Being Otherness: A Phenomenological Journey of Stroke Survivors’ Stigma

Abstract

Background:

Stroke rehabilitation profoundly impacts individuals’ physical, emotional, and social identities, presenting significant challenges to self-perception, mental health, and quality of life. Social stigma, particularly internalized stigma, exacerbates these difficulties, influencing recovery and rehabilitation. Despite its critical implications, the experiences of internal stigma among stroke survivors remain underexplored, particularly within specific cultural contexts.

Aim:

This study aims to explore the lived experiences of stigma among stroke survivors in Indonesia, focusing on its impact on their self-identity, social interactions, and recovery process.

Methods:

A qualitative study employing hermeneutic phenomenology was conducted to explore the experiences of 12 stroke survivors. Participants were purposively sampled from a neurological rehabilitation center in Bali, Indonesia. Data were collected through semi-structured interviews conducted in Bahasa Indonesia, focusing on self-perception, social interactions, and recovery challenges. Thematic analysis was used to identify and interpret core themes, supported by rigorous methods to ensure credibility, dependability, and transferability.

Results:

Four main themes emerged: (1) Journey of Self-Acceptance and Inner Struggles: Participants described challenges in accepting their altered identities, grappling with self-image, guilt, and the quest for purpose. Rediscovering usefulness emerged as a key coping mechanism. (2) Challenges in Social Connections and Communication: Survivors experienced shrinking social circles, communication difficulties, and feelings of devaluation, often leading to social isolation and emotional distress. (3) Navigating External Perceptions and Social Stigma: Participants reported discrimination, unfair treatment, and a lack of respect, contributing to feelings of alienation and diminished dignity. (4) Resilience and Support Systems in Recovery: Resilience, supported by strong relationships and rehabilitation efforts, played a crucial role in fostering recovery and finding new meaning in life.

Conclusion:

Internal stigma profoundly impacts stroke survivors’ recovery journeys, shaping their emotional resilience, social interactions, and self-perception. Addressing stigma through targeted interventions, inclusive care models, and societal education can enhance survivors’ quality of life and recovery outcomes. Future research should explore broader populations to generalize findings and develop tailored interventions to reduce stigma’s negative impact.

Background

A person’s social, emotional, and physical identities undergo profound transformations as they undergo stroke rehabilitation.^1,2 Stroke survivors face numerous obstacles that can greatly impact their sense of self, mental health, and relationships with others.^{1 -4} Moreover, they have a significant negative impact on people’s quality of life. It is critical to gain a better understanding of stroke survivors’ experiences. ⁵

Globally, stroke ranks high among the primary causes of permanent disability.^6,7 Physical disabilities, such as those affecting movement, speech, and everyday functioning, are common among survivors.^5,8 Yet, beyond physical limitations, stroke frequently disrupts a survivor’s sense of self and place in the world, as they must often adapt to a “new normal.”^2,9 This process can include reconfiguring their self-concept and accepting an altered body and lifestyle, often while coping with a diminished sense of autonomy and independence. ⁵ As they adapt to a life they might not even recognize, many people find that these changes exacerbate their problems with self-esteem, self-perception, and social identification.^2,5

The already difficult process of healing becomes much more so when dealing with social stigma and actual or imagined prejudice. ¹⁰ Those who have survived a stroke often speak of having their condition used against them, including incidents of disrespect, unfair treatment, and the devaluation of their opinions. ¹¹ As a result of these encounters, they may begin to feel less valuable and less accepted by their social circles, which can lead to feelings of alienation or “otherness.” ¹²

Discriminatory treatment can lead to an internalized sense of inferiority, as survivors may begin to see themselves as burdens or as individuals deserving of pity rather than respect. Consequently, they may withdraw from social engagements, exacerbating the already challenging effects of social isolation often associated with stroke recovery. ¹³

