Introduction

Living with an anal fistula is often stressful and can be physically and emotionally challenging. Difficulties range from short-term challenges lasting weeks to those persisting for years or even being lifelong. Some fistulas heal spontaneously without surgery while others can be highly complex, requiring multiple surgical procedures over many years. Surgical approaches vary and the number of treatment strategies reflects the complexity of the condition [1]. New methods are arising, but there is no single treatment that can help all fistula patients.

Despite the diversity of symptoms in patients with anal fistula, research into patient experience is sparse, with few quantitative and qualitative studies published. Questionnaire studies on quality-of-life show a reduction in perceived quality-of-life [2–4]. This absence is particularly notable given how chronic and stigmatized conditions, even those less publicly visible, can exert a profound impact on how individuals construct and protect their sense of self in daily life. One survey examined various treatment modalities, noting that some of the more aggressive options carry the risk of fecal incontinence that significantly diminishes quality-of-life [3]. Another study revealed that patients with Crohns disease desire more information on the disease and the pros-and-cons of various surgical strategies so they can take part in intervention decision-making [5]. One survey covering a wide range of anorectal disorders measured the impact of benign anorectal conditions such as constipation and incontinence on quality-of-life. Quality-of-life was lower in affected individuals than in age-matched individuals without anorectal issues [6]. Another qualitative study showed that Crohns patients with a fistula where the future outcome was uncertain were severely affected physically and emotionally, and that this had a great impact on their quality-of-life. This included missed work opportunities, poorer personal relationships, and limited tolerance to mistreatment [2]. Lee et al stressed the patient’s need for information on the risks and benefits of fistula treatment [7]. Although anal fistula is a localized and often hidden condition, it shares important psychosocial features with other chronic illnesses. As seen in research on patients with cancer and similar long-term conditions, a loss of bodily control and persistent uncertainty can deeply affect how individuals perceive their agency and sense of self [8].

A study by Iqbal et al using semi-structured interviews showed the condition to have an impact far beyond just the physical symptoms [4]. Our current knowledge about the quality-of-life of patients with a fistula not related to Crohns disease remains limited, and there is a specific need for qualitative studies on other forms of fistula if we are to understand the patient’s situation, needs, and preferences and by so doing improve their care. Furthermore, studies that explore not just functional outcomes but how patients experience illness in relation to identity, stigma, and social participation are particularly lacking. Although anal fistula is a localized and frequently invisible condition, its psychosocial burden mirrors those seen in other stigmatized illnesses. Research on conditions such as cancer and depression has shown how individuals must renegotiate their sense of self in the face of disrupted bodily norms, social withdrawal, and persistent uncertainty [8,9]. Similarly, patients with endometriosis report symptom invalidation and frustration with care structures that fail to recognize the full scope of their experience [10]. These findings suggest a broader relevance of identity work, stigma, and social silence in shaping illness experience, and point to a gap in qualitative exploration of such processes in the context of anal fistula.

The aim of this study was to explore how patients with an anal fistula experience life, focusing on psychological aspects and the impact on daily living. In this study, we understand identity as a dynamic and socially influenced process, shaped by how individuals interpret their bodies, roles, and relationships over time [11,12]. Our analysis contributes a conceptual framework grounded in theories of illness identity and the disruption of everyday life within the context of a chronic condition. [11,13,14] This theoretical lens guides the study’s interpretation and aims to inform both future research and clinical practice.

Materials and Methods

Results

Participant Characteristics

The final sample included 15 participants (8 women and 7 men) between 20 and 76 years of age, all of whom were undergoing active treatment for a cryptoglandular anal fistula at the time of the interview. Participants represented a range of fistula complexities and treatment stages. Symptom duration ranged from a few months to more than ten years. See Table 1 below.

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Table 1. Participant characteristics.

https://doi.org/10.1371/journal.pone.0345581.t001

All participants were living in Sweden and represented diverse ethnic and educational backgrounds. The diversity of symptom duration, age, and treatment experiences allowed for a broad exploration of psychosocial and identity-related aspects of living with an anal fistula.

