Edited by: Christian Franceschini, University of Parma, Italy
Reviewed by: Jozsef Racz, Eötvös Loránd University, Hungary; Andrea Seganti, Independent Researcher, Rome, Italy
This article was submitted to Psychology for Clinical Settings, a section of the journal Frontiers in Psychology
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Love is a universal experience that most people desire. A serious, long-term, and stigmatized illness makes entering and maintaining close relationships difficult, however. Ten persons, who have been diagnosed with schizophrenia, and lived with their illness for between years and decades of their lifetimes, shared their stories. They reported how the illness has influenced their emotional experiences regarding love and their intimate relationship experiences. We present here a qualitative interpretative phenomenological analysis (IPA) of their narratives. This analysis has been done with an explicit intention to give voice to the patient’s perspective. The results highlight how illness adjustment and hospitalizations have an alienating effect on relationships through stigmatization and self-stigmatization; how illness creates psychological obstacles to love, such as diminished trust toward oneself and others; and how long-term patients experience practical difficulties in creating and sustaining relationships, such as poverty. Moreover, we show how patients experience changes in sexuality and the risks involved in it and discuss possible coping strategies from their perspectives.
Love is a universal experience that most people desire. A serious, long-term illness, like schizophrenia, introduces a set of specific obstacles for entering and maintaining close relationships, however. To tell the story of love, and what happens to it, when someone is also burdened with psychosis, is an exercise that requires a great deal of courage. Ten patients, who have been diagnosed with schizophrenia, and lived with their illness for a period of between years and decades of their lifetimes, shared their stories. They reported how the illness has influenced their emotional experiences and life trajectories. We present a qualitative interpretative phenomenological analysis (IPA) of their narratives. This analysis has been done with an explicit intention to give voice to the patient’s perspective. Presenting this perspective in a systematic way can help medical professionals to understand the lived experiences and the context of the illness. Love, through the creation of meaningful relationships, stable support networks, community participation patterns, and life goals is a central, yet often overlooked, aspect to the trajectories of illness and recovery.
Love is one of the universal themes of humankind, reflected in many cultural narratives and personal stories. In the context of romantic relationships, finding a partner and starting a family is one of the common goals for young people and a developmental milestone in the course of life (
Love is more than just passion, sexual desire, and erotic fascination expressed in romantic relationships. Apart from erotic feeling (
The desire for love, meaningful personal relationships, romance, and family is well documented in persons with schizophrenia (
In an extensive qualitative study,
“Bottom of the totem pole, very lowest of the low, scum of the earth”—this is how one of the participants with the experience of psychosis in a study by
The objective of the interpretative phenomenological analysis (IPA) is to gather a rich and in-depth understanding of how individuals experience a particular phenomenon, and then to understand and interpret this experience as it is shared within a small group of participants (
The participants in this study were 5 women and 5 men, each of whom had experienced severe mental illness and had a medical diagnosis of schizophrenia. At the time of the interview, six of them were patients in an outpatient psychiatric clinic in Warsaw, which represents an urban mental health institution within a public health system. One participant was a member of a patients’ club at the clinic, and another was a member of a support group for individuals with mental illnesses associated with the clinic. The last two participants were members of social networks comprised of prior participants of this study. All participants were under ongoing care of psychological and psychiatric professionals and received medical and, in some cases, psychological treatment. No participant was in the acute stage of his or her illness at the time of the study, but all had earlier in-patient experiences. The mean age of participants was 34.4 (
We used a semi-structured interview protocol, involving introductory general questions about understanding love, questions about life and emotional experiences in relationships, hopes, and the perceived impact of illness on relationships. This protocol was then employed as in-depth interview, in accordance with the IPA method (
A major outpatient psychiatric clinic in Poland allowed for the participants’ recruitment. The inclusion criteria were as follows: being diagnosed with schizophrenia and having an experience of psychosis, and not being in an acute phase of illness. The research project and interview protocol received the institutional approval of the ethical committee prior to the study. Ethical guidelines followed were consistent with American Psychological Association research ethics recommendations (all authors are psychologists) and included informed consent, including publication of social and demographic characteristics of the study group and using direct quotes from the participants; the right to withdraw from the study at any moment; recording; and recorded data safety regulations. [KW] conducted all interviews personally, choosing the time and place at the patients’ convenience. All interviews were tape-recorded and transcribed verbatim. These lasted between 40 min and 1 h 35 min.
