Objectives Treatment of open fractures is complex and patients may require muscle and skin grafts. The aim of this study was to gain a greater understanding of patient experience of recovery from open fracture of the lower limb 2–4 years postinjury.

Design A phenomenological approach was used to guide the design of the study. Interviews took place between October 2016 and April 2017 in the participants’ own homes or via telephone.

Setting England, UK.

Participants A purposive sample of 25 patients were interviewed with an age range of 26–80 years (median 51), 19 were male and six female, and time since injury was 24–49 months (median 35 months).

Results The findings identified a focus on struggling to recover as participants created a new way of living, balancing moving forward with accepting how they are, while being uncertain of the future and experiencing cycles of progress and setbacks. This was expressed through three themes: (i) ‘being disempowered’ with the emotional impact of dependency and uncertainty, (ii) ‘being changed’ and living with being fragile and being unable to move freely and (iii) ‘being myself’ with a loss of self, feeling and looking different, alongside recreation of self in which they integrated the past, present and future to find meaningful ways of being themselves.

Conclusion This study identified the long-term disruption caused by serious injury, the hidden work of integration that is required in order to move forward and maximise potential for recovery. Supportive strategies that help people to self-manage their everyday emotional and physical experience of recovery from injury are required. Research should focus on developing and testing effective interventions that provide support and self-management within a holistic rehabilitation plan.

Trial registration number Current Controlled Trials ISRCTN33756652; Post-results.