Categories and subcategories

Interview analysis revealed the main category “Identity” in patients with an anal fistula. We further identified three categories “Identity-shaping mechanisms”: Knowledge uncertainty; Expectations and Experience; and Quality-of-life. These three categories were further divided into twelve subcategories providing deeper insights into each one of the identified mechanisms. “Identity-shaping mechanisms” refer to the social, emotional and informational forces that influence and mold how individuals understand and position themselves in the context of illness, e.g., their beliefs, and sense of self over time. See Table 2 for and overview of the categories.

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Table 2. Overview of the analysis process.

https://doi.org/10.1371/journal.pone.0345581.t002

Table 2 is illustrating a brief overview showing the main category “Identity”, the three “Identity-shaping mechanisms” categories, and the subcategories.

Identity

Participants described how anal fistula impacted their sense of identity, both in subtle daily moments and in broader questions of self-definition. Their narratives reflected tensions between who they were before the illness and who they were becoming as they adapted to chronic symptoms. It was hard to deal with uncertainty: how long will I have symptoms – will it be months, years, or will I never be free of my fistula? Fear of incontinence or having a stoma was described, as well as the conflict of living as usual on one hand while feeling that nothing is truly normal on the other. Sitting on a chair or in the car is painful making it difficult to concentrate, affecting both work and social life. One participant described:

“It’s quite difficult. It’s hard to sit because I’ve just had surgery, I’m sore and it’s extra sensitive. It’s been going on for so long now that I’ve got used to it. You cannot be yourself.” (Interview 4, female 76 years)

Many experienced a disruption in how they saw themselves at work, in relationships, and in their bodies. A recurring theme was the difficulty of maintaining a coherent sense of self when the illness was painful, private, and unpredictable. The main category “Identity” is further described and illustrated by the three “Identity-shaping mechanisms” and their subcategories:

1. Knowledge uncertainty.

The first category “Knowledge Uncertainty” comprised three subcategories: a) Uncertainty about time waiting for surgical care; b) Uncertainty about the condition; and c) Dealing with knowledge uncertainty through social contacts. “Knowledge uncertainty” refers to the state of being unsure or unclear about the nature of the illness, its treatment trajectory, and its possible outcomes. It encompasses doubts about beliefs, facts, and information. This lack of clarity shaped how participants approached their care and how confident they felt navigating the healthcare system.

“What I must mention is the need for more information, and if information cannot be given then at least describe possible scenarios.” (Interview 1, male 50 years)

Participants emphasized the importance of reliable, ongoing information. Many described frustrations with not knowing what to expect next, or how long the condition would last. They commented about the lack of awareness of living with a fistula in society leading to difficulty talking openly about their experiences or find meaningful support. The participants highlighted the importance of access to a contact nurse, someone consistent they could turn to for information and reassurance during a prolonged course of care. For many, uncertainty was not just medical, but also emotional and relational.

2. Expectations and experiences.

The second category “Expectations and experiences” comprised four subcategories, all describing worries: a) Uncertainty about the illness and its care from the beginning, leading to worries about not receiving correct treatment; b) Worry about it becoming a protracted process; c) Worry about things not getting better; and d) Worry about their condition being revealed instead of remaining private. Worry, in turn, leads to uncertainty regarding expectations, i.e., insight into possible outcomes, realistic view of how things may unfold, and what to expect from the healthcare system. Worry also affects experiences that encompass perceived encounters and events in the individual’s life. In this context it was the worry about not knowing what to do due to having diffuse symptoms in the beginning that were not recognized. This was exemplified by how long it took to come to the right clinic to receive correct surgical care. See Table 2 for an overview of this category with additional quotes. The participants often described a slow and fragmented care pathway, which contributed to feelings of helplessness and frustration. Many worried that they were not receiving the right treatment, or that the process would never lead to recovery.

One participant expressed

“This has been going on for so long you think the situation has come to a standstill, but on second thought it hasn’t. It’s just slow and annoying. “(Interview 9, male 40 years)

Participants engaged in what Charmaz (1995) describes as anticipatory identity work—the imaginative projection of feared future selves, such as incontinence or needing a stoma—shaping how they made sense of current suffering and future loss of control [11]. These imagined outcomes functioned as threats to personal dignity and social belonging, reinforcing their anxiety and shaping how they approached treatment. The stoma, although uncommon in fistula treatment, emerged in narratives as a powerful metaphor for loss of control and disruption of bodily boundaries. Even when medically unlikely, it was described as “worse than the fistula,” suggesting that fear was not based solely on clinical risk but on what the condition symbolized for participants’ self-image [17].

