Life on hold: the experience of living with neuromyelitis optica

Abstract

Purpose: Neuromyelitis optica (NMO) is a rare autoimmune condition characterised by acute relapses of optic neuritis and extensive transverse myelitis. The aim of this qualitative study was to develop an improved understanding of the experiences of people living with NMO. Method: Fifteen participants completed a semi-structured interview and data were interpreted using a constant comparative method. Participants were recruited from the Northern UK NMO Service. Results: Five major themes were identified: diagnosis and treatment, symptoms, adjustment, identity and support. Conclusion: Results suggest NMO is a difficult condition to live with due to the unpredictability of relapses and accrued disability of visual or spinal symptoms occurring with each relapse. Poor vision, reduced mobility, bladder dysfunction and pain affected participants’ independence and experience of living with NMO. Participants reported that during relapse and recovery they would “put their life on hold”. They identified the importance of periods of stability to enable them to adjust to their condition and therefore aim for “normality” of life that they believed was comparable to their peers.

Implications for Rehabilitation

• Disability due to NMO has a major impact on an individual's life, abilities and identity.

• Timely treatment of relapse is essential to reduce or prevent disability.

• Health care professionals need to coordinate care locally and nationally.

• Multi-disciplinary work is vital to promote adjustment, coping strategies and support for people living with NMO.

• Daily activities
• lived experience
• neuromyelitis optica
• qualitative research
• relapses

Acknowledgements

A special thank-you to all the participants for their time and honesty in participating in the interviews. Thanks to Chris Manley for her support, June Poston, Debbie Morris, Ellen Brady and Katie Paddock for their valuable comments.