Research code: PSYE-202505-1124
Ethics code: PSYE-202505-1124
Clinical trials code: IRCT20220808055640N1
1- 1. PhD Student, Department of Psychology, Psychology and Educational Science Faculty, University of Tehran, Tehran, Iran.
2- 2. Associate Professor, Department of Psychology, Psychology and Educational Science Faculty, University of Tehran, Tehran, Iran. ,mfiroozy@ut.ac.ir
3- 3. Associate Professor, Faculty of Medicine, Tehran University of Medical Sciences, Tehran, Iran.
2- 2. Associate Professor, Department of Psychology, Psychology and Educational Science Faculty, University of Tehran, Tehran, Iran. ,
3- 3. Associate Professor, Faculty of Medicine, Tehran University of Medical Sciences, Tehran, Iran.
Abstract: (81 Views)
Background & Aims:
Multiple Sclerosis (MS) is a chronic, immune-mediated neurological disorder characterized by heterogeneous and often unpredictable symptoms. While clinical attention frequently focuses on observable neurological deficits and radiological findings, many individuals with MS experience a range of symptoms that are not outwardly visible. These invisible symptoms such as persistent fatigue, cognitive impairment, emotional distress, sensory disturbances, and sleep disruptions may be underestimated in clinical assessments and misunderstood in social contexts. The lack of visible indicators can contribute to invalidation, reduced social support, and psychological strain, thereby intensifying patients’ suffering. Despite the growing emphasis on patient-centered care, there remains limited qualitative understanding of how individuals with MS interpret and make meaning of these hidden experiences. The present study aimed to explore the underlying themes and lived experiences of patients with MS regarding their invisible symptoms, in order to deepen clinical insight into the subjective dimensions of the disease.
Method:
This qualitative study was conducted using a reflective thematic analysis approach as described by Virginia Braun and Victoria Clarke. Participants were selected through purposive sampling to ensure variation in age, treatment modality, and perceived disease severity. Twelve individuals diagnosed with MS were recruited from the Tehran MS Society during the spring and summer of 2025. Inclusion criteria included a confirmed diagnosis by a neurologist, the capacity to participate in an in-depth interview, fluency in Persian, and provision of informed consent. Individuals experiencing an acute relapse at the time of interview or significant cognitive impairment were excluded.
Data were collected through in-depth semi-structured interviews lasting between 45 and 90 minutes. The interview guide was developed based on relevant literature and expert consultation and included open-ended questions designed to elicit detailed personal narratives. Interviews began with a broad question inviting participants to describe the invisible symptoms they experienced during the course of their illness, followed by probing questions exploring emotional, cognitive, bodily, and social dimensions. All interviews were audio-recorded, transcribed verbatim, and analyzed concurrently with data collection. The analytic process followed six recursive phases: familiarization with the data, generation of initial codes, development of candidate themes, review and refinement of themes, definition and naming of themes, and production of the final report. Coding and theme development were conducted independently by two researchers and subsequently discussed to achieve consensus. Data saturation was considered achieved when no new meaningful codes or conceptual insights emerged; thematic repetition became evident after the tenth interview, and two additional interviews confirmed saturation. Credibility was enhanced through member checking, reflexive memoing, and the use of rich, illustrative quotations.
Results:
The mean age of participants was 35 years (range 21–52 years), including seven women and five men. Analysis yielded six interconnected themes representing the hidden dimensions of living with MS. The first theme, endless and unpredictable fatigue, described overwhelming exhaustion disproportionate to activity level and resistant to rest, severely disrupting daily functioning. The second theme, alienation from the body and intrusion of unfamiliar sensations, reflected a sense of estrangement from one’s own body accompanied by abnormal sensory experiences that were difficult to explain yet deeply unsettling.
