Objective: to understand the meanings given by women and men with sickle cell disease on the illness experience. Method: analytical study with a qualitative approach, conducted with 17 adults with sickle cell disease using the Theory Based on Data, or Grounded Theory, as theoretical-methodological referential. Data were collected between the years of 2012 and 2013, in an individual in-depth interview. All the interviews were recorded and analyzed according to the Grounded Theory comparative analysis technique. Results: data show four categories which group the experience of illness, the feelings experienced and the path to living with sickle cell disease. Conclusions: it was possible to understand that the experience was built by a process in which these people redefined the meaning of their lives, applying new directions to life and to care regarding the experience of the illness. In the context of chronic disease, the nurse's care is also seen in this study as a foundation, providing attention, directions, and guidance through the required confrontations. Understanding the experience lived by these people, it is possible to enlarge the dimensions and the essence of nursing care required throughout life.

Objective: To determine the experience of sick individuals with sickle cell anemia and their self-care strategies. Methods: This was a qualitative study of 17 individuals with sickle cell anemia. Data collection and analysis occurred simultaneously by open codification and categorization, according to steps in the theory based on data. This procedure led to the development of categories related to the experience of individuals who have sickle cell anemia and their self-care. Results: Experiences of patients who became chronically ill enabled the construction of strategies to better determine the disease, changes in daily life, and the manner in which it affects how patients observe and experience time. Also identified were specific skills for self-care that were developed from lessons learned and mistakes made. Conclusion: We found that individuals with sickle cell anemia had several favorable approaches for adapting to having become sick during adulthood. ResumoObjetivo: Conhecer as experiências do adoecimento de pessoas com anemia falciforme e suas estratégias para o autocuidado. Métodos: Pesquisa qualitativa realizada com 17 pessoas com anemia falciforme. A coleta e a análise dos dados ocorreram simultaneamente, realizando-se a codificação aberta e sua categorização, segundo os passos da Teoria Fundamentada nos Dados. Tal procedimento deu origem a categorias relativas à experiência do adoecimento de pessoas com anemia falciforme e autocuidado. Resultados: As experiências com o adoecimento crônico possibilitaram a construção de estratégias para conhecer melhor a doença, determinaram mudanças na vida cotidiana, e afetaram o modo como cada pessoa observa e vivencia o tempo e como as habilidades específicas para o autocuidado foram desenvolvidas a partir dos aprendizados e deslizes cometidos. Conclusão: Constatou-se que as pessoas com anemia falciforme apresentaram vários elementos favoráveis em busca de adaptação ao adoecimento na fase adulta.