Stigma refers to a characteristic that undermines individuals, provoking bias, exclusion, and a decline in social standing.^14,15 Stigma can be divided into 2 distinct categories: “enacted” stigma, which pertains to the tangible experience of discrimination stemming from individuals’ perceived social unacceptability, and “felt” stigma, which encompasses the internalized shame associated with being perceived as deviant, along with the anticipation of potential discrimination or exclusion. ¹⁶

The internal stigmatization experienced by stroke survivors may significantly influence their motivation to engage in rehabilitation and therapy, potentially leading to doubts regarding their capacity for complete recovery. ¹⁷ Internalized stigma often leads individuals to reject assistance and support from others, as they perceive themselves to be a burden on their family or society. ¹⁸ Emotions such as hopelessness, frustration, or depression that may emerge from internal stigma can exacerbate one’s emotional state and hinder the overall recovery journey. ¹⁹ Consequently, it is imperative to focus on this matter, as enduring internal stigma can lead to stroke recurrence, diminish motivation and the impetus for recovery, and disrupt the rehabilitation process, potentially exacerbating the condition and escalating healthcare expenses.^14,20

The phenomenon of internal stigma, characterized by a negative self-perception stemming from a particular condition, is profoundly shaped by the cultural context of the surrounding community and can significantly impact one’s quality of life. Individuals who experience humiliation from their community due to specific traits or conditions frequently cultivate internal stigmatization. This phenomenon can diminish their self-esteem and overall quality of life, thereby hindering their pursuit of necessary care and support, ultimately disrupting their general well-being. ²¹

The process of finding meaning and purpose post-stroke also emerges as a central theme for survivors. Faced with altered realities, many individuals embark on a journey to rediscover purpose in the aspects of life still available to them. This search often provides a buffer against the despair and self-blame that may arise from lost abilities. Finding purpose in one’s life after a stroke can be a significant coping tool. Stroke survivors who are able to identify meaning in their experiences tend to be more psychologically resilient. Therefore, the study aimed to explore post-stroke experience of stigma, focusing on its impact on their self-identity, social interactions, and recovery process.

Methods

A qualitative research design rooted in hermeneutic phenomenology was employed to thoroughly comprehend the intricate and diverse experiences of stroke survivors.^22,23 This methodology aimed to reveal the deep personal significances and lived realities linked to life after a stroke, facilitating an in-depth examination of both the physical and emotional aspects. ²⁴ The approach concentrated on elucidating the intricate process of self-acceptance, the complexities of social interaction, and the fortitude necessary to traverse the evolving demands of life. ²⁵

Study Design

The study engaged stroke survivors who had been in outpatient care for at least 6 months, ensuring participants had time to reflect on and adapt to their altered lives. Participants were recruited from various outpatient rehabilitation clinics and stroke support networks to capture a wide range of experiences and perspectives. A review study found that traditional qualitative research practices ranged from 5 to 30 participants. ²⁶ To support the thematic analysis, 12 to 20 participants to reach thematic saturation.^26,27

Participants

The respondents were selected from Yayasan Amarane, a non-profit organization that focus on stroke and neurological rehabilitation, in Bali, Indonesia. Participants were selected through purposive sampling based on specific criteria: they were stroke patients with compos mentis consciousness, aged 18 years or older, receiving outpatient treatment at a hospital, and living with family members. Patients were excluded if they had aphasia, severe depression, cognitive impairments, or were on antidepressant or psychiatric medications. During recruitment, 5 patients declined to participate, citing reasons such as discomfort with the topic, concerns about their condition, or feelings of insecurity. Ultimately, 12 stroke patients were included in the study, with the majority male; the youngest was 41 years old, and the oldest was 75 years old (see Table 1). The sample size was determined when data saturation was achieved, meaning no additional codes emerged from the interviews. Data analysis was conducted following each interview.

Table 1.

Demographics of Respondents.

