RESUMO
INTRODUCTION: Progressive neurological disorders require continual adaptation. People who maintain a better psychological balance in the face of the disease are those who find meaning in their experience. The ability to find a positive meaning in having multiple sclerosis (MS) is more common in people who are at the beginning of their disease or those who have few functional limitations (Pakenham, 2008). This qualitative study examines the process of meaning-making by people who are moderately to severely affected by MS. METHODS: Eight participants told the story of their experiences in individual semi-structured interviews. The verbatim transcripts were subjected to phenomenological analysis. RESULTS: The results allowed the identification of the essential elements that shape the experience of meaning-making. The adaptation happens in two main areas: (1) limiting the impact of specific symptoms, and (2) investing in activities that combine meaningful relationships and the feeling of being useful. Meaning is developed in the search for a new existential balance that reconciles creative tensions, particularly in the oscillation between letting go and determination. The process of meaning-making is distributed along a continuum of strategies that allows one to act as if nothing had happened, act within the limits of the disease, act despite the disease, act in new ways because of the disease, or act thanks to the disease. CONCLUSIONS: Understanding the process of meaning-making while adjusting to MS can allow the identification of possible interventions to better accompany people who are most severely affected by MS in their adaptation to the disease.