“I am worried that it will never go away, that I will have this fistula and string for the rest of my life. I try to live as good a life as possible, but there are certain things I love in life I have lost such as swimming and working out.” (Interview 13, female 67 years old)

Participants also spoke about the emotional burden of potentially disclosing their condition to others. The final identified subcategory was fear of their condition being revealed and losing privacy. Most participants felt they could communicate effectively with their closest family members and with their employer, but they were reluctant to disclose their condition to others. Some participants had told their friends, but many had chosen not to because their friends knew nothing of the condition, and they considered it to be too private. Depending on the kind of work, making necessary adaptations to their job was crucial to being able to manage their fistula effectively and continue to work.

“All my friends know, but not all my colleagues - only the ones I’m close to. My boss arranged a bidet in one of the toilets that I have access to, otherwise it would not have been possible to work at all.” (Interview 3, male 29 years old)

3. Quality-of-life.

The third category, Quality-of-life, comprised five subcategories: a) Hygiene and secretion; b) Intimacy; c) Social interaction and relationships; d) Pain; and e) The wish for a normal life.

The main limitation imposed by having an anal fistula was the issue of hygiene, which was perceived to impact every aspect of life, often causing them to stay at home. It impacted on the participants’ sense of control and social confidence. Many described a constant fear of leakage, the need to change clothes, and the and the anxiety of people noticing. These concerns often led to reduced participation in public or social settings. For many, the ongoing need to think ahead, stay clean, and avoid awkward moments became exhausting over time.

Although not taken up spontaneously, intimacy emerged as a sensitive and embodied concern when participants reflected on their relationships during the interviews. Participants described it as a major barrier to forming new relationships and confirmed the impact it had on existing ones. Participants saw it as a major obstacle when seeking an intimate relationship, the fistula imposed a sense of bodily defectiveness that complicated sexual closeness and desire. These self-protective narratives reflect what Charmaz (1995) refers to as discursive self-management, in which individuals manage stigma and vulnerability by reshaping how they present their illness within relationships [11]. This process illustrates how illness identity is negotiated in relational contexts, shaped by concerns of stigma and rejection [13,18,19]. One young woman explained:

“There is less desire for intimacy because you have pain and feel dirty down there. My partner understands but even so, it is difficult.” (Interview 15, woman 20 years)

This distancing was not only physical, but also narrative, a means of reclaiming control over a body that had become uncertain, painful, and socially risky.

The category “Quality-of-life” further comprised subcategories of pain. Pain was described as constant or recurring yet often normalized. Several participants said they had learned to live with it, even as it affected their concentration, energy, and emotional resilience.

“I feel it on and off every day. The combination of pain and the feeling. I have learned to live with the pain, I feel it has become like a part of me.” (Interview 13, female 67 years)

The anal fistula had an impact on the participants’ social life, their behavior, and relationships with other people. They experienced shame, had less interaction in relationships, and hesitated to be the one to take the initiative. Many weren’t sure how much to share with others and had to decide when to stay private and when to ask for support.

The final subcategory outlined was “Wish for a normal life”, reflected participants’ efforts to reclaim continuity and coherence in their lives interrupted by the unpredictability and stigma of the fistula. Rather than seeking transformation or adjustment, participants longed to return to what was previously taken for granted: spontaneity, bodily trust, and participation in ordinary family life [14]. This longing can in line with Williams (2000) be understood as a form of “normalization work”, and a response to the way chronic illness can disrupt a person’s daily routines, future plans, and sense of stability [14].

“I can never plan things for my family, I want to travel and swim with my daughter, but that isn’t possible. My husband wants to go to Thailand and be abroad more, but I feel everything must wait a bit until this problem is solved and that is taking a long time.” (Interview 8, female 37 years)

These hopes for returning to normality were not only goals but served as coping strategies, ways for participants to maintain a sense of identity and personal continuity despite the challenges of their condition [17,20].