No	Sex	Age (years)	Symptoms	Habit pre-stroke (alcohol and smoking)	Years of stroke and comorbid
1	Male	72	Right arm	—	First stroke 9 years ago, second stroke 4 months
2	Male	75	Left arm	—	First stroke 5 years
3	Female	75	Left arm and leg	—	First stroke 3 years
4	Male	61	Left arm	—	First stroke 16 years
5	Male	53	Right arm	—	First stroke 3 years, sixth stroke (hemorrhagic) 2 months, hypertension
6	Female	48	Left leg	—	First stroke 3 years
7	Female	69	Left arm	—	First stroke 9 years, hypertension, diabetes
8	Male	41	Left arm	Smoking	First stroke 3 months
9	Male	54	Left leg	Smoking, alcohol consumption	First stroke 7 months, hypertension
10	Male	65	Right arm	Alcohol consumption	First stroke 3 years
11	Female	56	Left arm and leg	—	First stroke 5 years, hypertension
12	Female	65	Right arm	—	First stroke 6 years

Data Collection

Interviews were conducted using a semi-structured format. Interviews, data analysis, and interpretation were all conducted in Bahasa Indonesia for this study. Interviews ranged in length from about 60 to 90 min and was done following patient’s time and place. Respondents to the sample questions discussed their self-perception after the stroke, difficulties with social interactions, and the role of social support in their road to recovery. “How have you felt changes in your self-image since the stroke?” and “Can you describe an instance when you felt differently treated by others?” were some of the questions that appeared. Questions such as “Reflect on your feelings when completing a rehabilitation exercise” and ‘Describe an experience when you felt you were treated differently” were provided to participants to help them organize their thoughts and feelings during reflecting.

The team consisted of the principal investigator with managerial responsibilities, 2 supervisors, 1 neurologic nursing expert, and 1 member expert in the qualitative research. The principal investigator (PI) interviewed the participants. The second and third authors were the project supervisors. The PI, fourth, and fifth authors analyzed the data. Members of the research team were able to monitor the development and outcome of the study through virtual meetings. Everyone on the team has worked in nursing research at some point. The interview was done once for each participant, and it is worth noting that no researcher-participant relationship existed, which could have affected the results.

Data Analysis

Thematic analysis guided the data interpretation. ²⁸ The first stage involved detailed coding of interviews, journals, and observational notes to identify emerging themes, followed by organizing these codes into subthemes to capture nuances within each theme. Subthemes, such as the “fear of being a burden” within the resilience category, provided depth to each theme. These were then synthesized into the core themes: Journey of Self-Acceptance, Challenges in Social Connections, Navigating External Perceptions, and Resilience and Support Systems. A hermeneutic approach helped interpret not only participants’ words but also the underlying emotions and existential questions present in their reflections, resulting in a rich and layered understanding of their experiences.

To get a full picture of the data, The PI, fourth, and fifth authors read the interview transcripts many times. Coding was applied to all necessary components. The PI, fourth, and fifth authors coded in Bahasa Indonesia, and grouped comparable data into themes and subthemes. The PI and fifth authors were responsible for translating the results into English. The second and third authors checked the results for accuracy. After much deliberation, the group settled on a set of overarching themes and subthemes.

Ethical Considerations

Ethical approval for the study and data collecting was granted by the Hospital Institutional Research Ethics Committee (000.9.2/2533/RSUD/2024). Participants were given written and spoken information on the goals and techniques of the study prior to involvement. Participants could withdraw at any point before data collecting was finished after consent forms were signed and a time and place for the interview was decided upon. To guarantee anonymity and preserve participants’ privacy, every interview received a code rather than a name or institution identification. Their identities and information were hence kept private.

Rigor and Trustworthiness

To guarantee the methodological soundness of the research, the scientists applied particular guidelines to acquire rigor and reliable criteria. First, rigor came from applying a well-known approach for phenomenological research. ²⁹ Guba and Lincoln’s 1989 evaluation techniques—staying in touch with the participants for a long period and being honest about the focus of the study, in-depth data analysis, discussion of developing themes with participants, and theme modification depending on participant feedback—were also applied.^30,31 Excel files were used to record these procedures under confirmability and dependability; participant descriptions in the final report help to show the relevance of the results of the study. Moreover, participants got a process summary and diagram to guarantee the credibility of the research, and member checks were carried out. To increase accuracy, also consulted throughout the study were nursing leadership specialists and qualitative research experts. Ultimately, by outlining the background, context, and stage of the research in the introduction and selecting participants with the highest possible variance, transferability was offered.

