Disclosing disability in the employment setting: Perspectives from workers with multiple sclerosis

BACKGROUND: Individuals must disclose their disability to their employer to benefit from work accommodations. Since individuals with multiple sclerosis often have “invisible” symptoms, they must decide whether or not to disclose their diagnosis to employers and whether the perceived benefits are worth the perceived risks. OBJECTIVE: The purpose of this study was to identify factors that may influence the decision to disclose disability to an employer and the consequences of disclosure for participants with multiple sclerosis (MS). METHODS: Qualitative analysis was conducted using narratives from 8 focus groups held in three US states (South Carolina, Georgia and Ohio). All participants (N = 74) were 18 years of age or older, spoke English, and had worked after MS diagnosis, although not all were employed at the time of the study. In focus groups sessions, participants were asked “Did you decide to tell your employer about your MS? If so, how did it impact either finding or maintaining employment?” RESULTS: Narrative responses indicated eight themes that fell into two categories: decision to disclose and consequences of disclosure. In the category of Decision to Disclose, themes included (1) disclosing to explain, prepare, or educate, (2) general disclosure, no concerns, (3) limiting, delaying, or deciding not to disclose, and (4) unsure about future disclosure. Within Consequences of Disclosure, themes included (5) positive and supportive reactions, (6) mixed or variable reaction in the same work environment, (7) no real reaction, positive or negative, and (8) leading to termination of employment. CONCLUSION: Our findings shed important light on the diversity of considerations and impact on employment of disclosing disability in the workplace for those with MS and highlight the importance of individuals’ feeling that they have control over the process.