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

Bülbül N. G., TUNÇ A., BÜNÜL S. D., Demir S., Seferoğlu M., Sıvacı A. Ö., ...Daha Fazla

Acta Neurologica Belgica, 2025 (SCI-Expanded, Scopus) identifier identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Basım Tarihi: 2025
  • Doi Numarası: 10.1007/s13760-025-02826-8
  • Dergi Adı: Acta Neurologica Belgica
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, EMBASE
  • Anahtar Kelimeler: Multiple sclerosis, Psychological support, Social interaction, Stigma, Workplace challenges
  • Kocaeli Üniversitesi Adresli: Evet

Özet

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.