Healthcare experiences, health-related stigma, and social support among Swedish women with lipoedema – results from a national survey

Lipoedema is a disease in adipose tissue associated with multiple health problems that negatively impact the quality of life. However, due to body appearance, the disease is frequently misunderstood as lifestyle-induced obesity, and the affected women are at risk of being fat-shamed and lacking prerequisite support from healthcare providers and other people. Although the negative impact lipoedema has on health and social life, research from the affected women´s perspective is relatively sparse. Therefore, we conducted a Swedish national survey to explore healthcare experiences, health-related stigma, and social support among women with lipoedema. Methods An online survey with closed and open questions assessing sociodemographic, lipoedema characteristics, health-care experiences, health-related stigma, and perceived social support was sent out to all Lipoedema Association groups across Sweden. Participants In total, 245 women with lipoedema responded to the survey. The majority of participants were aged 40-59, and over half were in lipoedema stage 3. Most of the women had a combination of lipoedema type 3 and type 4. Results The result showed that it often takes decades, including many healthcare visits, from disease onset to diagnosis. Moreover, participants reported an overall significantly lower patient satisfaction with healthcare compared to a general Swedish female population. Especially low scores were found in the dimensions of Emotional support, Continuity and coordination, and Information and knowledge, which related to participants’ dissatisfaction with healthcare providers’ availability, responsiveness, commitment, and compassion for the patient’s worries and needs. Furthermore, compared to a general Swedish female population, women with lipoedema scored significantly more health-related social impairment. When analyzing data for stigma and health-related quality of life, significant correlations across higher levels of stigma and lower physical and so