Psychosocial considerations of lymphedema Understanding loss and hope
By Ryan Hamilton, Roanne Thomas and Yvonne Anisimowicz
Living with a chronic disease often means shouldering psychosocial burdens that are inextricably entwined with daily life. Some cancer treatments can damage the lymphatic system, leaving anywhere from 3-30%1 of cancer survivors with secondar y lymphedema following cancer (SLC), a chronic disease that presents permanent challenges that must be managed long after the cancer treatments are over. Cancer is commonly considered to be a temporar y condition, and most people undergo cancer treatment hoping they will be cured and be able to return to their “normal life” that was interrupted by cancer. Being diagnosed with SLC defeats that hope, and the new reality of life with SLC is often incompatible with expectations of resuming the same life and activities af ter surviving cancer.
“You fight to survive cancer and then you’re left with a handicap and it’s a lifelong thing. It’s not something you ever get over, that’s the hard part.”1
The nature of loss
For many, SLC is a life-long reminder of their cancer experience, and a source of significant inconvenience and distress. Life with a disability is often riddled with paradoxes,
one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Managing SLC comes with restrictions and limitations that are felt in every aspect of daily life, both visible and invisible, which can contribute to a loss of identity that creates emotional distress. Swollen limbs and compression garments are outwardly visible markers of illness. Less visible is the restriction of clothing and jewellery choices, which influences the image a person would like to present.
“It is so hot wearing a compression sleeve and it just draws more attention to my arm than if it was swollen. I don’t like bringing attention to the fact that I had cancer. I just want to put it behind me, so this sleeve isn’t really something I wear unless I feel I really have to.”2
Some individuals choose to conceal swollen limbs and compression garments, which also restricts their choice of clothing and affects their personal image and style, as well as how others perceive them. Successfully concealing those visual signs of SLC creates other issues, including the fact that without them, disability becomes invisible.
“I’ve actually been yelled at by one older gentleman saying that I was taking up the [disabled parking] space of somebody that would really need it.”2
SLC also limits the type and duration of activities a person can engage in. Not only is this loss felt in leisure and work activities, but also the ordinary activities of daily life. All of these things tie into a person’s identity, and the impact of these losses in function can be very visible and induce feelings of disability.3
“I’m a spinner so I use my right foot a lot….and I’m supposed to keep my leg up as much as possible, so yeah, that kind of interferes with everything.”2
This also includes limitations to participating in self-care activities, which stems from a lack of information about SLC even among physicians and other health professionals.
“The doctors…don’t regard lymphedema as anything which requires treatment. It’s a cosmetic thing from their point of view, not something which needs to be treated.”2
Names and affiliations of all authors
Ryan Hamilton, Associate Professor, Psychology, University of New Brunswick
Roanne Thomas, Professor, Health Sciences, University of Ottawa
Yvonne Anisimowicz, Research Assistant, Psychology, University of New Brunswick
The support that is available for SLC varies, and is also influenced by the lack of awareness about the condition. Some programs
Our research team has developed a series of workshops to help foster hope and coping for those living with lymphedema secondary to cancer.
funded by breast cancer organizations focus on SLC in the upper limbs and are limited to women who have survived breast cancer.
Even when SLC is visible, the full impact of SLC is not always understood by friends and family. Managing SLC often requires deliberate planning and balancing of activities, and unplanned events cannot always be accommodated. This loss of spontaneity can colour a person’s perception and approach to life, leaving some individuals unable to fully engage in the present because of a need to always be wary of negatively affecting the future.
“It’s always no matter what you do, be careful you don’t make it worse.”2
Renegotiating hope
Hope is defined as a multi-dimensional life force, a coping resource, and a necessity for coping with illness. In the face of the losses related to living with SLC, hope takes on new meaning. Hope can look very different in someone with a chronic condition than in someone whose condition is not permanent. It also varies widely between different people with SLC. Although there is no cure, many people with SLC
still hope for a return to normality. For some, this means their pre-cancer lifestyle. For others, this means adapting to a new normal that includes living with SLC.
Addressing the psychosocial aspects
“I personally hope that I could get back to my normal living, that lymphedema would be an aspect of my life, but not define me.”1
Rather than hoping for a cure, some people hope to avoid any worsening of their symptoms, and incorporate coping actions that support that goal.
“It’s part of getting dressed in the morning. It’s like somebody who has one leg. They have to put on their prosthesis in the morning. I have to put on my sleeve.”1
Coping with SLC is often time-consuming and can add financial stresses.3 Successfully managing SLC symptoms can be a source of hope, and an increase in symptoms can induce feelings of hopelessness.
“What gives me hope is the fact that it’s under control.”1
Taking an active role gives many people the strength to live hopefully and successfully cope with SLC. For some this means raising awareness or getting involved in fundraising activities; for others, it means being actively involved in self-management. One way to think hopefully is to reframe the restrictions and limitations of SLC to highlight something positive instead of focusing on the negative aspects.
“Sometimes I get to do different jobs [when feeling well]…[however] I have a really sore arm today so I can have a beer with the guys.”1
Because SLC is a relatively unfamiliar chronic condition, not only to the general public but also to health care professionals, cancer survivors often find it challenging to find information and understanding. Opportunities to make SLC and the associated emotions visible could be highly beneficial, especially since there are currently few resources available to assist with the psychosocial adjustments necessary to living well despite various limitations and constraints and the associated losses. Coping with SLC is different than coping with cancer, and the hopes embraced during acute cancer care need to be renegotiated when faced with SLC, transitioning from cure-based hopes to more practical hopes. Understanding the nature of loss relating to living with SLC, and the positive influence that action-oriented hopes can have on coping, could inform development of new and more holistic initiatives in cancer rehabilitation and survivorship programs. With this in mind, our research team has developed a series of workshops to help foster hope and coping for those living with lymphedema secondary to cancer. These workshops have been piloted in Ottawa and will be offered in Saint John and Montreal in the near future. For more information on our Learning to Live with Lymphedema research and workshops, please visit http://www.roannethomas.ca/research/ learning-to-live-with-lymphedema.html. LP
References
1. Hamilton R, Thomas R. Renegotiating hope while living with lymphedema after cancer: A qualitative study. European Journal of Cancer Care. Published online September 14, 2015 (doi: 10.1111/ecc.12385).
2. Thomas R, Hamilton R. Illustrating the (in) visible: Understanding the impact of loss in adults living with secondary lymphedema after cancer. International Journal of Qualitative Studies on Health and Well-being. 2014;9:10.3402/qhw. v9.24354. doi:10.3402/qhw.v9.24354.
3. Fu MR, Ridner SH, Hu SH, Stewart BR, Cornier JN, Armer JM. Psychosocial impact of lymphedema: A systematic review of literature from 2004 to 2011. Psycho-Oncology. 2013; 22: 1466-1484. doi: 10.1002/pon.3201