Mild multiple sclerosis challenges shape work experiences, affect self-concept, and are often trivialized despite disclosure

TL;DR

People with mild multiple sclerosis face work challenges that affect their self-image and employment, even though their condition is often dismissed.

Contribution

The study reveals how mild MS symptoms and work challenges are often trivialized, impacting self-concept and employment despite disclosure.

Findings

Work challenges faced by mildly disabled PwMS are often unspoken and lead to reduced work capacity.

Cumulative effects of mild MS symptoms and work stress impact self-confidence and job retention.

Maintaining a sense of capability helps PwMS sustain employment despite challenges.

Abstract

Despite mild disability, people with multiple sclerosis (PwMS) often face work-related challenges and reduced employment. Their experiences regarding work challenges are understudied.

To explore experienced work challenges and possibilities for sustained employment among employed PwMS with mild to moderate disability.

In-depth interviews with 26 employed PwMS analyzed using systematic text condensation guided by Goffman's theories on self and social interaction.

Three categories were developed: (1) unspoken work challenges, (2) the cumulative impact of mild MS symptoms on work challenges, and (3) disability and work challenges influence “who I am at work”. Communication about work challenges was often limited even when MS was disclosed. Most participants experienced difficulties related to cumulation and interplay of symptoms and work challenges, resulting in reduced work capacity, hours and negative thoughts about themselves, confidence and perceived prospects for job retention. Feeling capable in handling work tasks were believed to facilitate sustained employment.

Mildly disabled PwMS often trivialized and avoided addressing work challenges to maintain self-concept, social order and role at work, even after MS was disclosed. Recognizing and addressing mild symptoms and work challenges while maintaining self-concept, sense of capability and acceptance at work, may facilitate sustained employment.

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