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
Body image issues in patients with chronic lymphedema have been shown to be significantly more prevalent than in patients with temporary physical impairments. the way I look now? Is there anything I can do myself to improve my lymphedema? Will my lymphedema get better or worse in the future? Psychological aspects and psychosocial issues For individuals with lymphedema, two types of support are crucial: emotional support and informational support. For this, it is good to know about the psychosocial problems that can be associated with lymphedema. Body image issues in patients with chronic lymphedema have been shown to be significantly more prevalent than in patients with temporary physical impairments.6,7
In studies using the Scale on Health and Physical Well-being (SGBK), lymphedema patients reported lower levels in Health and Physical Well-being, Consideration of Physical Efficiency, Personal Hygiene and Outward Appearance, Sexuality, Physical Self-acceptance, Physical Acceptance by Others and Aspects of Physical Appearance6,7 in comparison to patients with physical trauma. Body image concerns are frequent as patients are constantly reminded of the disease because of its visibility.6,8,9 Body image concerns were also found in almost half of women with secondary breast cancerrelated lymphedema.9 This may lead to social withdrawal, which increases the risk of a high level of psychological distress such as depressive symptoms, sadness, anger and feeling unheard.10 However, according to a review, the incidence of depression and anxiety is not significantly different in cancer patients with and without secondary lymphedema.11 For treatment, it is important to identify patients with a high level of distress. A study of 310 lymphedema patients in an Austrian rehabilitation clinic found that about 35% had a level of psychosocial distress
Coping with lymphedema in general: What can help? u Seek information from professionals to help you understand your condition,
appropriate treatment, and self-management options. If you want more information, ask your doctor, nurse, or therapist for good sources where evidence-based information can be found. u If you have fear, ask yourself what is the worst thing that could happen (whether or not it could happen). Then turn your worry into a question and approach a professional with this question, who then can support you with information. u Find people who are good supports for you: close persons, health care professionals and/or lymphedema support groups. u Allow yourself to find your daily routine of self-care. Trust yourself in the re-organization of life. u Be kind to yourself, mindfully exploring emotions that might come up. If you have trouble coping with difficult emotions, don’t hesitate to get support from close persons and/or a psychologist. u Patients with high levels of psychological distress achieve better outcomes with psychological support, not only in terms of their mental state, but also in terms of their physical symptoms.6,16 u Find your own positive but realistic metaphors or words describing the effect of the treatment. For example, one of our wound patients said during the manual lymphatic drainage: “The lymph is my great garbage collector that helps me to heal.” u Develop a daily routine that allows you to live as normal and fulfilling a life as possible.
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Picture 1: Patient with face, neck and tongue lymphedema.
that required treatment6 and achieved good long-term treatment success after integrated psychological counseling. Loss of confidence in the body
Individuals with lymphedema may experience that the body doesn’t work like it used to. They may be unsure about what else could go wrong with the body. They may experience the lymphedema as chronic disability despite the fact that they are free of cancer.10 Impact on sexuality Sexuality concerns9,10 were reported for the person with lymphedema (e.g. feeling less sexually attractive), but also for the partner who may be uncomfortable with the appearance of the limb or have concerns of hurting the person during sexual activity.10 Although the quality of life is often reduced.12 it seems to be well compensated in primary and secondary lower lymphedema under optimal treatment.13 Traumatic experiences during treatment of the underlying disease, and its potential impact on lymphedema therapy The results of a study by Chan and colleagues14 show posttraumatic symptoms in about 20% of patients with high distress after cancer diagnosis. Such symptoms may also occur in patients who have experienced traumatic events during their treatment, such as complications from cancer treatment or surgery. These post-traumatic symptoms may involve flashbacks (like internal movies of the traumatic situation), nightmares, or horrific Fa l l 2 0 2 2
memories. In addition, there is severe fear, anxiety, or depression. Avoidance of anything reminiscent of the traumatic situation is also part of post-traumatic symptoms and can make them worse. Touch during MLD does not only touch the body, but the whole person, including all kinds of emotions (both in the patient and the lymphedema therapist). Being aware of this can be a great resource for both the patient and the therapist. However, touch in the lymphedema areas or any similarities to the traumatic situation may be a trigger. (Picture 2). People affected, as well as their therapists,
Picture 2: Touch during MLD.