Results

Theme 1: Journey of Self-Acceptance and Inner Struggles

This theme highlights the inner work and emotional journey of stroke survivors as they grapple with acceptance, self-image, guilt, and the search for purpose. It captures the transformative struggle and growth involved in rebuilding a sense of identity.

Acceptance of Change

I am learning to accept that my body has changed, even if it looks and feels different than before. (p4)

Acceptance is my constant challenge and my daily victory, as I come to terms with the effects of my stroke. (p8)

Struggles With Self-Image and Dignity

I feel I’ve lost part of myself, struggling to see the person I once was in the mirror. (p9)

Stroke may have changed how others see me, but I am learning to rebuild my own self-worth. (p1)

Feelings of Self-Blame

I catch myself wondering, ‘What could I have done differently?’ But I’m learning that guilt serves no purpose. (p12)

Blaming myself won’t change what happened. I need compassion, not self-criticism, to move forward. (p3)

Rediscovering Usefulness and Purpose

I am still useful. Stroke has taken a lot, but it has not taken away my ability to make a difference. (p11)

My worth is not in what I do alone, but in the impact I have, however small. (p5)

Theme 2: Challenges in Social Connections and Communication

This theme addresses the impact of stroke on social interactions and communication. It reflects the emotional toll of communication difficulties, the shrinking social circles, and the frustration of being overlooked or feeling envy over lost abilities.

Embarrassment From Communication Difficulties

Every word I struggle to say feels like a small loss, a reminder of what was once effortless. (p7)

My voice used to be a bridge; now, it sometimes feels like a barrier, and I feel the weight of others’ impatience. (p2)

Restricted Social and Communication Scope

My world has grown smaller, as conversations and connections slip through the gaps created by my stroke. (p6)

I used to feel part of a community, but now I struggle to find my place in conversations. (p10)

Devaluation of Opinions

People listen, but I feel like they don’t hear me. My opinions have become background noise to their assumptions. (p8)

My voice may have changed, but my thoughts are still my own. I am still here, with opinions that matter. (p10)

Feelings of Unhappiness and Envy

Constant reminder of what I have lost is provided by seeing others do what I am unable to do. (p6)

Seeing someone engage in something that used to be quite natural for me makes me sad. (p3)

Theme 3: Navigating External Perceptions and Social Stigma

Stroke survivors face social stigma, prejudice, and disrespect, which are explored in this theme. It explores how the way other people see you can make you feel even more exposed and excluded.

Discomfort With Others’ Treatment

It’s hard to feel dignified when people treat me as though I am fragile, different, or somehow less capable. (p11)

Their pity feels like a mirror of my vulnerability—a reminder of what I can no longer do. (p5)

Experiences of Unfair Treatment

Stroke did not just affect my body; it changed how others see me, sometimes in ways that hurt. (p4)

I am treated differently now, not because of who I am but because of what happened to me. (p9)

Experiences of Discrimination

I face barriers I never expected, not just physical but in how people see and treat me. (p9)

Discrimination feels like being pushed further away from normalcy—reminded daily that I am seen as ‘different.’ (p7)

Lack of Respect From Others

It’s painful to feel less respected, as if my value has been diminished along with my abilities. (p1)

Respect is what I crave most—not sympathy, but an understanding that I am still deserving of dignity. (p6)

Theme 4: Resilience and Support Systems in Recovery

The significance of having supportive relationships, overcoming obstacles, and the process of rehabilitation are the main points of this theme. It shows how grateful stroke survivors are for their loved ones’ patience and support and how strong they are in the face of adversity.