The third theme, living under the shadow of fear and hypervigilance, captured a persistent state of anticipatory anxiety regarding symptom exacerbation and disease progression. Participants reported constant monitoring of bodily changes and uncertainty about the future. The fourth theme, loss of bodily control and associated shame, highlighted experiences of diminished physical control that led to embarrassment and social withdrawal. The fifth theme, cognitive slowing and self-doubt regarding intellectual abilities, encompassed difficulties in concentration, memory, and mental clarity, which undermined professional confidence and self-esteem. Finally, the theme of a distressing paradox—an exhausted body yet sleeplessness illustrated the coexistence of severe fatigue with insomnia, compounding both physical and psychological burden.
Conclusion:
Invisible symptoms exert profound effects on body image, self-concept, psychological well-being, and social participation among individuals with MS. These findings reveal that the burden of the disease extends beyond observable neurological impairment and includes complex subjective experiences that may remain unrecognized in routine clinical practice. Integrating systematic attention to patients’ cognitive, emotional, and experiential symptoms into clinical assessment may foster more comprehensive and empathetic care. Greater awareness among physicians and nurses of the impact of invisible symptoms can help reduce feelings of isolation, strengthen therapeutic relationships, and improve overall quality of life for people living with MS.
Finally, the results of this study show that the lived experience of patients is not limited to physical symptoms; therefore, adopting a biopsychosocial approach and interdisciplinary collaboration between neurologists, psychologists, and rehabilitation specialists is essential to improve the quality of life of patients.
Acknowledgements
The authors hereby sincerely appreciate all patients with multiple sclerosis who gave their time and trust to share their valuable experiences with the researchers. They also thank the officials and staff of the Tehran MS Association for their cooperation in the sampling process and coordination of the interview sessions.
Conflict of interest
The authors hereby declare that there is no conflict of interest regarding this article.
Ethical considerations
This study was conducted with the approval of the Ethics Committee of the University of Tehran under number (PSYE-202505-1124). Before the interviews began, the objectives and procedure of the study were fully explained to the participants, and written informed consent was obtained from them. Participants were assured that participation in the study was completely voluntary and that they could withdraw from the study at any stage without any consequences. In order to maintain confidentiality, all personal information was recorded in coded form and audio files were stored in secure systems. All stages of the study were conducted in accordance with the ethical principles set forth in the Declaration of Helsinki.
Author Contributions
The first author was responsible for the study design, data collection, conducting interviews, and writing the initial draft of the article. The second and third authors participated in the study design, supervised the data analysis process, critically reviewed the scientific content, and approved the final version of the article. All authors have read and approved the final version of the article and are responsible for the accuracy and integrity of the data.
Multiple Sclerosis (MS) is a chronic, immune-mediated neurological disorder characterized by heterogeneous and often unpredictable symptoms. While clinical attention frequently focuses on observable neurological deficits and radiological findings, many individuals with MS experience a range of symptoms that are not outwardly visible. These invisible symptoms such as persistent fatigue, cognitive impairment, emotional distress, sensory disturbances, and sleep disruptions may be underestimated in clinical assessments and misunderstood in social contexts. The lack of visible indicators can contribute to invalidation, reduced social support, and psychological strain, thereby intensifying patients’ suffering. Despite the growing emphasis on patient-centered care, there remains limited qualitative understanding of how individuals with MS interpret and make meaning of these hidden experiences. The present study aimed to explore the underlying themes and lived experiences of patients with MS regarding their invisible symptoms, in order to deepen clinical insight into the subjective dimensions of the disease.
Method:
This qualitative study was conducted using a reflective thematic analysis approach as described by Virginia Braun and Victoria Clarke. Participants were selected through purposive sampling to ensure variation in age, treatment modality, and perceived disease severity. Twelve individuals diagnosed with MS were recruited from the Tehran MS Society during the spring and summer of 2025. Inclusion criteria included a confirmed diagnosis by a neurologist, the capacity to participate in an in-depth interview, fluency in Persian, and provision of informed consent. Individuals experiencing an acute relapse at the time of interview or significant cognitive impairment were excluded.
