Lymphedema, social connection and the negative health effects of loneliness
By Kathleen Helen Lisson, CLT
For many people with lymphedema, social isolation or lack of family support is often the reason behind why self-care activities to help treat lymphedema like intermittent pneumatic compression usage and garment donning and doffing cannot be completed. Unfortunately, the effects of poor social connection can affect far more than garment and pump usage.
The negative effects of lymphedema on well being are well established in the literature. In the article ‘Psychosocial impact of living with cancer-related lymphedema,’ Fu and Kang state that “early research showed that even moderate cancer-related lymphedema can have significant impact on individuals’ physical, functional, and emotional well-being, leading to a diminished overall health-related quality of life” and “several studies described that the sense of illness permanence and the chronicity of lymphedema elicited the feelings of fear, sadness, and loneliness” (2013).
Even if our client has someone to help treat lymphedema and assist them with Activities of Daily Living, loneliness can still be a serious health issue for people with lymphedema and their caregivers. Social connection is crucial to overall health. ‘Our Epidemic of Loneliness and Isolation: The U.S. Surgeon General’s Advisory on the Healing Effects of Social Connection and Community’ states that “social connection is an independent protective factor, and social isolation and loneliness are independent risk factors for several major health conditions, including
- cardiovascular disease,
- dementia,
- depression, and
- premature mortality from all causes” (2023).
Should people with lymphedema and their caregivers be concerned about loneliness? Tools like the UCLA Loneliness Scale are available online and can be a good way to start a conversation: https://fetzer.org/sites/default/files/images/stories/pdf/selfmeasures/Self_Measures_for_Loneliness_and_Interpersonal_Problems_UCLA_LONELINESS_REVISED.pdf
What else can health professionals who treat lymphedema do? The document ‘Our Epidemic of Loneliness and Isolation: The U.S. Surgeon General’s Advisory on the Healing Effects of Social Connection and Community’ recommends that health professionals “integrate social connection into patient care … settings by:
⚬ Actively assessing patients’ level of social connection to identify those who are at increased risk or already experiencing social disconnection and evaluate the level of necessary supports.
⚬ Educating patients about the benefits of social connection and the risk factors for social disconnection as part of primary prevention.
⚬ Leveraging interventions that provide psychosocial support to patients, including involving family or other caregivers in treatment, group therapies, and other evidence-based options” (2023).
Support groups can be very effective for both people with lymphedema and their caregivers, but convincing someone to try a support group can be difficult. This webinar sponsored by the Caregiver Coalition of San Diego gives details of the different beneficial aspects of caregiver support groups: https://youtu.be/3T35oWS_Ds8
What would it look like if lymphedema therapists incorporated social connection into lymphedema self-care management recommendations? What if our clients had these stories about caring for their breast cancer related lymphedema (BRCL):
“Active coping strategies included engaging in selfcare behaviors (e.g. not putting strain on the affected arm), using medical equipment as recommended, and attending support groups and medical appointments regularly. For instance, a participant engaged in several activities to help manage BCRL: ‘I have become more spiritual, involved in church, reading, I listen to music, and do yoga.’” (Buki et al., 2021).
Are we encouraging our patients to pursue their hobbies and movement practices that nourish their well being? The participant quoted above found benefit in her community and in her hobbies.
Where can we direct people with lymphedema to find more information?
The Lymphatic Education and Research Network (LE&RN) is a nonprofit dedicated to education, research, and advocacy to improve the lives of those affected by lymphedema and lymphatic diseases including efforts to secure ongoing Congressional and National Institutes of Health (NIH) support for lymphatic research and lymphatic diseases. If your patients would like to get involved and connect with people affected by lymphedema and lymphatic diseases in your community, encourage them to join your local LE&RN chapter. Find your local LE&RN chapter here: https://lymphaticnetwork.org/chapter-page
Kathleen Lisson is board certified in therapeutic massage and bodywork and is a Certified Lymphedema Therapist. She has spoken at the AVLS, FDRS, MLD UK, S4OM and NLN conferences. She is a coauthor of the Standard of Care for Lipedema in the United States and the author of six books, including Stress Reduction for Lymphedema. She lives with her husband Arun and their dog in sunny San Diego, CA. Find her on Instagram and Threads at @StressReductionForLymphedema
Resources:
Buki, L. P., Rivera-Ramos, Z. A., Kanagui-Muñoz, M., Heppner, P. P., Ojeda, L., Lehardy, E. N., & Weiterschan, K. A. (2021). “I never heard anything about it”: Knowledge and psychosocial needs of Latina breast cancer survivors with lymphedema. Women’s Health, 17, 17455065211002488. Retrieved from: https://journals.sagepub.com/doi/pdf/10.1177/17455065211002488
Fu MR, Kang Y. Psychosocial impact of living with cancer-related lymphedema. Semin Oncol Nurs. 2013 Feb;29(1):50–60. doi: 10.1016/j.soncn.2012.11.007. PMID: 23375066. Retrieved from: https://www.sciencedirect.com/science/article/pii/S0749208112000861?casa_token=HtAa2o_fz7AAAAAA:l71FHqK9FcFSwoiID-Jz4VaG5hRJOcw2oKO8Qa7S6Kr1SS_tVdnK953DyhVXbBz-3Wl5S_p0eQ
‘Our Epidemic of Loneliness and Isolation: The U.S. Surgeon General’s Advisory on the Healing Effects of Social Connection and Community’ (2023). Retrieved from: https://www.hhs.gov/sites/default/files/surgeon-general-social-connection-advisory.pdf