After a familiarization phase, and discussion between authors, who were first making preliminary notes and comparing and discussing their insights, the first author performed a systematic analysis. She started with notes and preliminary emerging themes and then refined and corrected initial insights through an iterative analytic process, to create a set of subthemes and main themes to higher levels of abstraction. Additionally, this set of themes was applied to the text and checked line by line against the transcripts in order to evaluate how well they reflect the material. The analysis was subsequently reviewed by two other authors and developed further, as their insights were incorporated into the analysis. This process resulted—after a few review and discussion phases—in all authors’ agreement about the final analysis, as well as the final written report. The procedure was similar to that described by
The following concerns regarding qualitative research transparency and quality were taken into account. First, we guided all study procedures in line with the study’s goals, which concern understanding individual experiences. Second, we take a phenomenological perspective as epistemology and use interpretative phenomenological analysis. Thus, during the text analysis, we focus more on participants’ subjective perspective and the meanings attached to the experiences than on factual content. Consequently, we paid attention to each participant’s experiential truth and were aware of the way in which it was communicated in relationship to the listener. We avoided over-generalizing similarities and purposely paid attention to the individual aspect of experiences. Moreover, we report the result in a personalized manner, linking stories to persons and giving voice to the participants. The analysis was done in a systematic way and reviewed both inside and outside the research team. We engaged in self-reflexivity and report this in the discussion section. A quality criterion in our type of research must be relevant for practitioners, so we aimed at communicating our results in a manner to be transferable and applicable in different contexts. The general principles regarding quality are similar to the general overview proposed by
Five salient themes were created from the interviews.
Master themes and subthemes in interviews.
(1) | Illness adjustment is all-consuming at first and can lead to isolation | Identity work and adjustment |
Impact of first hospitalizations | ||
(2) | Inner obstacles: illness-induced changes in experiencing love can be obstacles to entering and maintaining romantic relationships | Intimacy and emotions |
Inner chaos, disorientation, difficulties in understanding others’ intentions |
||
Suspicions and distrust | ||
(3) | External obstacles: low status, discrimination, and poverty make it difficult to establish and maintain close relationships | Low status and discrimination |
Poverty |
||
Physical appearance | ||
(4) | Experiencing sexuality becomes more challenging | Lowered trust in self and others |
Women’s experiences: risk of sexual abuse and need for stable relationships |
||
Men’s experiences: romantic ideals and competition |
||
Voluntary sexual abstinence | ||
(5) | Ways of coping | Love is understood as a universal value |
Other objects of love |
||
Loneliness |
||
Expectations for the future |
In the participants’ memory, the theme of illness onset stands out, together with the need to adjust to new life situations and the impact of first hospitalizations. The onset of schizophrenia was a cutoff point of their narratives, separating their lives into “before” and “after” landmarks. It was related not only to their personal lives but also to their histories of love and romantic relationships.
For many participants, the experience of psychosis resulted in the need for a redefinition of the self-image and their image of the world. Alice, a woman in her late twenties, notices and expresses the change in herself and the resulting need for identity work the following way:
First-time illness experiences seem to pull patients out of the world of interpersonal relationships and drag them into loneliness.
In addition to the need to adapt to the illness, the patients’ narratives exhibited another theme—the theme of the first hospitalization. They name it as a factor that most strongly pulls them out of their contemporary lives, including their relationships, and most strongly stigmatizes them. It also can provoke self-stigmatization. James, a young man in his early twenties, stated:
James was left by his long-term girlfriend after he was released from the psychiatric ward.
Several participants experienced the severing of both romantic relationships and friendships during the first hospitalization, or some time later. Either the patients were isolating themselves from their loved ones as the psychosis progressed or their partners were leaving some time after the onset, scared off by the illness and its consequences.
