Monday, 5 February 2018

Living with lupus


Roger Watson, Editor-in-Chief

According to NHS Choices: 'Systemic lupus erythematosus (SLE) – lupus – is a long-term condition causing inflammation to the joints, skin and other organs. There's no cure, but symptoms can improve if treatment starts early. The aim of this study from Denmark was to: 'explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus'. The study findings are reported in an article by Lisander et al. (2018) titled: 'The Existential Experience of everyday life with Systemic Lupus Erythematosus' and published in JAN.

Fifteen women diagnosed with lupus were interviewed and it was clear that this was an episodic condition which when  it 'was flaring, well-being was threatened and a laborious time to escape the feeling of a setback-in-life persisted long after the disease was medically under control'. One woman said: '(t)o live with it and
to avoid it dominates everything. Because it affects your everyday life...' while another described how good life could be without it but said : '...I know if I suddenly get something. Then everything is on at a standstill again and it takes time before I resurface'. Women reported losses, such as a career: 'It has to do with replacing the loss, if you can put it that mundanely. The loss was a working life. It took me many
years to accept that I would never be engaged within my profession again'. 

The authors concluded: 'Generally, the findings underscore the importance of policy makers and healthcare professionals being aware of and acting according to the influence of chronic illness on life, the changes that  occur in life and especially chronically ill patients’ unique needs for care and support from diagnosis and onwards',

You can listen to this as a podcast

Reference

Larsen, J. L., Hall, E. O. C., Jacobsen, S. and Birkelund, R. (2018), The Existential Experience of everyday life with Systemic Lupus Erythematosus. J Adv Nurs. doi:10.1111/jan.13525

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