An uncertain uphill battle – experiences and consequences of living with lipedema

Purpose To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach. Results The overarching theme, “An uncertain...

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Bibliographic Details
Main Authors: Johan Dahlberg, Elisabet Nylander, Margareta Persson, Alexander Shayesteh
Format: Article
Language:English
Published: Taylor & Francis Group 2024-12-01
Series:International Journal of Qualitative Studies on Health & Well-Being
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Online Access:http://dx.doi.org/10.1080/17482631.2023.2300152
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Summary:Purpose To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach. Results The overarching theme, “An uncertain uphill battle against a divergent body and societal ignorance”, covers the experiences of living with lipedema and is based on five categories; “Captivated by a disintegrating body”, “Face the impairments of a chronic condition”, “Experience social exclusion”, “Need emotional support to go on” and “Mull over an insecure future”. The women felt entrapped within their bodies and experienced social exclusion due to the chronic symptoms and the progressive body shape alteration caused by their illness. Having experienced deficient information on the illness, varying support from other people, and a deteriorating economic situation, the women face an uncertain future. Conclusions Symptoms and restrictions caused by lipedema affect women’s livelihood and future, as there are no indications for disease improvement. Preventive work aimed at reducing health deterioration should be a priority. More research is needed to raise healthcare awareness regarding difficulties experienced by patients with lipedema.
ISSN:1748-2623
1748-2631