Psychosis entails experiences unknown or alien to other people. The second theme in the participants’ narrations was the theme of the consequences of such experiences on the romantic relationships.
The influence of positive symptoms (for example hearing voices) on the world of thoughts and emotions is an intense and personal experience. Delusions of influence and control (I’m controlling things or being controlled by someone), the idea that others could hear my thoughts and I could hear theirs, share a common theme of blurring the psychological boundaries, the distinction between oneself and the external world or another person. In consequence, romantic relationships may be experienced as a sort of fusion, which can at once be both alluring and unsettling. Alice describes this:
The desire for intimacy and closeness is a deep-seated need. For Alice, the intense experiences associated with psychosis stand in stark contrast to her normal life and the relationships in it, relationships that do not have the same immediacy and intensity.
However, not all patients experience their symptoms as something to be shared with their partners—the unusual character of the experiences can also lead to secrecy. The intimacy of the patients’ relationships to their symptoms, the personal nature of the symptoms, and the distrust that comes with certain forms of schizophrenia can all preclude any communication on this topic within a relationship. John mentioned when talking about his former partner:
The theme of experiencing closeness with another person co-occurs with the theme of a perceptible change in experiencing emotions. Alice, again: “
Chaos and disorientation often accompany psychosis. For example, in an interview with Emily, a woman in her forties, the sense of disorientation and chaos dominates the conversation. Her love story begins like:
Within her own love story, rich in hedges, question marks, and linguistic expressions of uncertainty, she talks about guessing her lover’s intentions rather than knowing them. Emily’s long story about love is missing many important details. The listener does not know what happened and when. She, herself, is also confused about the actual meaning of her story. Other patients’ narratives also highlighted that the effort put into making sense of the fragmented experience, including sexual experience, can be remarkable.
Interpreting one’s own experiences during psychosis is made even harder by the fact that positive symptoms frequently inject unsettling and threatening inputs that are difficult to assimilate and which inundate the person with images of aggression and violence. Eva, a woman in her mid-thirties, has been ill for all of her adult life. In her interview, there were frequent motifs of rape, violence, and sexual abuse that, in her mind, were constantly happening to many people around her. She assigns such sequences of events to the man she loves, saying:
In her life story and that of all who are close to her, the motif of rape appears dozens of times. It is difficult to think of interpersonal relations as a source of support and satisfaction when such threatening thoughts overflow the consciousness. The blending of experiences and symptoms, along with the frequent paranoid component of the illness, can result in the emergence of deep mistrust. Suspicions, anxiety, and fear can affect the patient’s attitude toward love. Negative expectations often characterized the participants’ narratives.
Internal obstacles are not the only challenges faced by the study participants. The external reality of living with an illness can be just as challenging.
Persons with long-term mental illness commonly experience social stigma, along with self-stigmatization. They are not seen, nor do they see themselves as attractive partners in romantic relations. Martha, a middle-aged woman with a nearly 20-year history of being ill, describes recurring experiences of romantic rejection due to the illness. Her relationships were often short-term, and primarily sexual. Despite her desire for a long-term relationship, the men always left her. Even though her consecutive partners were rather unattractive men—described, among others, as an alcoholic met on the street, and a penniless drug addict who wanted to use her for her disability benefits—her status as a mental health patient inevitably resulted in the termination of the relationship.
The study participants often expressed an understanding that the illness can pose a great challenge for potential partners but that understanding does not make the rejection any less painful. Informing potential partners about the illness was an important issue, where the problem was in choosing an appropriate moment to confess to it. The perceived risk of rejection is very high.