should know that these kinds of post-traumatic symptoms are a normal stress reaction to an extreme situation. (The person is not abnormal, but the situation experienced is abnormal!) If these symptoms do not fade away within a reasonable period of time, professional support of a psychologist or physician specialized in trauma-therapy e.g. EMDR (Eye Movement Desensitization and Reprocessing) or trauma-focused cognitivebehavioral therapy can bring a relief.15 In the absence of contraindications, these types of symptoms related to a particular event can usually be easily and quickly modified through specific psychotherapy and can support the continuation of effective lymphatic therapy. Lymphedema treatment in a palliative cancer situation Normally, we are happy when there is a cure. However, in some cases there is no cure for the underlying disease as in cancer that has reached a palliative situation. Nevertheless, it is important to continue lymphedema therapy for as long as possible in a way that provides symptom-relief and helps to maximize the remaining time in the best possible physical
The Lymphedema Association of Québec presents, in collaboration with
McGill University Health Centre (MUHC) Lymphedema Program a 135-hour clinical certification course: Complex Lymphatic Therapy (CLT) is a method for treating lymphedema and other edemas that was developed by John and Judith Casley-Smith of Australia, pioneers in the field of lymphology. This course meets the standards set by the Lymphology Association of North America (LANA). The School: LymphEd, LLC, A Casley-Smith US affiliate member of Casley-Smith International (CSI) Language: English and French
Your Instructor: Dr Shelley Smith DiCecco, PT, PHD, CLT-LANA, CI-CS
Picture 3: Adele with ulcer and lymphedema before treatment.
Picture 4: Adele after multimodal inpatient treatment.
Complex Lymphatic Therapy
The Casley-Smith Method
Online portion begins: January 2, 2023 On-site portion: February 25 - March 5, 2023 Location: Varennes, Québec An intensive 135-hour clinical certification course in lymphedema treatment for physiotherapists, physicians, nurses, occupational therapists, kinesiologists, physiotherapy technologists, or occupational therapy technologists.
For the full course outline and objectives, instructor bio, questions and registration information, please contact: Marie-Claude Gagnon: (450) 230-2164 mcgagnon@infolympho.ca
Learn More: www.lymphed.com
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Picture 5: Maria with compression stockings at work.
Picture 6: Maria with compression stockings at the beach.
condition and psychological level. Adele, who was being treated for a lower leg ulcer and secondary lymphedema of the legs, was in the palliative stage of cancer when she began multimodal inpatient wound care and lymphatic therapy (Picture 3 on page 7). By working through difficult emotions such as depression, helplessness and despair, and being supported by an interdisciplinary team, she rediscovered her own inner image
of well-being that she had previously forgotten. Mindfully she reconnected to her body and to her wishes and needs again. At the end of her inpatient treatment, she painted a sunflower (Picture 4 on page 7), saying “That’s me—my life wasn’t always easy, but now I am shining.” Spending the remaining time in the best possible condition is the greatest gift that all supporters, including the lymphedema therapist, can give.
Compressive
Engineered Foam
Anatomic Fit
Anchor System
Good role models can facilitate acceptance of living with lymphedema and increase lymphedema awareness in society. Maria is a professional physiotherapist/ lymphatic therapist who is also living with primary lymphedema of the legs and lower trunk quadrant (Pictures 5, 6). After some years of her journey living with this condition, she now describes her own experience and new attitude: “You decide how you want to be seen with lymphedema because you can be the poor person who has a disease and hides it, or the amazing person who shows how to feel perfect with the imperfections.” She now lives more and more perfect with her imperfections—and empowers her patients to be imperfectly perfect. LP A full set of references can be found at https://canadalymph.ca/pathwaysreferences/
NOTE: All patients in the photographs have provided written permission for inclusion in this article.
EZ-on Tabs
Night garment for lymphoedema management
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medi. I feel better.
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Further information: www.medicanada.ca
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