Today, we are going to talk about a study by researchers in Norway. The paper is called Younger Women with Lipedema, Their Experiences with Healthcare Providers, and the Importance of Social Support and Belonging: A qualitative study. As their title suggests, this qualitative study explored women’s experiences with healthcare providers and the importance of social support and belonging, with a special focus on younger women.
It was published in the peer-reviewed journal International Journal of Environmental Research and Public Health in January 2023.
How did they recruit participants?
This study recruited women for participation using a Facebook group administered by a patient organization, the Norwegian Patient Association for Lymphedema and Lipedema. A lipedema diagnosis given by a healthcare professional, and age between 18 to 50 years were the two criteria to be included in the study.
On the other hand, those who had severe pathology (malignancy), cardiovascular conditions or immune system diseases, severe psychiatric disorders or personality disorders, or were pregnant, gave birth, or were breastfeeding in the last year were excluded from the study.
Who were the participants?
15 women with lipedema were included in the study, with an average age of 36.2 years, ranging from 21 to 47. In terms of educational level, 2 of the participants had vocational training, while 13 had a higher level of education. Ten were married or in a relationship, 5 were single, and 7 of the women have children. Ten of the participants were employed full-time or part-time, 4 were students, and 1 received a disability allowance.
How did they collect data?
A semi-structured interview using open-ended questions conducted over the phone was used to obtain information about the experiences of the participants. Interviews were transcribed verbatim and then were examined for themes from the four main areas of study. Each interview took 20 to 50 minutes.
Questions were asked in four (4) main categories:
- Social background
- Experience of living with lipedema
- Social support
- Treatment options
What are the strengths of the Study?
The qualitative design investigating an area we have little knowledge of yielded rich narratives from the participants. The inclusion of younger women in their 20s and early 30s is a new population that has not been studied, and provided new perspectives. The study also specifically sought participants’ views on encounters with healthcare providers, social support, and belonging. The sample size was adequate as no new major themes came up during the last few interviews.
What are the limitations of the Study?
Data regarding when the participants were diagnosed with lipedema or the stage or severity of the disease was reported in the paper. The interviews were performed via telephone, and thus body language could not be observed. (However, this may have been an advantage because the women may have felt more comfortable sharing their thoughts and experiences. Doing it by phone also allowed the researchers to include women from all areas of Norway.) Most of the women also had a higher level of education and were either employed full-time or part-time, so the results may only be generalized to women who fit this description.
What are the results?
Two main themes concerning the experiences of women with lipedema emerged from the analysis:
- How young women with lipedema experience meeting with healthcare providers
- The importance of social support and the need to belong
Theme 1: How Young Women with Lipedema Experience Meeting with Healthcare Providers
Subthemes
(1) Various reactions to receiving a diagnosis
Participants reported going to many healthcare providers searching for answers, only to leave feeling “helpless, not being taken seriously, overlooked, and left to themselves.”
Finally getting a diagnosis was somewhat of a double-edged sword. While it was a relief to have a name for their experience and to learn it was not their fault, they also experienced despair because the condition was described as chronic, progressive, and without a cure. They also expressed anger that the diagnosis had taken so long and that they had already endured years of inadequately managed symptoms.
(2) Misconceptions about the illness
Participants described being labeled “lazy” and not really trying to lose weight. Many reported that they had been prescribed weight-loss pills, told to exercise more, and pressured to get weight-loss surgery.
The authors stated that “several of the women described that they felt like they were disrespected and not being treated in a professional manner during meetings with specialists.” They felt stigmatized by a diagnosis of obesity and accused of their behavior having caused their condition. Even after being given a lipedema diagnosis, healthcare providers did not seem to want to discuss any mental health issues and pressured them to get liposuction as that seemed to be the only thing that could help.
- Engagement and knowledge lead to appreciation
While most did not get their needs met by their healthcare provider, some did. The participants who were most satisfied with their care were the ones that felt they were seen and heard by their providers. Several specifically stated that being referred to and seen by a knowledgeable lymphatic therapist who suggested non-invasive management strategies such as MLD and compression as the most helpful.
Theme 2: The Importance of Social Support and the Need to Belong
Subthemes
- Self-confidence and romantic relationships are more challenging at a younger age
Participants in their 20s and early 30s reported more problems with self-confidence, self-esteem, and mental health issues than did the older participants in the study. The younger participants felt negatively about their bodies and were prone to eating disorders. This made romantic relationships and intimacy challenging. Participants in their 30s and 40s reported feeling this way when they were younger.
Participants who were in a monogamous relationship, whether married or not, reported these to be supportive, safe, and loving. Those participants who were single, however, found it challenging to find a partner because of their embarrassment about their bodies and fear of being touched because of pain.
- Social support is a necessity
Participants shared that having the support of their loved ones was important, but the biggest impact was the support and connections with other women who were also dealing with symptoms of lipedema. Several reported that being able to get ideas from others with lipedema and sharing their own experiences and suggestions had the most beneficial impact on living with this condition.
What were the conclusions?
- A feeling of belonging and social support is especially important when living with lipedema.
- Young women in their 20s and early 30s are especially vulnerable and in need of social support.
- By showcasing how women with lipedema experience meetings with healthcare providers, the authors hope that this study will increase the awareness of the stigma of a fat disorder.
- It is very important that healthcare providers treat women with respect and understanding.
- Raising awareness about lipedema may contribute to more frequent and earlier diagnoses.
- There is a great need for specialized healthcare services to take care of women with lipedema in a timely and professional manner.
- Young women with lipedema commonly live with shame and stigma.
- Meetings with healthcare providers were often characterized by the provider having a lack of knowledge about lipedema and holding misconceptions about the illness being self-inflicted.
- Younger women (in their 20s and early 30s) struggle more often with feelings of grief when receiving their diagnosis (as compared to women of higher age).
- Younger women also reported lower self-esteem and lack of self-confidence that made them uncomfortable in intimate settings with new partners.
- Women in long and stable relationships felt safe and supported more often than those who were single.
- Those with good social support from friends, family, or more importantly, being a member of a patient organization expressed this as being necessary to cope with their situation.
My takeaways from this study
This study contributed a great deal to our understanding of what it is like to live with lipedema, particularly for younger women. Hopefully, this work will lead to improved awareness, earlier diagnosis, and more timely treatment of lipedema. But most of all, because of what this study adds to the narrative about lipedema, it may mean that healthcare providers will be able to care for those with this condition with greater compassion.
For more updates on the latest research regarding lipedema, check out Lipedema Simplified’s Flash Briefings. It’s our daily mini-podcast where we share tips, tools, and research pertaining to Lipedema.
~Leslyn