Resilience: learning to cope with lymphedema

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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


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