Clinical Perspective
Resilience:
Learning to cope with lymphedema By Marc Hamel
T
he noun resilience stems from the Latin word resiliens which means, “to rebound, recoil”. In day-to-day language, resilience refers to the process of growing personally from a challenging event or circumstance. People with lymphedema are faced with many stressors which can test their coping skills and resiliency.
Lymphedema-related emotional distress: Why are people at risk? Living with lymphedema requires a person to cope with physical limitations and adjust to their condition. One must pay particular attention to the prevention of infection and make changes to one’s day-to-day functions to accommodate the physical nature of the condition. However, these adjustments also come with psychological demands, losses and reactions. It is not uncommon for persons living with lymphedema to have certain responses such as “Why me? What did I do to deserve this? Wasn’t cancer enough? Why did this happen? What will I do if I can’t return to work? If I do return to work, what will people say? I can’t do the things I used to do as before? I am becoming such a burden to others!”
How lymphedema affects resiliency Lymphedema is a chronic, incurable and disabling condition that often presents its own challenges. First, there is little public recognition and awareness of the impact of lymphedema on the lives of those touched by the condition. In some paradoxical way, lymphedema is still a “hidden” disease. Second, there is a dearth of research on the psychosocial consequences of the disease on the lives of both men “Resilience is and women affected. Finally, Living with lymphedema: not what happens there remains a lack of psychosocial issues to you. It’s how you understanding from many Such responses can lead to react to, respond healthcare professionals about a host of different feelings to, and recover lymphedema. When it comes such as anger, shame/guilt, from what to secondary lymphedema, helplessness, fear, anxiety, happens to you.” –Jeffrey Gitomer the focus is often on curing the sadness and even depression. cancer; less so on the late effects While the rate of, for instance, anxof the disease. First, one has had to iety and depressive disorders has not face cancer and its treatments and then one been shown to be more prevalent in persons must come to terms with the physical side with lymphedema than those without (see Fu effects caused by the treatments. Together, et al., 2013), living with this chronic condition this can create isolation in individuals coping can present many psychosocial stressors. with the physical, emotional and social Among these reactions it is not uncommon for impact of living with lymphedema. persons with lymphedema to experience one
Marc Hamel, PhD graduated from Concordia University, Montreal with a PhD in Psychology in 2001. His interest in Health Psychology began in the late 1980s when he began working with persons living with HIV and AIDS. Dr. Hamel is currently Clinical Director of the McGill University Health Center (MUHC) Psychosocial Oncology program, which offers professional counselling to persons living with cancer and their family members.
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or many of the following: loss of confidence in their body image (e.g., difficulty with clothing, dressing, feeling less attractive), decreased physical activity (e.g., mobility difficulties), fears (i.e., getting infections or exercising too much), problem with sleep; sexuality issues and work related issues (see Ridner 2009 for review). Another major impact of lymphedema is its visibility to others and a daily reminder that one is no longer who they used to be. How to build resilience? Despite these challenges, people with lymphedema can and do enjoy productive and happy lives. A wonderful quality in humans is our capacity to adapt; even to the most difficult circumstances. What makes people adapt? The answer is not always so clear. However, everyday people show how resilient they can be. While not exhaustive, the following are perhaps key ingredients to developing more resiliency. Taking care of the basics: Maslow’s hierarchy of needs reminds us of the importance of taking care of our most basic needs. This may seem obvious but proper sleep, nutrition, exercise and developing a regular routine is essential for developing resiliency. Exercising, for instance, may prove to be a particular challenge for people with lymphedema due to the physical limitations the conditions imposes. Accepting our emotions: As North Americans, we are comfortable with using logic when facing difficult situations but fear our emotions. Sadness and fears are often repressed, Spring 2018
avoided or pushed aside. Strength is often measured in the amount of restraint one shows over their emotions. However, psychological studies show that repressing emotions can lead to more social isolation and greater emotional distress. Resiliency requires one to be open to one’s feelings including those of anger, fear and sadness, and to remember that persistent feelings of sadness or anxiety do not go away by themselves. There is no shame in experiencing difficult emotions. With lymphedema comes a host of emotions that need to be recognized and expressed. Seeking social support: Resilience can grow from sharing one’s story with others. There are many psychological studies showing the healing benefits of having a confidant or network of support. Nothing soothes the mind and soul more than sharing one’s emotions with someone who cares. The wonder of support groups proves how beneficial such support can be to someone who feels isolated in their condition. There is real strength in numbers and healing as well.
Practicing mindfulness and living mindfully: There is a great deal of talk about mindfulness and its positive effects on stress, pain, anxiety and illness. There are countless workshops, retreats and books on the practice and benefits of mindfulness. Jon Kabat Zinn (1994) defines mindfulness as “the act of paying attention in a particular way, on purpose, in the present moment, and non judgmentally”. The practice of mindfulness can help build resilience as it offers one the opportunity to interact with oneself, others and the world in a different manner. Specifically, mindfulness teaches us about the importance of living fully, in the present moment and without judgment. It also emphasizes the importance of developing more self-compassion. Practicing mindfulness and living more mindfully can make coping with lymphedema easier. Psychological flexibility: Another growing psychological concept is that of psychological flexibility. Taken from the work of Steven Hays’ Acceptance and Commitment Therapy-ACT,
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psychological flexibility refers to “contacting the present moment fully as a conscious human being, and based on what the situation affords, changing or persisting in behavior in the service of chosen values” (see Hayes et al., 1999). In other words, psychological flexibility is an approach whereby one observes one’s emotions, as opposed to avoiding them, and acts according to one’s chosen values. Lymphedema does not have to define one’s whole identify as a person. The person can still choose to live according to their values in spite of having this condition. Conclusion As with any chronic condition, living with lymphedema can be difficult and demanding. However, people can adapt and learn to bounce back from any challenge. Is there a secret to developing resiliency? That secret lies within each of you. Make living with lymphedema your own story of resiliency. LP A full set of references can be found at www.lymphedemapathways.ca
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