Clinical Perspective
Psychological aspects of living with a chronic disease like lymphedema Foeldi Clinic and European Center for Lymphology.
Theoretical background and practical examples By Gabriele Erbacher
“Why me”? is a frequently asked question by people who have been newly diagnosed with a chronic disease. But the question “Why me?” (which often contains a question like “Did I do something wrong?”) often leads to no answer. Regardless, this question is essential at the beginning of the journey to manage a chronic disease. It is like an engine that drives you through several stages until you find a new way to live a good life—with (or despite) this chronic disease.
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eing shocked or experiencing overwhelming feelings, fears or sadness can occur. These are normal reactions to the initial diagnosis of a chronic diagnosis and an unusually stressful situation. It can’t be emphasized enough: all these reactions are normal (if not long lasting several months). The abnormal, (or at least unusual,) is the situation itself: of being newly diagnosed with a chronic disease that changes one’s life. In the process of coping with a disease, the question “Why me?” usually turns into new questions like: “What do I need?” (instead of focusing only on the needs of others), “What does the disease want to bring into my life?”; “Where are my new limits and how can I live a meaningful and fulfilling life within those limits?”. It’s more complex than just lymphedema In most cases, chronic lymphedema is only one side of the coin. In secondary lymphedema, people additionally suffer
from another disease that caused the lymphedema. This underlying condition is also associated with various problems, such as managing a potentially life-threatening disease like cancer, dealing with obesity, or even morbid obesity, as a cause of obesity-related lymphedema. Although most studies have focused on secondary lymphedema in cancer patients, noncancer related lymphedema is much more common.1,2 The two most common causes of secondary lymphedema are chronic venous insufficiency and obesity.1,2 Therefore, the psychosocial impact is not only related to lymphedema, but also to the underlying disease. For example, a meta-analysis confirms a bidirectional relationship between obesity and depression. Depression increases the risk of becoming obese and obesity increases the risk of developing depression.3 In addition, people with lymphedema are more likely to suffer from psychosocial burdens, such as financial and occupational.
Gabriele Erbacher MSc, is head psychologist at the Foeldi clinic and European Center for Lymphology. She is certified in psycho-oncology (ZIST), a board member of the International Lipoedema Association and member of the core group of the German Lipedema Guidelines.
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In most cases, chronic lymphedema is only one side of the coin. In secondary lymphedema, people additionally suffer from another disease that caused the lymphedema. How will lymphedema affect my life? This is the most frequent question that people with lymphedema must cope with. The answer includes much more than only psychological aspects. It depends not only on the localization of lymphedema and its severity but also on relationships with friends, family and peers, as well as personal resources such as motivation, mental stability, disease coping strategies4, personality traits and mindsets5. The answer to how lymphedema will affect life also depends on these personal resources. For example, a patient with secondary face and neck lymphedema (Picture 1 on page 6) will be confronted with questions like: Will I be able to speak like before? Will I be able to continue working in my profession? Will my partner accept me Ly m p h e d e m a p a t h w a y s . c a 5