The theme of the low status of mental health patients, especially those suffering from psychosis, is angrily, but also with sharp irony, described by Jack, the longest-suffering of all of the male participants. He expresses his pride and dignity—despite hardships and deficiencies—through distancing himself from society and openly expressing his anger at the social status of the mentally ill. For example, when asked where he would take a girl on a date, he says:
Stigmatization, self-stigmatization, unattractiveness, and rejection in romantic relations are caused not only by the illness itself but, according to a few participants, are also greatly amplified through poverty—a consequence of the illness. Poverty makes any romantic relationship difficult. Eva describes an early relationship:
Currently, the frequency of Eva’s social outings and interactions—both romantic with her special friend and non-romantic with her other friends—is determined by the contents of her wallet. She self-identifies with poverty, for example she believes that most men see her primarily and first as a poor person, and this makes her an unattractive partner, even if the theme of illness does not come up. After years of illness, it is the poverty, not the illness, that consumes a lot of space in her everyday stories and has the greatest impact on her day-to-day life and her romantic possibilities.
What Roman thinks is that his situation would be much better if he could work: “
Medication-related weight gain is a problem for most of the men and women who suffer from this negative consequence, as it adds to their stigmatization in a particularly painful way. Obese individuals in Western culture are viewed as romantically unattractive, and if someone is ill and poor, and also obese, their social status is critically low. Such individuals can be met with disdain and be the target of hate speech. Among the women, Eva, who was slender as a teenager and later gained a lot of weight due to many years of pharmacotherapy, most clearly and bitterly expressed the motif of physical attractiveness. She speaks about her romantic friendship: “
Cultural messages related to sexual relations are many, frequently contradictory, and variable in time and setting. We divided the theme of experiencing sexuality as narrated by participants into four sub-themes.
At different stages of the illness, patients can be aware that their behavior could be changed. Sometimes, though not frequently, this involves sexuality. Witnessing other patients’ behaviors in the psychiatric ward can make trusting oneself and others more difficult.
Martha tells a story about episodes of brief sexual encounters with various men during her illness:
Martha’s full story is that of a young woman fondly recalling romantic love before the onset of her illness, and then describing various sometimes frightening experiences during her illness, and accepting her current lowered libido. It introduces the next theme, characteristic for most of the female participants. It deals with how the patients perceive the risk of sexual abuse of an ill woman by men.
Three out of five of the female participants described situations which they eventually came to consider as abuse. Each of them desired love and pursued a long-term close relationship but experienced rather short-term relations based primarily on sexuality. What is striking in these narrations is the disproportionality of the women’s dreams and desires versus how their relations with men happened in reality, as well as the imbalance of power in the relationships. For example, the imbalance pertained to age—where a man was much older, and the woman was teenage and ill, or with a difference in health status and ability to think critically.
This is how Emily describes her submissiveness toward a mentally healthy and much older partner, with whom she was in love at one point:
Despite this, it took her a long time before she terminated this relationship; it was difficult for Emily to trust her feelings and to determine if the relationship she was in was loving or abusive. Her family and the people around her had no doubts that she was being abused, but her own inner experience is colored by confusion, by the hope for love, and by the bitter realization that she was offered only a much less meaningful experience. Such experiences can discourage sexuality in any form.
In various situations, the female participants referred to their own sexual needs, which varied throughout different periods of their lives, sometimes clear and strong, sometimes suppressed by medication. Illness made it difficult to satisfy those needs in a way that would match their desires, fantasies, or values.
While women’s narratives on sexuality were complex, elaborate, and varied, men’s narratives were shorter and less open. It is important to note that the interview conditions were not equivalent for the male and female participants because all interviews were conducted by a young female interviewer. This could act as a limitation in the case of male participants, but an advantage for female participants, who may in turn feel safer while expressing their sexual experiences. In the interviews with male participants, the motif of sexuality was narratively linked with awareness of their low social status. This evoked the theme of competition with other men. Participants also spoke about difficulties in managing jealousy.
For example, Jack says that his 2-week-long love “vanished” and that he would rather “it better not come back.” For him, love is associated with risks and aggression, both expressed and experienced. When the object of his affection chose another man—also a patient—at a club, Jack reacted with aggression toward both of them, for which he was thrown out of the club: “
His thoughts about a future relationship are colored by suspicions that the partner would cheat on him. Therefore, he sums it all up with the saying: “
The brutality of the rivalry for sexual relations with women in the narratives of longer-suffering respondents stands in contrast to the stories of more-recently diagnosed participants. The latter focus on their ideals—long-term, harmonious, loving relationships with women. Those are the relationships which they seek and dream of, despite having experienced plenty of rejection. For them, love is an ideal, but the naked reality they experience can be unforgiving.
