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 social functioning and emotional well-being were found. In this study, participants generally reported a strong perception of social support, with having particularly good support from significant others (i.e., perceived support from a particular person who is not a family member or friend). Moreover, we found that the association between higher levels of social support and better emotional well-being was significant.

Conclusion

The challenges associated with diagnosis delay and the low satisfaction with healthcare underscore an urgent need for healthcare improvements in the management of lipoedema. The impact health-related stigma and social support have on various aspects of functioning and well-being in women with lipoedema is crucial to acknowledge and address in healthcare to enhance the affected women's quality of life.