Research in lipoedema: Weight stigma, compassion and mental health

By Chantelle Clarke

It is great to be able to share with you, the reader, a bit more about research currently being conducted around lipoedema. I am an emerging researcher currently completing a Ph.D. at the NeuroHealth Lab (within the Appleton Institute, CQUniversity Australia) exploring the psychological impact of living with lipoedema. For some time I have been concerned about the experience that many women face when misunderstood and often misdiagnosed as part of lipoedema. The significant toll this condition takes on physical and mental health and the options available to support health are not well understood. It has become very clear that research is needed to better raise awareness and increase options for supporting health in lipoedema.

In my Ph.D. research, I wanted to use my knowledge and skills of integrated models of physical and mental health to understand the mental distress that women with lipoedema experience and to find tools and strategies they can use to support their health. Some of my research (based on analysis of international secondary data provided by Tilly Smidt), recently presented at the British Lymphology Society Conference (BLS2021) [1], demonstrated the impact lipoedema has not only on physical health, but also the negative impact on psychological well-being as individuals struggle with living with lipoedema. The study provided a clearer picture of the types of experience individuals face within different stages of lipoedema, with those of higher stages more likely to experience difficulties with mobility, depression, eating disorders and social isolation than those of stages 1-2 [1].

More recently, I presented findings at the APS College of Health Psychologists Conference [2] on the link between depression and experiences of lipoedema-related health care with General Practitioners. As many readers are aware, there is often a long road in health care to a diagnosis of lipoedema and many individuals in the study reported being treated negatively due to their weight/lipoedema. Of the 1,321 individuals with lipoedema that took part in the study, less than 25% reported that their General Practitioner knew about lipoedema, 30% reported their General Practitioner actively dismissed lipoedema and 53% reported they had been mistreated due to their weight which was linked to a higher incidence of depression. And while depression was highly prevalent in lipoedema (39.8%) unfortunately only 35% of those that reported depression had sought psychological support. It is therefore important to both understand the link between weight stigma and mental health and identify appropriate and accessible psychological supports for those with lipoedema.

To assist in understanding the link between weight stigma and mental health in lipoedema, we are conducting an international online survey for women with lipoedema aimed at understanding how weight stigma influences mental health in this group. The ways in which weight stigma is experienced can vary and can include being excluded, stared at, or verbally and physically attacked, or experiencing job discrimination and environmental barriers (e.g., not fitting into seating on public transport) amongst others [3]. In addition, the more weight stigmatizing situations an individual experiences, the more likely they are to internalize weight bias and experience decreased mental health (e.g., eating disorders, social anxiety, and depression) [4-6]. Having a more compassionate rather than competitive and self-critical mindset may help buffer the influence of weight stigma on mental health, however some may need assistance in developing self-compassionate skills.

Accounting for the unique difficulties of this health condition and understanding the pain and distress it causes, our second main research study is therefore conducting a clinical trial to support women and their experience of lipoedema through a 10-week online group compassion-focused therapy (CFT) program. Compassion is “a sensitivity to suffering in self and others with a commitment to try and alleviate it” [7]. CFT is a way of training individuals to foster a more compassionate mind that supports the body and mind with an ability to settle distress to manage pain and suffering and can lead to reduced shame, self-criticism, perceived pain, stress, depression, and anxiety [8-10]. This research is an important and exciting step in addressing the distress often experienced in lipoedema and supporting well-being in both body and mind.

Keep updated about my lipoedema-related research and recruitment posts as they occur by following my Facebook page Research: Lipoedema, Compassion and Psychological Well-Being.

Assist lipoedema research by participating in our online survey on weight stigma and mental health in lipoedema open to women over 18 years old with lipoedema internationally here.

Chantelle Clarke, BBus(HRM), BPsychSci(Hons)
Ph.D. Candidate in Psychology within the NeuroHealth Lab, Appleton Institute, School of Health, Medical and Applied Sciences, CQUniversity Australia
Google Scholar Profile

References

1. Clarke, C., Kirby, J., & Best, T. (October 3-5, 2021). Lipoedema and psychological well-being: A cross-sectional survey [Conference session]. British Lymphology Society Conference 2021 (BLS2021), Online.

2. Clarke, C., Kirby, J., & Best, T. (November 13-14, 2021). Depression and health care experiences in lipoedema: An international cross-sectional study [Conference session]. 2021 APS College of Health Psychologists Conference: Building health resilience during times of change. Australian Psychological Society, Online. LINK

3. Vartanian, L. (2015). Development and validation of a brief version of the Stigmatizing Situations Inventory. Obesity Science & Practice, 1(2), 119-125. http://doi.org/10.1002/osp4.11

4. Puhl, R., & Heuer, C. (2009). The Stigma of Obesity: A Review and Update. Obesity (Silver Spring, Md.), 17(5), 941-964.

5. Alberga, A. S., Russell-Mayhew, S., von Ranson, K. M., & McLaren, L. (2016). Weight bias: a call to action. Journal of eating disorders, 4, 34. https://doi.org/10.1186/s40337-016-0112-4

6. Puhl, R., & Heuer, C. (2009). The Stigma of Obesity: A Review and Update. Obesity (Silver Spring, Md.), 17(5), 941-964.

7. Gilbert, P. (2014). The origins and nature of compassion focused therapy. British Journal of Clinical Psychology, 53, 6-41. https://doi.org/10.1111/bjc.12043

8. Austin, J., Drossaert, C. H. C., Schroevers, M. J., Sanderman, R., Kirby, J. N., & Bohlmeijer, E. T. (2020). Compassion-based interventions for people with long-term physical conditions: A mixed methods systematic review. Psychology & Health, 1-27. https://doi.org/10.1080/08870446.2019.1699090

9. Carter, A., Steindl, S., Parker, S., Gilbert, P., & Kirby, J. (2021). Compassion focused therapy to reduce body weight shame for adults categorized as obese: A randomized controlled trial [Conference session]. 2021 APS College of Health Psychologists Conference: Building health resilience during times of change. Australian Psychological Society, Online. LINK

10. Kirby, J. N., Tellegen, C. L., & Steindl, S. R. (2017). A meta-analysis of compassion-based interventions: Current state of knowledge and future directions. Behavior Therapy, 48(6), 778-792.

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