Another theme which appeared in the narrations concerning sexuality was that of voluntary sexual abstinence, frequently associated with giving up, entirely or temporarily, on the search for new relationships. One of the reasons is medication, whose side effects include libido suppression. Alice:
For some of the participants, sexuality is very important, and yet they choose abstinence, despite having sexual needs. For a few of the participants, the choice was motivated by religious beliefs. They did not want to have casual or extramarital relations, and the other kinds were not available to them; and in their solitude, religion was an important source of support. Such motifs appeared in the narrations of three of the five female participants. Women also spoke about the need for abstinence arising from disillusionment with their past experiences and the excessively high perceived risk associated with this aspect of life.
Both the need for love and the difficulties in finding it and building a lasting relationship are seen by our patients as universal experiences, and not just through the lens of their illness; on the contrary, they are seen as part of the human condition.
Bella has been ill for 4 years and is now in her forties. She is divorced and recalls that many of her healthy friends back from when they were schoolmates are now divorced, as well. She believes that the fact that love does not work out is just the human condition. Not only the ill are lonely; for her, loneliness and rejection are a part of destiny, especially women’s destiny. When an ill person faces loneliness or abandonment, her or his fate is shared with many people before them, including healthy people.
Most participants’ narratives reveal a strong belief that love is one of the most important values in—and gives meaning to—life. However, romantic and erotic love is viewed neither as the only nor as the most important kind of love. Several participants point out spiritual values. Eva names agape her ideal of love:
Many of the participants talk about objects of love, who—as they put it—“substitute for” or “fill the gap” caused by the lack of a partner, and who may fulfill the patients’ needs frustrated due to the lack a romantic partner. For some of them, that person is their mother. For example, Jack, when asked what love is the most important to him, answers without a second thought: “
These types of responses are common—relations with objects of love, parents, relatives, friends, and in some cases, God, are an opportunity to give and to express love, but are also mutual and can satisfy the patients’ basic needs. Alice:
The clear presence of religious coping in four of the ten narratives is noteworthy. Spiritual needs are expressed, and a relationship with God was identified explicitly as important in this regard. Martha:
Despite the above, the participants still experience loneliness. James:
The participants’ expectations for their futures varied widely. John is making an active effort to find love:
Harry is also actively working on self-improvement. He has achieved a measure of success in physical fitness—for some time now, he has been jogging regularly (to lose weight and stay in shape)—and he also wants to work on his financial stability to be able to use these as a basis for a long-term relationship. Oliver also has hopes for the future and wishes to find a stable relationship. In contrast, Alice believes it is possible to maintain lasting and close relationships full of love and acceptance only if they existed before the onset of the illness, but she is critical of relationships initiated during illness. She believes that she has changed inside, so much that she will probably never be personally ready for love.
In general, the narratives of younger patients with a shorter history of illness expressed more hope for future relationships, while longer-suffering patients were less optimistic in their expectations.
The common theme for persons in this study in the context of psychosis and love relationships was the need to adapt to the illness. Illness onset was often a turning point for their previous relationships and challenged the identities which they had before the onset of illness. Illness onset seems to be a time that puts a special strain on interpersonal relationships, including love relationships. There was a need to deal with the stigma associated with being an in-patient at a psychiatric hospital, as this stigma sometimes becomes a personal identity label (
Stigmatization processes, and especially the harmful impact of institutionalization, were subject to very lively debate within the anti-psychiatry movement (
Love relationships were perceived by participants as made more complicated by internal obstacles caused by their illness. What is described in the literature as deficits in emotional, cognitive, and social skills (
External difficulties were another common feature for the participants’ experiences. The discrimination and stigma of mental illness caused most of them to experience rejection in relationships. The significance of poverty concerning practical possibilities of love and romance was striking and grew with time, being the strongest factor in persons who have been ill for an extended time. This corresponds to the conclusions from population data (
Sexuality is one of the areas where many unmet needs are reported by the patients, when it comes to treatment and psychiatric care (
All participants expressed needs related to love, but some also spoke about a lack of readiness or hope for a romantic relationship, especially if it were to be sexual as well. The stories of various difficulties are also a subtle portrayal of the strategies for overcoming them. This can be seen, among other forms, in the ways in which our participants communicated: it features humor, pensiveness, altruism, distance, spirituality, sensitivity, understanding, and acceptance. Love as a need to give of oneself was expressed through helping others, especially other chronically ill individuals through support groups. Even individuals whose illness severely limited them spoke about the need to give of themselves, if only through physical labor, or contributing to the public good in other ways, however, small.
