Navigating Life With Multiple Sclerosis in Denmark: From First Symptoms to Long-Term Management

Introduction: Being diagnosed with multiple sclerosis (MS) marks a significant turning point in a person’s life, with substantial impact on quality of life. Key aspects of effective treatment include how people with MS are cared for and their adherence to treatment. This study aimed to investigate the lived experiences of people with MS.

Methods: The study was guided by a phenomenological and hermeneutic approach. Thirteen semistructured face-to-face interviews were conducted with people diagnosed with MS within the past 5 years who were recruited from 3 Danish MS clinics. A reflexive thematic analysis approach was applied to analyze and interpret the data.

Results: The transition from being a healthy person to a person living with an MS diagnosis is challenging. Our analysis revealed that people with MS were particularly vulnerable during the diagnostic process and often shared emotionally impactful experiences. After diagnosis, they adjusted to new priorities and demonstrated resilience, finding ways to navigate life with MS. We identified 3 key themes from the interviews: understanding and proving symptoms, considering treatment and how to disclose MS, and living hopefully with MS.

Conclusions: Interviewees living with MS in Denmark frequently mentioned challenging symptoms and diagnostic complexity, as they often felt misunderstood when trying to explain their symptoms. For health care professionals, understanding patients’ experiences from initial symptoms to diagnosis and treatment is crucial. The resilience and adaptation of people with MS highlight the importance of holistic approaches to treatment, which foster their hopes for the future.