Lymph Link Review

Review by Lori R. Volin OTR/L, CLT- LANA
Reprinted with permission from Lymph Link, the NLN newsletter, April 2006.

Those of us working in the field of lymphedema have known for years that lymphedema affects the “whole person” not just physically, but emotionally. We have all witnessed the tears, the anger, and the frustration.  Some of us have felt helpless, having nothing concrete to offer or provide when validation and comfort is needed. Finally, there is a wonderful book that is dedicated specifically to address this delicate issue. This book is a hands-on guide that is intended not just for patients who have lymphedema, but also for family and friends, parents who have children with lymphedema, medical professionals, and psychotherapists. This book is an excellent resource that will give us all tools we can use to bridge the gap between the physical and emotional- and truly treat the “whole person.”

Dr. Elizabeth McMahon wrote this book out of her personal and professional interest in lymphedema. She was initially asked to contribute about this topic in a chapter of a previously published book, Living Well with Lymphedema.  At that time, however, she quickly realized that this particular issue was far too broad to cover in one chapter.   Dr. McMahon is a clinical psychologist who has personal and professional experience working with individuals with chronic medical conditions.  This book identifies many of the thoughts and feelings that may affect a patient or family member having to deal with lymphedema. Dr. McMahon takes the reader by hand to identify and find ways to make positive changes in ones life.

The layout of the book, much like a cookbook, is divided into sections that allow a person to jump ahead to a section that may fit or mirror current feelings or issues that they may struggling with at the time.  The text is well written and easy to read.  The first section includes Chapter I, “Lymphedema Isn’t Just Physical,” which discusses and ties together the links about how one’s emotions have a direct effect on their physical health.  For example, body sensations related to lymphedema (swelling, heaviness, pain/discomfort) can trigger emotions (sadness, anger, frustration, helplessness) which then will trigger thoughts (“I will never look like myself again”), which lead into action (“I need to call my therapist” or “I am not going to wear this sleeve anymore”).  This chapter starts to identify how it all fits together.

Section II, “The Emotional Challenges of Lymphedema,” contains Chapters 2-13.  Each of these chapters identify 12 common emotional challenges that people having lymphedema face: Overwhelmed, Sadness and Grief, Anger, Fear, Self –protective, Worry and Uncertainty, Focus on Your Body, Self-Consciousness, Handling Others’ Reactions, Asking Why, Lessons from Your Past, Current Life Stresses.   After helping identify the feelings, Dr. McMahon takes it a step further and includes a worksheet at the end of each chapter. These worksheets allow the reader to identify clearly how their individual feelings, coping, and responses are affecting them in their own particular situation.  If further information is needed, there is a comprehensive Resource Guide included at the end of each chapter.

Section III, “Taking Charge Emotionally,” helps the patient to start setting personal goals and to identify steps for change.  Section IV continues to build upon teaching the patient “Tools For Change, and Protective Positive Change.”  It addresses how to gain and learn to maintain change.  This section also helps identify good and effective coping skills.

Section V is broken down for those who are involved with patients who have lymphedema.  This includes, Family and friends, For parents of children with lymphedema, For Healthcare Professionals, and For Mental Health Professionals.  Since every role and relationship has its own set of issues and concerns that need to be addressed, each of these roles is discussed in individualized chapters. The chapter for Healthcare Professionals is great and a must read for all healthcare professionals.  It discusses many issues that medical professionals face on a day-to-day basis, and provides insight to help identify the root cause of these issues and suggest ways to overcome them.

The book ends with the “Appendix - About Lymphedema,” a detailed description of the medical and physiological side of lymphedema.  I found it quite interesting that this particular information was placed in the back of the book.   Perhaps it is because most of the literature on lymphedema deals primarily on the physical effects of lymphedema with little attention on the emotional part.  For me, finding the “medical” section placed at the end of this book spoke volumes. Although the physical information is important, the emotional health is finally getting the attention it deserves; no more back row, it’s taking a front row seat!  This made me recall, from the book’s first page, a statement from a frustrated patient – so familiar: “Nobody talks about lymphedema! And even if they do, they focus on the physical aspects.  Well, I have news for you!  I have feelings, too, as well as a body, and my feelings about lymphedema are a BIG issue. How come no one talks about this aspect of it?”  Although, for many of us, a book on the emotional effects of lymphedema may feel long overdue, rest assured that the wait has paid off.  This book is excellent and well written, and definitely well worth the wait! 

Dr. McMahon clearly understands the patients, their struggles and how lymphedema affects each and every day of their lives.  She most certainly did her homework to get an accurate understanding of not just the patient, but also of the clinician and the expectations that are critical for optimal therapy outcomes. Her ability to understand the emotional as well as the medical side of lymphedema creates a beautiful blend that draws out how these ultimately intermix together.  Just simple validation can be a powerful tool.  The author really shows her ability to identify and validate all the thoughts and feelings that may come from having lymphedema, which in and of itself, would seem to offer some healing to those who have struggled with it emotionally.  This book will definitely help all who work in the field of lymphology and it needs to be part of each person’s library.  It teaches how to be more compassionate and understanding and helps the clinician to think a step further when going through the day.  How might this particular patient’s feelings be helping or hindering his or her therapy process?  What do I need to understand about where the patient is emotionally and how is this affecting the behavior?  What can I do or say to show that I am here to support them? This book is an excellent medium to bring up the topic of feelings with our patients and it offers a step-by-step guide (and a strong hand…) to do so. 

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Publication: Overcoming the Emotional Challenges of Lymphedema
Updated: 2010-11-05