Razi Journal of Medical Sciences

fa علائم غیرقابل مشاهده در بیماران مبتلا به ام‌اس: یک تحلیل تماتیک از تجربه زیسته بیماران Invisible Symptoms in Patients with Multiple Sclerosis: A Thematic Analysis of Patients’ Lived Experiences مغز و اعصاب Neurology پژوهشي Research <div style="text-align: justify;">زمینه و هدف: بیماران مبتلا به ام اس علائم مختلفی را تجربه می‌کنند. این علائم ممکن است به دلیل نداشتن نشانه‌های ظاهری کم‌تر مورد توجه قرار بگیرند. پژوهش حاضر با هدف درک مضامین زیربنایی و تجربیات زیسته این بیماران از علائم غیرقابل مشاهده خود انجام شد. روش کار: این مطالعه کیفی با روش تحلیل تماتیک بازتابی انجام شد. ۱۲ بیمار مبتلا به ام‌اس با استفاده از روش نمونه‌گیری هدفمند از میان مراجعین به انجمن ام‌اس تهران در بازه زمانی بهار و تابستان ۱۴۰۴ انتخاب شدند. داده‌ها از طریق مصاحبه‌های عمیق نیمه‌ساختاریافته جمع‌آوری و بر اساس الگوی شش‌گانه‌ای برون و کلارک تحلیل گردید. یافته‌ها: میانگین سنی مشارکت‌کنندگان ۳۵ سال (دامنه: ۲۱ تا ۵۲ سال) بود. تحلیل تماتیک داده‌ها به شناسایی شش تم اصلی انجامید که بیانگر لایه‌های پنهان تجربه زیسته بیماران بودند، شامل تجربه خستگی مداوم و غیرقابل پیش‌بینی، احساس بیگانگی با بدن و هجوم ادراک‌های ناآشنا، زیستن در سایه ترس و حالت گوش‌به‌زنگی مداوم، ادراک از دست دادن کنترل بدنی و شرم همراه آن، کندی شناختی و تردید در توانمندی‌های ذهنی، و تجربه تضاد میان خستگی جسمانی و بی‌خوابی. نتیجه‌گیری: نتایج نشان داد که علائم غیرقابل مشاهده تأثیر عمیقی بر تصویر بدنی و سلامت روان بیماران دارد و آنان را در معرض انزوا قرار می‌دهد. این یافته‌ها بر ضرورت توجه پزشکان و پرستاران به علائم ذهنی و روانی در کنار نشانه‌های عینی بیماری و اتخاذ رویکردی همدلانه در ارزیابی و مراقبت تأکید می‌کند.</div> <div style="text-align: justify;">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. Methods: 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.</div> مولتیپل اسکلروزیس, علائم غیرقابل مشاهده, تحلیل تماتیک Multiple Sclerosis, Invisible Symptoms, Lived Experience, Reflective Thematic Analysis, Qualitative Study 1 12 http://rjms.iums.ac.ir/browse.php?a_code=A-10-8636-1&slc_lang=fa&sid=1 Leila Rezaei لیلا رضایی 3900319475328460090994 0009-0000-1233-8920 No PhD Student, Department of Psychology, Psychology and Educational Science Faculty, University of Tehran, Tehran, Iran دانشجوی دکتری روان‌شناسی سلامت، دانشکده روان‌شناسی و علوم تربیتی، دانشگاه تهران، تهران، ایران Manijeh Firoozi منیژه فیروزی mfiroozy@ut.ac.ir 3900319475328460090995 3900319475328460090995 Yes Associate Professor, Department of Psychology, Psychology and Educational Science Faculty, University of Tehran, Tehran, Iran دانشیار، گروه روان‌شناسی، دانشکده روانشناسی و علوم تربیتی، دانشگاه تهران، تهران، ایران Seyed Ehsan Mohammadianinejad سید احسان محمدیانی نژاد 3900319475328460090996 3900319475328460090996 No Associate Professor, Faculty of Medicine, Tehran University of Medical Sciences, Tehran, Iran دانشیار، دانشکده پزشکی، دانشگاه علوم پزشکی تهران، تهران، ایران