These findings, taken together, show how participants’ experiences of living with anal fistula were shaped by uncertainty, bodily discomfort, and emotional strain. Across all three categories, Knowledge Uncertainty, Expectations and Experiences, and Quality-of-Life, they described how the condition affected how they saw themselves and how they related to others. Physical symptoms such as pain, leakage, and fear of incontinence often lead to feelings of shame, guilt, and a strong desire to hide their condition. The private and often invisible nature of the fistula contributed to stigma, while unclear information and slow treatment processes added to participants’ emotional fatigue. This resonates with findings in other under-recognized conditions such as endometriosis, where patients experienced symptom invalidation that exacerbated emotional distress and undermined their confidence in care [10].

Participants worked to preserve a sense of normality and self-worth, even as the fistula challenged their routines, relationships, and self-image. Their stories show how living with anal fistula involved ongoing efforts to maintain identity, privacy, and dignity in the face of an unpredictable and socially sensitive illness.

Based on participants’ narratives, we developed a conceptual framework that identifies three identity-shaping mechanisms: Knowledge Uncertainty, Expectations and Experiences, and Quality-of-Life, as outlined in Fig 1. These categories were grounded in the data and reflect how participants negotiated their sense of self and social presence in the face of chronic symptoms, invisibility, and stigma. Each mechanism describes a set of experiences and emotional responses that challenged or reinforced how individuals viewed themselves, physically, socially, and emotionally.

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Fig 1. Identity-shaping mechanisms and response: key mechanisms that shaped identity for participants: knowledge uncertainty about their condition; expectations and experience; and lower quality-of-life.

These factors collectively contribute to deterioration in self-image and how individuals with a fistula cope with time by interaction between physical health and identity.

https://doi.org/10.1371/journal.pone.0345581.g001

Discussion

This study explored how individuals living with an anal fistula experienced its impact on their psychological well-being, daily life, and sense of identity. Conflicting information or lack of adequate knowledge may lead to an identity crisis. Expectations and experiences play a crucial role in shaping how individuals regard themselves. See Fig 1 above. Positive experiences that align with expectations may reinforce an identity, while negative experiences may challenge or reshape it [21]. This reflects what Charmaz describes as the reconstruction of self in chronic illness, where identity is continually revised in response to bodily changes, uncertainty, and altered social roles. Understanding these connections can help address and manage the patients’ worries, that is psychological burdens associated with living with an anal fistula more effectively [11]. Personal examples, advice, and help in dealing with the stigma may reduce the patient’s fears and worries, improving their quality of life. This aligns with evidence that stigma can reduce patient engagement and prolong suffering [22]. Ensuring continuity of care and clear, compassionate communication could reduce the psychosocial burden of this condition. As such, our findings point to the need for a more stigma-aware and patient-centered approach to care.

Every participant longed for a normal life, being free of their fistula, and this had an impact on their behavior. We observed that participants approached their situation in various ways: some were positive and actively coped with their lives, while others adopted a passive stance, waiting to see what happens. Some took on a negative outlook, feeling disillusioned and sometimes engaging in negative behavior. These responses can be seen as different coping positions along a continuum of resilience, and was often closely linked to participants’ ability to maintain a coherent identity over time [23]. This aligns with research on cancer patients, where loss of bodily control and fragmented communication with healthcare professionals were found to shape disruptions in identity and agency. Over time, patients worked to regain a sense of coherence through dialogic and emotionally supportive clinical interactions [8].

Identity-shaping had a deep impact on the lives of the participants. A similar phenomenon was described for patients with Irritable Bowel Disease, where the diagnosis have a profound effect on family life, social life, and work; as well as the feeling of being controlled by the disease [24]. The participants in this study were forced to adapt their lives because of the fistula, finding ways to deal with the new situation. The disease directed their lives creating a new dimension of personal sacrifice but also a new insight into health and life. This aligns with Bury’s (1982) concept of chronic illness as a disruption to the expected flow of life, what he called a break in biographical continuity, requiring individuals to reinterpret their personal narratives. This experience has also been described in studies on how diabetes type 1, asthma, kidney failure and chronic heart failure effects self-image [11, 13, 25].

The term identity has been further explored by understanding “health identity” and “illness identity” which examine how people make sense of who they are in relation to illness. This aligns with Pelters’ (2024) framing of health and illness identity as dynamic constructs shaped by personal meaning, social interaction, and bodily experience. Health and illness are regarded as constructs and can be understood from questions like “Who are you with regard to health and illness?” or “How do you deal with health/illness?” [12]. How patients regard themselves changes with time as the condition is often ongoing, sometimes lasting several years. These constructs help frame the fluid and evolving nature of identity as participants adapt to a condition that may last for years and carries emotional and social meaning.

