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Background  Sickness absence is a multifaceted problem. Much is known about risk factors for being long-term sick-listed, but there is still little known about the various aftermaths and experiences of it. The aim of this qualitative study was to describe, analyze and understand long-term sickness-absent people’s experiences of being sick-listed.    Methods  The design was descriptive and had a phenomenological approach. Sixteen long-term sickness-absent individuals were purposively sampled from three municipalities in Sweden in 2011, and data were collected through semi-structured, individual interviews. The interview questions addressed how the participants experienced being sick-listed and how the sick-listing affected their lives. Transcribed interviews were analysed using Giorgi's phenomenological method.    Results  The interviews revealed that the participants’ experiences of being sick-listed was that they lost their independence in the process of stepping out of working society, attending the mandatory steps in the rehabilitation chain and having numerous encounters with professionals. The participants described that their life-worlds were radically changed when they became sick-listed. Their experiences of their changing life-worlds were mostly highly negative, but there were also a few positive experiences. The most conspicuous findings were the fact that stopping working brought with it so many changes, the participants’ feelings of powerlessness in the process, and their experiences of offensive treatment by and/or encounters with professionals.    Conclusions  Sick-listed persons experienced the process of being on long-term sickness absent as very negative. The negative experiences are linked to consequences of stopping to work, consequences of social insurance rules and to negative encounters with professionals handling the sickness absence. The positive experiences of being sick-listed were few in the present study. There is a need to further examine the extent of these negative experiences are and how they affect sick-listed people’s recovery and return to work. Long-term sickness absence; sick leave; experiences; interviews; phenomenology; Sweden.

Losing independence – the lived experience of being long-term sick-listed