The Hidden Weight of Stigma: What People With Multiple Sclerosis Endure Beyond the Disease Itself

Multiple sclerosis is usually described in the language of neurology: demyelinated lesions, relapses, progressive disability, and the slow erosion of the myelin sheath that insulates nerve fibers in the brain and spinal cord. Yet a new qualitative study from Iran argues that some of the deepest wounds inflicted by the disease are not neurological at all. Research published in BMC Psychology by Yaghoob Harooni Jamalooei, Maryam Esmaeili, Ahmad Abedi, and Mohammad Reza Najafi of the University of Isfahan and Isfahan University of Medical Sciences documents how people living with multiple sclerosis experience social stigma, and how that stigma reshapes identity, relationships, and emotional well-being in ways that clinical measures of disability often fail to capture.

The research team set out to answer a deceptively simple question: what is it actually like to live with the stigma attached to multiple sclerosis? Quantitative surveys can measure how strongly people endorse statements about being devalued or discriminated against, but they cannot reveal the texture of those experiences, the moments in which stigma first appears, or the private strategies people devise to manage it. For that, the researchers turned to phenomenology, a philosophical and methodological tradition dedicated to describing human experience as it is lived rather than as it is measured. Phenomenological studies ask not how common an experience is, but what its essential structure is for the people who undergo it.

Specifically, the team employed Colaizzi’s descriptive phenomenological method, a seven-step analytical procedure widely used in nursing and health psychology research. In this approach, researchers read interview transcripts repeatedly to extract significant statements about the phenomenon under investigation, formulate meanings from those statements, and then cluster the formulated meanings into broader themes. The themes are subsequently organized into an exhaustive description of the experience, condensed into its fundamental structure, and finally validated by returning to participants to confirm that the account rings true to their lived reality. Throughout the process, the researchers bracketed their own assumptions, a practice rooted in phenomenology’s insistence that the investigator’s preconceptions must be set aside so that participants’ experiences can speak for themselves.

To ensure the study’s rigor, the authors applied the criteria established by Lincoln and Guba, the foundational framework for trustworthiness in qualitative research. These criteria, encompassing credibility, transferability, dependability, and confirmability, serve as the qualitative analogue of validity and reliability in quantitative science. Participants were recruited through purposive sampling with maximum variation, a strategy deliberately designed to include individuals diverse in demographic and disease characteristics so that the resulting themes would reflect a broad spectrum of experience rather than a narrow slice of it. All participants provided written informed consent, and the study received ethical approval from the University of Isfahan under code IR.UI.REC.1399.082, with procedures conducted in accordance with the Helsinki Declaration.

The study’s participants were twenty individuals diagnosed with multiple sclerosis, recruited from neurology clinics affiliated with the University of Isfahan in Iran. Each took part in semi-structured, in-depth individual interviews that were audio-recorded and transcribed verbatim. Semi-structured interviewing is a hallmark of qualitative health research because it combines a consistent thematic guide, ensuring that all participants address the core questions, with the flexibility to follow unexpected but meaningful threads as they emerge. In a phenomenon as intimate and socially sensitive as stigma, this flexibility matters: participants can describe the specific encounters, glances, and silences through which they first sensed that others saw them differently.

When the transcripts were analyzed according to Colaizzi’s method, three main themes emerged. The first was social isolation. Participants described experiences of discrimination and rejection, and a corrosive loss of self-worth that followed. Many reported that after their diagnosis, they came to be perceived as incapable or dependent, regardless of their actual functional abilities. This perception, in turn, led to reduced participation in social life and relationships that changed, often painfully, in character. The experience echoes a well-documented pattern in disability research in which the assumptions of others, sometimes more than the symptoms of the disease itself, determine how much a person can engage with the world.

The second theme captured the psychological and social consequences of stigma following the MS diagnosis. Participants spoke of uncertainty about the future, feelings of depression, and a persistent fear of judgment, rejection, and deepening disability. Multiple sclerosis is inherently unpredictable; relapses can occur without warning and the disease course varies enormously between individuals. The study suggests that stigma compounds this uncertainty by layering social threat on top of medical uncertainty. A person facing an unpredictable disease must simultaneously manage the fear of how family members, employers, and friends will react to each new symptom, each visible difficulty, each disclosure.

The third theme concerned the coping strategies participants developed to manage stigma. These fell into three recognizable patterns: concealing the illness, responding in self-destructive ways, and drawing on spirituality as a source of emotional support. Concealment, hiding a diagnosis from others to avoid being labeled, is a common response to stigmatized conditions, but it carries costs, including the loss of potential support and the psychological burden of maintaining secrecy. The identification of self-destructive responses among some participants underscores the severity of the emotional toll that stigma can exact. Spirituality, by contrast, emerged as a protective resource, providing participants with a framework of meaning and emotional comfort in a cultural context where religious faith is deeply woven into daily life.

The authors conclude that social stigma represents a substantial psychosocial burden for people with multiple sclerosis, one that influences identity, emotional health, relationships, and adaptation to the illness. Their recommendation is that MS care should not stop at immunomodulatory drugs and symptom management. Instead, they argue, clinical care should incorporate systematic stigma assessment, psychological interventions, family education, and social support programs designed to reduce the consequences of stigma and improve quality of life. This aligns with a broader shift in chronic disease management toward biopsychosocial models, which treat social context as a genuine determinant of health outcomes rather than a background variable.

What makes this study notable is its grounding in the Iranian cultural context, where qualitative evidence on stigma in multiple sclerosis had been limited. Stigma is never culture-free; the meanings attached to chronic illness, the expectations placed on patients, and the available sources of solace all vary across societies. By documenting how stigma is experienced and interpreted in a specific cultural setting, the research provides a foundation for interventions that are attuned to local realities rather than imported wholesale from other contexts. For the millions of people worldwide living with multiple sclerosis, the message is clear: the disease attacks the nervous system, but its social echoes can reach nearly every corner of a life, and recognizing that hidden burden is the first step toward easing it.

Subject of Research: Lived experiences of social stigma among individuals with multiple sclerosis

Article Title: The lived experiences of social stigma among individuals with multiple sclerosis: a qualitative phenomenological study using Colaizzi’s method

Article References: Harooni Jamalooei, Y., Esmaeili, M., Abedi, A., & Najafi, M. R. (2026). The lived experiences of social stigma among individuals with multiple sclerosis: a qualitative phenomenological study using Colaizzi’s method. BMC Psychology. https://doi.org/10.1186/s40359-026-05741-6

Image Credits: AI Generated

DOI: 10.1186/s40359-026-05741-6

Keywords: multiple sclerosis, social stigma, internalized stigma, phenomenology, Colaizzi method, qualitative research, lived experience, psychosocial burden, social isolation, coping strategies, Iran, BMC Psychology