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Background <p>Stigmatization in MS patients is an important problem that affects social interaction, work life and daily life. In this study, we investigated the prevalence, severity and especially the effects of stigmatization on work life in MS patients.</p> Methods <p>A cross-sectional study of 420 people living with MS (PwMS) assessed stigma using the NeuroQoL Stigma Short Form and a direct stigma survey. Demographic, clinical, workplace, and social data were collected through an online survey. Statistical analyses were performed.</p> Results <p>Stigma was prevalent, with 77% reporting stigma in direct surveys and 67.6% scoring &gt; 8 on the NeuroQoL Stigma Short Form. Stigma was more severe in patients with progressive MS and higher EDSS scores. The most disturbing symptoms were fatigue (73.3%), imbalance (46.7%) and attention deficit 50.5%). The most prominent complaint affecting work life was fatigue (41.2%). Only 7.3% of the patients had sought psychological support for this issue. 57.4% of patients had disclosed their illness to their employer and 68.1% to their coworkers.</p> Conclusions <p>Stigma in MS is pervasive, linked to clinical severity, workplace challenges, and social withdrawal. Interventions targeting stigma’s psychological and social dimensions, along with workplace education and support are essential.</p>

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Understanding stigma in multiple sclerosis: workplace discrimination, social challenges and psychological impacts

  • 期刊论文

  • 发表日期：

    2025年6月24日

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  • Nazlı Gamze Bülbül,
  • Abdulkadir TUNÇ,
  • Sena Destan Bünül,
  • Serkan Demir,
  • Meral Seferoğlu,
  • Ali Özhan Sıvacı,
  • Selma AKSOY,
  • İpek Güngör Doğan,
  • Ülgen Yalaz Tekan,
  • Nefise Eda Arslanoğlu,
  • Samet Öncel,
  • Rıfat Erdem Toğrol,
  • Hüsnü Efendi

摘要

Background

Stigmatization in MS patients is an important problem that affects social interaction, work life and daily life. In this study, we investigated the prevalence, severity and especially the effects of stigmatization on work life in MS patients.

Methods

A cross-sectional study of 420 people living with MS (PwMS) assessed stigma using the NeuroQoL Stigma Short Form and a direct stigma survey. Demographic, clinical, workplace, and social data were collected through an online survey. Statistical analyses were performed.

Results

Stigma was prevalent, with 77% reporting stigma in direct surveys and 67.6% scoring > 8 on the NeuroQoL Stigma Short Form. Stigma was more severe in patients with progressive MS and higher EDSS scores. The most disturbing symptoms were fatigue (73.3%), imbalance (46.7%) and attention deficit 50.5%). The most prominent complaint affecting work life was fatigue (41.2%). Only 7.3% of the patients had sought psychological support for this issue. 57.4% of patients had disclosed their illness to their employer and 68.1% to their coworkers.

Conclusions

Stigma in MS is pervasive, linked to clinical severity, workplace challenges, and social withdrawal. Interventions targeting stigma’s psychological and social dimensions, along with workplace education and support are essential.