‘A Nothing Disease?’ An Interpretive Phenomenological exploration of the lived experience of Systemic Lupus Erythematosus (SLE)
The purpose of this research study has been to gain a deeper understanding of the lived experience of systemic lupus erythematosus from the perspective of the person who has the condition. A qualitative interpretive phenomenological approach was adopted influenced by Heidegger (1962) with emphasis on existential and interpretive dimensions over time. This comprehensive study involved a varied and diverse sample of thirty-two participants to allow differing experiences and multiple voices to be heard. The main data collection method was multiple, unstructured interviews. The participants also used a variety of other methods of their own choice including journals, art, music and photography to express ‘what lupus means to you?’ An integrated approach was used combining both the media of the participant’s choice, with an in-depth unstructured interview discussing their media. These varied data collection methods allowed valuable insights into the participant’s everyday world. The study used Wertz’s (1983) method of analysis. Three main findings were identified including, self-doubt and doubt, entrapment and coping and regaining resilience. Self-doubt and doubt explores the participant’s ongoing uncertainty about their symptoms, embodiment and condition and the continual doubts which they experience from others regarding the reality of their illness experience. Entrapment explores the many constraints and barriers that the participants experience in everyday life including the disease itself which enforces loss of control, continual change and disruption, challenges to self identity and integrity, relationships with others and themselves in terms of existential possibilities and goals. There were also a multitude of constraints and barriers imposed on the participants from health services and organisations. All these experiences engender the feeling of a ‘nothing disease’, a feeling of losing themselves. Coping and regaining resilience explored the wealth of coping strategies used within the participant’s everyday life and the ways they had been able to overcome adversity and find ways of moving forward regaining resilience. The study has identified multiple things which negatively impact upon those living with lupus, as well as positively impacts on a person’s ability to live and cope in everyday life. This opens up possible ways for reducing these constraints and that would have a positive impact on the person living with SLE. These constraints indicate some of the priorities health services and organisations should be focusing on to assist those with lupus to regain a more homelike being-in-the-world. The findings have real implications for the development of health care delivery which is person centred, designed around real needs and enables an improved quality of life. This study has been a further important step towards gaining an in-depth understanding of the everyday being-in-the-world of SLE.
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