The three identity-shaping mechanisms presented here capture how patients navigated disruptions in knowledge, expectations, and everyday life, often without consciously framing it as identity work. Changes slowly develop as the individual adapts to the new way of life with their fistula, this is not always obvious to patients themselves. Yet their narratives reflect a deep engagement with questions of control, normalcy, and how to remain “themselves” despite prolonged uncertainty.

Matini et al studied how patients adapt life to inflammatory bowel disease, this patient group can also suffer fistula issues. Patients sought new definitions of what is normal in their lives just like the participants in this study [12,26]. This can be understood as a form of “normalization work” [20], where individuals strive to maintain or restore everyday routines and social relationships while managing a condition that threatens those very things.

A surprising finding was the fear of having a stoma even though this is an uncommon outcome of fistula disease. Many participants gave this answer to the question “What are you the most afraid of?” This fear appeared to reflect not only clinical concern, but a symbolic loss of bodily control and social acceptability, what Frank has described as the narrative weight where individuals imagine and emotionally respond to possible futures shaped by illness. None of the participants had accepted the condition as chronic, even those who had had it for years [27].

This study demonstrates that identity is not just disrupted by illness, but actively rebuilt through everyday struggles to stay visible, dignified, and connected. Narrative processes of making sense of illness over time, especially under unpredictable and socially charged conditions, can be seen as relational work. Research on cancer patients similarly illustrates how collective meaning-making with peers, family, and healthcare professionals can shape the experience of agency and illness identity [28]. Taken together, our findings align with recent qualitative work on other stigmatized or chronic conditions, reinforcing the importance of socially attuned care, identity-sensitive communication, and relational continuity in sustaining well-being across diverse health contexts [10,29].

Conclusion

The impact of anal fistula is individual and the patient’s response to the condition is shaped by physical symptoms, emotional stress, and social concerns. This study shows that these experiences are deeply connected to identity, and we propose a conceptual framework consisting of three identity-shaping mechanisms: Knowledge Uncertainty, Expectations and Experiences, and Quality-of-Life. These mechanisms help illuminate how patients attempt to preserve self-understanding and dignity in the face of an unpredictable and often stigmatized condition. Support from family, friends, and health professionals was described as essential for coping. We identified the need for enhanced emotional support, especially given the long duration and complexity of treatment, which require continuity of care. A designated contact nurse, someone who provides consistent communication, reassurance, and follow-up throughout the treatment journey, was seen as especially important. Participants felt that such a role could reduce uncertainty, foster trust, and make the condition feel more manageable. Similar challenges have been documented in other long-term conditions, where person-centered philosophies often fall short in actual service delivery. Patients value continuity and relational care but frequently encounter fragmented systems that make this difficult to achieve [29]. Clinicians must improve the timing, clarity and delivery of information given to the patient, especially in the immediate postoperative period when patients often feel vulnerable and uncertain. In addition, opportunities for peer support, whether through patient groups or online platforms, may provide shared understanding and reduce isolation. Iqbal et al. (2022) have similarly emphasized the value of accessible and ongoing support for this group.

This study underlines the need for a more holistic approach to fistula management that goes beyond physical treatment. Addressing the emotional and social aspects, such as reducing stigma and providing psychological support, is crucial to improving overall wellbeing. Education and counselling aimed at improving knowledge and alleviating uncertainty and fear are essential components in helping patients regain control over their lives. Moreover, tailored interventions that focus on enhancing quality-of-life and identity reconstruction, while taking into account the psychosocial burdens involved, can help patients regain control over their lives and feel better supported throughout treatment. Living with an anal fistula is not only a medical condition but also a deeply personal and social experience that challenges patients’ sense of identity, dignity, and connection. Our findings call for clinical care that recognizes this complexity, not only through better treatment options, but also by fostering relational continuity, emotional validation, and clear communication. By centering the patient’s lived experience, healthcare professionals can help restore a sense of control and self-worth in a context too often marked by invisibility and silence. In doing so, care for anal fistula can move beyond the biomedical to embrace the full person behind the diagnosis.