Commitment to Rehabilitation

Rehabilitation is my path to reclaiming control—every step, every exercise brings me closer to hope. (p1)

I push through the pain and frustration of recovery because I owe it to myself to try. (p4)

Finding Meaning in Life

Despite everything, I search for purpose. My life is still meaningful, even if I have to look harder to see it. (p2)

Stroke changed my life’s direction, but it did not take away my ability to find meaning in each day. (p3)

Fear of Being a Burden

I worry about the weight I add to others’ lives, wondering if they see me as a responsibility rather than a loved one. (p11)

My biggest fear is not my own limitations but that my needs may be too much for those I love. (p6)

Appreciation for Patience and Support

In the patience of others, I find strength. Their kindness gives me courage on days when I have little myself. (p5)

It is a blessing to have someone who will not rush me to join them; it is a sign that I am not going through this ordeal alone. (p7)

Discussion

The results show how emotionally taxing and complex the process is for stroke survivors as they try to put their lives back together after suffering a devastating loss. Stroke survivors’ journeys to recovery are shaped by a complex web of factors, including psychological, social, and emotional factors.

Self-Acceptance and Identity Rebuilding

Stroke survivors experience a profound identity shift, grappling with their transformed bodies, abilities, and self-image. The emotional work of accepting these changes is brought to light by this. Many people find that having a stroke changes their sense of identity and that it’s a constant battle to find common ground between their pre- and post-stroke selves. ³² Survivors describe learning to accept their bodies’ limitations, often viewing this acceptance as a daily victory. This personal transformation is further complicated by struggles with self-image and dignity, as individuals seek to recognize themselves in the mirror and redefine self-worth in light of altered physical capabilities.^33,34 The expressions of guilt and self-blame reflect the common psychological response to traumatic change, as survivors may initially internalize the event, questioning whether they could have done something differently.

Despite these challenges, the ability to rediscover purpose and usefulness emerges as a critical coping mechanism. ³⁵ Survivors convey that, even with physical limitations, they retain the capacity to impact others’ lives positively, affirming their sense of worth. This process of reclaiming usefulness aligns with theories of resilience that emphasize the importance of purpose and self-efficacy in rebuilding identity.^36,37

Challenges in Social Communication and Connections

The social consequences of stroke, particularly in communication and social engagement, are significant sources of frustration and emotional strain. Communication difficulties, such as speech impediments or struggles with articulation, alter the ease with which survivors connect with others, often leading to embarrassment or self-consciousness.^37,38 Survivors express that every lost word or misunderstood statement feels like a setback, transforming their once effortless voice into a barrier. This shift affects social relationships, causing survivors’ social circles to narrow as conversations become strained and social interactions diminish. ³⁸

The theme of restricted social and communication scope illustrates how survivors experience isolation and a sense of losing their place in their communities. Feelings of being overlooked or undervalued further compound this isolation, as survivors report that their opinions are often dismissed or taken less seriously. ³⁹ Survivors also express feelings of envy and sadness when witnessing others engaging in activities they can no longer enjoy. These findings align with existing literature on social isolation in chronic illness, emphasizing the need for inclusive communication practices and social support networks.^40,41 Survivors could be helped to maintain meaningful connections and cultivate a sense of belonging through interventions that promote social reintegration, like peer support groups or group therapy.

Navigating Societal Perceptions and Stigma

Survivors’ experiences of stigma and altered social treatment reflect the broader societal attitudes toward disability and recovery. Many describe feelings of discomfort when others treat them as fragile or overly dependent, which can mirror and magnify their vulnerabilities. Such treatment reinforces negative self-perceptions and can hinder survivors’ sense of dignity, as they feel others no longer view them as capable individuals. Experiences of unfair treatment and discrimination further amplify these sentiments, where survivors feel marginalized not only due to their physical limitations but also because of others’ biased perceptions.^37,41 This stigma reinforces a sense of “otherness,” highlighting how society’s narrow definitions of ability can exacerbate the psychological impact of stroke. ⁴²

