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

BACKGROUND: 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