IBGE; 2022..

Regarding the racial dimension indicated by Pilar, we reference Silva and Garcia³⁴34 Silva TDM, Garcia MRV. Mulheres e loucura: a (des)institucionalização e as (re)invenções do feminino na saúde mental. Psicol Pesqui 2019; 13(1):42-52. and agree that “to be anti-asylum is to aim to break with all the paradigms present in a markedly asylum society but also racist and misogynist” (p. 51), which should induce the production of policies in which race, gender and mental health are articulated.

In the field of health policies, the formulation of the National Policy for the Comprehensive Health of the Black Population, published in 2010 and the creation of the Racism and Mental Health Working Group in 2014 stand out. This movement is based on the recognition that racism is one of the determinants of the integral health of the black population and the understanding that their living conditions result from unfair social, cultural and economic processes present in the history of Brazil³⁵35 Brasil. Ministério da Saúde (MS). Política Nacional de Saúde Integral da População Negra: uma política do SUS. Brasília: MS; 2010.. It is possible that the effects of these policies did not directly affect Pilar’s experience of personal recovery, but public policies that consider social complexity and assume, in their formulation, intersectionality as a guideline may support groups and individuals experiencing similar situations.

The marks of social injustice, patriarchy and coloniality favor stigma and prejudice toward people facing mental health issues. However, Pilar invites us to think about the skills we develop to deal with difficult situations and about the importance of thinking about the way our patients will manage their lives in the world, outside the spaces of care:

It is interesting that Pilar credits her recovery process to the possibility of better dealing with stigma and exercising patience. This is an aspect addressed by Davidson et al.³⁶36 Davidson L, O'Connell M, Tondora J, Lawless MS, Evans AC. Recovery in serious mental illness: a new wine or just a new bottle? Prof Psychol Res Pract 2005; 36(5):480-487., who include overcoming stigma among the elements that comprise personal recovery. Similarly, among the strategies proposed by the “Plan of Action in Mental Health 2013-2020” developed by the WHO is the fight against stigma and social discrimination aimed at mental health⁸8 World Health Organization (WHO). Mental health action plan 2013-2020. Geneva: WHO; 2013..

Relationship with diagnosis

Diagnostic imprecision is noted in Tony’s narrative:

The “lack of certainty” reported by Tony, often associated with diagnostic imprecision, does not necessarily result from medical incompetence or a lack of medical knowledge, as it involves a complexity of factors that we could group under the term intersubjectivity. This refers to the interdependence between each person and the sociocultural, political, ethical and material environment in which they live.

Although diagnostic manuals propose to objectify subjectivity, often the symptomatic manifestations do not fit the descriptions, and therefore, it is worth following the Canguilhemian recommendation for health professionals to behave more like exegetes than repairers ³⁷37 Canguilhem G. A saúde: conceito vulgar e questão filosófica. In: Canguilhem G. Escritos sobre a medicina. Rio de Janeiro: Forense Universitária; 2005., supporting patients in the construction of a narrative about their own experience and accompanying them on the journey of personal recovery. Therefore, we believe that clinical tools that are more sensitive to pathos are needed, as proposed by Serpa Jr.³⁸38 Serpa Jr OD. Subjetividade, valor e corporeidade: os desafios da psicopatologia. In: Silva Filho JF, organizador. Psicopatologia hoje. Rio de Janeiro: Contra Capa Livraria; 2007. p. 63-81., who propose that the axis of psychopathology is subjectivity - always connected with the world - which he named first-person psychopathology³⁸38 Serpa Jr OD. Subjetividade, valor e corporeidade: os desafios da psicopatologia. In: Silva Filho JF, organizador. Psicopatologia hoje. Rio de Janeiro: Contra Capa Livraria; 2007. p. 63-81..

Some subjects perceive their subjective experience as unrelated to a formal diagnosis. Humberto’s understanding of schizophrenia illustrates well what we mean, as he is able to grasp, from the words “schizophrenia” and “paranoid”, what he experiences:

When talking about his diagnosis, Humberto presents an account of personal recovery that incorporates both the feeling of indignation with the illness and the feeling of progressive acceptance, as he discovers himself potentially capable of doing things that give him pleasure and is able to live with what he calls “this psychopathology”.

Tony, on the other hand, at a certain point in the interview, says something that goes beyond the perception expressed in the comments he had made regarding his diagnosis or, rather, the absence of an accurate diagnosis, saying: “I do not seek to know what I have but to understand how I am”. His lack of interest in the nosological category in which he is being included gives way to the effort to understand who he is, thus expanding his possibilities of existence. “To understand how I am” is something broader that involves but exceeds illness, reminding us of Canguilhem, for whom life does not recognize the categories of health and illness in the realm of science but only in the “plan of experience, that is, first, probation in the affective sense of the term (...) in a way that science can classify the experience but will not cancel out the embodied experience and the personal attempt to understand it”¹³13 Canguilhem G. É possível uma pedagogia da cura? In: Canguilhem G. Escritos sobre a medicina. Rio de Janeiro: Forense Universitária; 2005. p. 49-70. (p. 65).

Tony also makes a very important statement that perhaps explains his lack of focus around the “name” that says what he has. It reminds us that the diagnosis often brings stigma and guilt, which can reinforce illness as a solipsistic experience, whose prevention and overcoming are the responsibility of the individual, the consumer of biomedical technologies²⁷27 Safatle V. A economia é a continuação da psicologia por outros meios: sofrimento psíquico e o neoliberalismo como economia moral. In: Safatle V, Silva Júnior N, Dunker C, organizadores. Neoliberalismo como gestão do sofrimento psíquico. Belo Horizonte: Autêntica; 2021. p. 11-38..

Final remarks

We sought to assess the experience of subjects capable of elaborating unique ways of experiencing their recovery, revealing the importance of intersubjective resources such as creative outlets and the opportunity to work as formal employees or volunteers. Other elements that were included in the personal recovery journeys were religious institutions, health services, professional practice and cultural spaces. However, these same elements can constitute barriers to a creative existence because social norms intersect the stigma that accompanies mental health and because of the power relations in the professional field. Therefore, it is necessary to strengthen public policies capable of confronting this stigmatization and centralization of biomedical power, continuously discussing the paths of care. Consistent with the precepts of the field of study of personal recovery, these policies cannot be established despite the voice, narrative, and embodied experiences of users.

The research process constituted a listening and speaking experience for the researchers and interviewees. We listened to users’ elaborations about their personal recovery process. However, they also listened to the narratives that we constructed about their interviews, dialoguing with our way of organizing and understanding the discourse, in a process of joint and participatory construction. Finally, we seek to value the social foundations that need to be strengthened in mental health care processes that incorporate the experience of illness or impediments to enjoyment of life as characteristics of human living and open more diverse and powerful networks of exchange for care.

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