Survivors’ longing to be acknowledged and appreciated for who they are as complete human beings worthy of respect instead of pity is heightened by the disrespect they experience. All of these things have shown me how important it is for society as a whole to learn empathy and tolerance. ⁴³ Advocacy efforts, educational programs, and healthcare provider training to combat bias and promote respect for the dignity and abilities of stroke survivors could all be part of the societal level response to these issues. ⁴⁴ This perspective is backed by the social model of disability, which states that obstacles can be both physical and social in nature, and that the first step toward inclusivity is to acknowledge the value of individuals regardless of their physical limitations. ⁴⁵

Resilience and Support Systems in Recovery

A key component in the recovery journeys of stroke survivors is resilience, which is enhanced by having supportive relationships. Survivors’ will to reclaim control and enhance their standard of living is evident in their dedication to rehabilitation, which is emotionally and physically taxing. Survivors of stroke often talk about how they are determined to find meaning in life after the disease has taken hold, and how this determination is not dependent on their physical abilities in the least. ⁴⁶ They are more concerned with the mundane, the moments of connection with others, and the little triumphs along the way. But this toughness isn’t something you work on on your own. ⁴⁷ Survivors’ recovery hinges on the support they receive from loved ones and medical professionals. Patient and compassionate care boosts survivors’ determination and combats feelings of loneliness. ³⁶

Many survivors have spoken about how much they appreciate their loved ones’ tolerance and understanding, which has helped them feel less alone and less like a burden. The importance of supportive relationships in building emotional resilience and giving survivors the will to face rehabilitation head-on is emphasized by the theme of gratitude for support. ³⁸ The importance of relational support in creating a supportive atmosphere for recovery is highlighted by these findings.

Strengths and Limitations of the Study

To our knowledge, this article is the first comprehensive investigation that focuses specifically on the stigma that patients experience after a stroke. Therefore, it can be considered the strength of the study.

This study has limitations. The dependence on qualitative data, although beneficial for depth, restricts the generalizability of findings to larger stroke survivor populations. The study may be subject to selection bias, as participants who opt to share their experiences may significantly differ (eg, in stroke severity or access to support systems) from those who do not participate.

Implications and Future Directions

Addressing the psychological, social, and emotional aspects in care models can enhance recovery outcomes and quality of life. These dimensions are crucial in shaping their journey. Interventions that facilitate identity reconstruction, provide communication aids, reduce social stigma, and cultivate resilience through supportive relationships are crucial in this regard.

Future research should investigate the long-term of identity transformation, stigma, and support systems on stroke recovery. Longitudinal studies could provide insights into how evolve over time. Exploring culturally sensitive approaches to support diverse survivor populations can further enhance inclusivity and ensure that care models reflect the needs of all survivors.

Conclusion

The study captures the complexities of stroke survivors’ experiences of stigma, illustrating the need for a compassionate, comprehensive approach to recovery that values their identities, social connections, and resilience. The relationship between these 4 themes provides a comprehensive framework for understanding stroke-related stigma. Self-acceptance and Inner Struggles highlight the internalized stigma and emotional turmoil survivors face in redefining their identity. Challenges in Social Connections reveal how social interactions are altered due to communication barriers and discriminatory treatment. Navigating Stigma delves into the external pressures and societal perceptions that shape survivors’ experiences, while Resilience Supported by Social Networks showcases how survivors find strength through relationships and rehabilitation. Together, these dimensions offer a holistic view of stigma’s psychological, social, and rehabilitative impacts, emphasizing the need for multi-faceted interventions. This thematic structure adds value by bridging personal identity struggles with external social experiences, demonstrating how stigma influences both individual well-being and broader social reintegration efforts.

These findings underscore that stroke recovery is not merely a physical process but an emotional and social one, rooted in self-acceptance, dignity, meaningful relationships, and the enduring strength to rebuild one’s life. Through inclusive and empathetic care practices, we can create a recovery environment that truly respects and uplifts stroke survivors, fostering both their well-being and their sense of purpose in life.