Data were collected through in-depth semi-structured interviews lasting between 45 and 90 minutes. The interview guide was developed based on relevant literature and expert consultation and included open-ended questions designed to elicit detailed personal narratives. Interviews began with a broad question inviting participants to describe the invisible symptoms they experienced during the course of their illness, followed by probing questions exploring emotional, cognitive, bodily, and social dimensions. All interviews were audio-recorded, transcribed verbatim, and analyzed concurrently with data collection. The analytic process followed six recursive phases: familiarization with the data, generation of initial codes, development of candidate themes, review and refinement of themes, definition and naming of themes, and production of the final report. Coding and theme development were conducted independently by two researchers and subsequently discussed to achieve consensus. Data saturation was considered achieved when no new meaningful codes or conceptual insights emerged; thematic repetition became evident after the tenth interview, and two additional interviews confirmed saturation. Credibility was enhanced through member checking, reflexive memoing, and the use of rich, illustrative quotations.
Results:
The mean age of participants was 35 years (range 21–52 years), including seven women and five men. Analysis yielded six interconnected themes representing the hidden dimensions of living with MS. The first theme, endless and unpredictable fatigue, described overwhelming exhaustion disproportionate to activity level and resistant to rest, severely disrupting daily functioning. The second theme, alienation from the body and intrusion of unfamiliar sensations, reflected a sense of estrangement from one’s own body accompanied by abnormal sensory experiences that were difficult to explain yet deeply unsettling.
The third theme, living under the shadow of fear and hypervigilance, captured a persistent state of anticipatory anxiety regarding symptom exacerbation and disease progression. Participants reported constant monitoring of bodily changes and uncertainty about the future. The fourth theme, loss of bodily control and associated shame, highlighted experiences of diminished physical control that led to embarrassment and social withdrawal. The fifth theme, cognitive slowing and self-doubt regarding intellectual abilities, encompassed difficulties in concentration, memory, and mental clarity, which undermined professional confidence and self-esteem. Finally, the theme of a distressing paradox—an exhausted body yet sleeplessness illustrated the coexistence of severe fatigue with insomnia, compounding both physical and psychological burden.
Conclusion:
Invisible symptoms exert profound effects on body image, self-concept, psychological well-being, and social participation among individuals with MS. These findings reveal that the burden of the disease extends beyond observable neurological impairment and includes complex subjective experiences that may remain unrecognized in routine clinical practice. Integrating systematic attention to patients’ cognitive, emotional, and experiential symptoms into clinical assessment may foster more comprehensive and empathetic care. Greater awareness among physicians and nurses of the impact of invisible symptoms can help reduce feelings of isolation, strengthen therapeutic relationships, and improve overall quality of life for people living with MS.
Finally, the results of this study show that the lived experience of patients is not limited to physical symptoms; therefore, adopting a biopsychosocial approach and interdisciplinary collaboration between neurologists, psychologists, and rehabilitation specialists is essential to improve the quality of life of patients.
Acknowledgements
The authors hereby sincerely appreciate all patients with multiple sclerosis who gave their time and trust to share their valuable experiences with the researchers. They also thank the officials and staff of the Tehran MS Association for their cooperation in the sampling process and coordination of the interview sessions.
Conflict of interest
The authors hereby declare that there is no conflict of interest regarding this article.
Ethical considerations
This study was conducted with the approval of the Ethics Committee of the University of Tehran under number (PSYE-202505-1124). Before the interviews began, the objectives and procedure of the study were fully explained to the participants, and written informed consent was obtained from them. Participants were assured that participation in the study was completely voluntary and that they could withdraw from the study at any stage without any consequences. In order to maintain confidentiality, all personal information was recorded in coded form and audio files were stored in secure systems. All stages of the study were conducted in accordance with the ethical principles set forth in the Declaration of Helsinki.
Author Contributions
The first author was responsible for the study design, data collection, conducting interviews, and writing the initial draft of the article. The second and third authors participated in the study design, supervised the data analysis process, critically reviewed the scientific content, and approved the final version of the article. All authors have read and approved the final version of the article and are responsible for the accuracy and integrity of the data.
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