Thinking about psychiatric healthcare in terms of recovery-oriented practice (
To sum up: the understanding of love within our group of participants shares features that are universal for human experiences of love. This applies to the expression of the need for love in several dimensions—love as an abstract, to love, and to be loved, which matters significantly, and can be a decisive factor in determining the course of one’s life. Also, cultural values and expectations are usually shared, most notably the value of stable loving relationships, which last over a lifetime and provide mutual support and are rich, genuine feelings for each other. The understanding of love also shares some features with other group experiences, such as those who endure long-term illness, poverty, or discrimination and stigmatization. These experiences are expressed in a shared vulnerability, which makes love more difficult to achieve, but also for the same reason more valued and nuanced in its expression, as effort is required to maintain and grow relationships against external hardship. The very experience of psychosis adds another layer to these common stories of the struggle for love. It taps deeply into the sense of person’s identity, thus risking self-stigma and renouncement or avoidance of relationships. It shakes the sense of trust toward one’s own judgment, own thoughts, desires, and sexuality, as experienced by the participants of our study. It also sometimes produces distinct, intense experiences, such as hearing voices. Voice personalization adds specific meaning to love and intimacy, but at the same time it can practically exclude others from the inner experiential world of a person, thus deepening interpersonal isolation (
The nature of the IPA method is idiographic. Our results, even if they mirror to some extent certain common difficulties of patients, cannot be generalized. Moreover, we are aware of the extreme diversity of psychotic experiences, even within the formal diagnosis of schizophrenia, thus making “psychosis spectrum” perhaps a better term. This diversity makes some researchers doubt if the schizophrenia group can, in fact, be seen as one diagnosis, or rather many (
Engaging in self-reflexivity also made us aware of some further limitations and interpretational boundaries. All of the authors are psychologists and have some psychotherapeutic backgrounds. Thus, our perspectives may be different from that of other mental health professionals. We also have experience with psychotherapeutic work with psychotic patients and with accompanying psychiatric support groups for persons with long-term mental illness. Thus, this study explicitly intends to show the difficulties and emotions of this group of patients in a way that would give justice to those experiences in all of their complexity and fight the stigma. For that reason, we may be less focused in our analysis on deficits sometimes brought on by illness, especially when it comes to negative symptoms, such as severely impoverished affect and passivity. Even if we did not purposefully influence the sampling of participants, patients with predominantly negative symptoms were less likely to be in our sample. Taking part in an IPA study requires personal motivation on the part of the patient, openness and willingness to engage in an in-depth conversation, and a willingness to give testimony to one’s own experiences.
The datasets generated for this study are not readily available because “This is a qualitative study based on the interviews, the interviews are not available as full data, as it would threaten the participant’s anonymity”. Requests to access the datasets should be directed to magda.budziszewska@gmail.com.
The studies involving human participants were reviewed and approved by Board for Research Ethics – Faculty of Psychology, University of Warsaw. Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements. However, the ethics committee approved the protocol of receiving oral informed consent.
MDB: planning the study, designing methods, designing interview protocol, initial analysis, collaborating in the analysis and refining it, and writing the major part of the manuscript. KW: designing interview protocol, conducting the interviews, collaborating in the analysis and refining it, and reviewing the written manuscript. MB-H: collaborating in the analysis and refining it, writing minor parts of the manuscript, reviewing the written manuscript, and editing. All authors contributed to the article and approved the submitted version.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.