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Creating visibilty for chronic illness a photovoice study on the experiences of individuals living with lupus
As the diagnosis of autoimmune disorders rise, the need for awareness, education, and understanding of such diseases will also rise. Results from both qualitative and quantitative studies provide evidence of the relationship between a lupus diagnosis with body image, quality of life and depression. This study uses a community-based participatory action framework where data and knowledge are derived from community members instead of the researchers. Analysis of the images and descriptions, especially in the context of the literatures on chronic illnesses, support the utility of photovoice as a tool for understanding how individuals with lupus live with this chronic disease. The five main themes found were the reality of lupus itself and all the symptoms it brings; how participants view medication and treatment; the fight with depression; how they undertake stigma from society and steps they take to maintain resiliency. These helping professionals can ask more relevant questions and help the patient find ways to cope with the disease such as utilizing pet therapy, connecting with their faith affiliations if applicable, asking about their support system, and connecting to those in their community with similar experiences. There are great tools the participants are using to cope with lupus, if helping professionals bring this into conversation during their visit, it could make a difference in stress levels which can influence the probability of experiencing a flare up or not. Making a difference starts with listening to the individual and meeting them where their needs are lacking.