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

ABSTRACT

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.

KEYWORDS:

• Lipedema
• women
• qualitative research
• content analysis
• body image

Acknowledgments

We want to thank all women who shared their experiences and the medical secretaries at the department for their help transcribing the interviews.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Availability of data and material

The data that support the findings of this study are available from the corresponding author, JD, upon reasonable request.

Additional information

Funding

The work was supported by the county council of Västerbotten, Sweden, and the Swedish Lipedema Foundation.

Notes on contributors

Johan Dahlberg

Johan Dahlberg (JD), MD., and Ph.D.-candidate at the Department of Public Health and Clinical Medicine, Dermatology and Venereology, Umeå University, Sweden. He conducts his research in the field of lipedema.

Elisabet Nylander

Elisabet Nylander (EN), MD., Ph.D. and professor at the Department of Public Health, and Clinical Medicine, Dermatology and Venereology, Umeå University, Sweden, and her research addresses topics concerning sexually transmitted diseases, genital dermatosis, and lipedema.

Margareta Persson

Margareta Persson RNM, Ph.D. and associate professor in Reproductive and Perinatal Health at the Department of Nursing, Umeå University, Sweden, and her research addresses topics concerning women’s health.

Alexander Shayesteh

Alexander Shayesteh (AS), MD., Ph.D. at the Department of Public Health and Clinical Medicine, Dermatology and Venereology, Umeå University, Sweden. He conducts research in primary hyperhidrosis and lipedema.