Lipedema is a poorly understood disorder that primarily affects females. It is characterized by excessive and disproportionate fat, usually in the lower body, pain/heightened sensitivity, and other unique skin and tissue changes. A holistic and individualized approach to healing and management of lipedema symptoms can optimize outcomes for people affected by this condition.

Lipedema affects all facets of life and can have an impact on everyone involved in the life of someone with lipedema. Because there is such a variety of presentations of lipedema in conjunction with each person’s particular situation, such as other social, economic, cultural, and physical influences on health, individualizing treatment and support is crucial.  

For these reasons, a holistic approach can be very important.  Although five different aspects of the holistic approach are described here, it is important to note that there is a great deal of overlap between each aspect.  We are not made up of individual compartments but are an integrated whole.

Physical Aspect

The physical aspect of the holistic model focuses on reducing or eliminating the physical symptoms of lipedema and their consequences. This may include reducing pain, improving or regaining mobility, increasing tolerance to physical activity and movement, and managing weight.  It may be necessary to address other health conditions, such as obesity or hypothyroidism, to lessen the impact these may have on lipedema symptoms and quality of life (Ghods et al., 2020).

Effective interventions for managing the physical aspects can include:  Complete Decongestive Therapy (CDT) provided by a certified lymphedema therapist, aquatic activity, compression garments, pneumatic pumps, and proven nutrition strategies such as low carb and ketogenic diets (Keith et al., 2021; Jeziorek et al., 2023).

Mental/Psychological Aspect

The mental and psychological aspects of the holistic model can focus on remedying mental health issues, such as depression and anxiety, common comorbidities of lipedema (Alwardat et al., 2020).  Intervention should also focus on providing education and increasing awareness about lipedema as a disease.  Individuals want to understand lipedema and its care to better understand the condition and to learn how to manage it.  Educating both patients and healthcare providers about lipedema will ensure an accurate and timely diagnosis as well as appropriate referrals for treatment. Understanding the condition, its symptoms, and treatment options is the first step toward effective management.

Interventions that address the mental/psychological aspect may include seeking care from a counselor, psychologist, or other mental health practitioner to learn strategies for dealing with depression, anxiety, post-traumatic stress disorder, or panic attacks.  Programs may be in-person or virtual and can be one-on-one or in groups. Attending educational workshops, seminars, conferences, and webinars about lipedema or other chronic conditions can improve one’s ability to cope with the challenges of the condition.

Emotional Aspect

Because individuals with lipedema are dealing with a chronic condition that can be disfiguring, they may isolate themselves from others.  Limited outside help can increase the challenge of dealing with the day-to-day needs that arise from a diagnosis of lipedema and increase the emotional burden.  This may result in feeling completely overwhelmed and developing a sense of hopelessness. Even more so, these feelings can be compounded by experiencing anti-fat bias, widespread in healthcare, which can give rise to long-lasting feelings of shame, blame, and guilt (Seo, 2014). 

Similar to intervention strategies used in the Mental/Psychological Aspect, individuals may seek care from a mental health practitioner to help with developing a healthy mindset for dealing with a complex and challenging chronic condition like lipedema. A crucial part of addressing the emotional aspect is to achieve a balance between adherence to self-care activities and having a life outside of managing lipedema (Dudek et al., 2016). Peer-to-peer support can help the individual with lipedema to not feel so alone.  Knowledgeable practitioners can help those with lipedema to restore and build feelings of self-compassion, acceptance, and understanding (Dudek et al., 2021).  

Spiritual Aspect

Individuals with lipedema may begin to feel that their condition defines them, causing them to disconnect with others and themselves.  This can foster feelings of separateness, worthlessness, and despair.  Without a sense of purpose and connection to the world, all of the self-care necessary for managing lipedema symptoms can seem fruitless.

Spiritual wellness begins with an inner knowing that we are naturally resourceful, creative, and already whole.  Insight into one’s self allows an expansion of that knowing to include others, creating a network of awareness and understanding.  Dr. Matthew Carmody, Medical Advisor for Lipedema Simplified, reminds us, “the wisdom is within each of us.” 

The spiritual aspect of the holistic approach urges self-reflection, life balance, and the development of a sense of meaning and purpose.  This might be achieved by spending time alone or with others in nature, practicing quiet time or meditation, or doing activities that promote a sense of flow (losing oneself while immersed in an activity) (Csikszentmihalyi et al., 2018).  Some may feel a deep connection to the world when birdwatching, stargazing, or knitting a sweater; others may feel a strong link to the greater good by volunteering to be part of a lipedema research study. 
         

Social Aspect

Until they learn about lipedema, most individuals with this condition believe that they alone have an unusual form of obesity that does not respond to traditional weight loss attempts.  Even after diagnosis, constantly explaining their condition to friends and family can become burdensome.  

The social aspect of the holistic approach recognizes the importance of community.  Receiving support and understanding from peers can be a significant part of the healing and growth process.  Feelings of isolation are replaced with a deep and often lasting connection to a larger community.

Lipedema Simplified’s Lipedema Tribe is one such community and has become a place to go for resources, information, guidance, and acceptance.  Members can share and support others without having to explain: other Tribe members just know.  

         
Conclusion

The holistic approach describes a model where care is concerned with more than the physical side of lipedema management, but also addresses other aspects and looks at the person as a connected whole.  A guiding principle is that those with lipedema are not destined to be victims of their own disease, but rather that they have agency and power within their own story.  

References

Alwardat, Nuha, et al. (2020). The effect of lipedema on health-related quality of life and psychological status: a narrative review of the literature. Eating and Weight Disorders-Studies on Anorexia, Bulimia and Obesity, 25, 851-856.

Csikszentmihalyi, M. et al. (2018). Flow theory: Optimizing elite performance in the creative realm.

Dudek, J. et al. (2016). Quality of life in women with lipoedema: a contextual behavioral approach. Quality of Life Research. 25, 401-408.

Dudek, J. et al. (2021) Quality of life, its factors, and sociodemographic characteristics of Polish women with lipedema. BMC Women's Health, 21(1), 1-9.

Ghods, Mojtaba, et al. (2020). Disease progression and comorbidities in lipedema patients: A 10‐year retrospective analysis. Dermatologic Therapy, 33(6), e14534.

Jeziorek, et al. (2023). The effect of a low-carbohydrate high-fat diet on laboratory parameters in women with lipedema in comparison to overweight/obese women. Nutrients, 15(11), 2619.  

Keith, L., et al. (2021) Ketogenic diet as a potential intervention for lipedema. Medical Hypotheses, 146, 110435.

Seo, C. (2014). You mean it's not my fault: Learning about lipedema, a fat disorder. Narrative Inquiry in Bioethics 4(2), E6-E9.