Becoming Resilient: Managing The Emotional Impact Of Chronic Kidney Disease

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Becoming Resilient: Managing The Emotional Impact Of Chronic Kidney Disease

By Wendy Funk Schrag, LMSW, ACSW

Along with the physical aspects of chronic kidney disease (CKD), comes a myriad of emotions that can impact someone’s life. When diagnosed with CKD, it is quite common to experience shock, anger, depression and hopefully eventual acceptance. But along with these classic reactions to grief and loss, other emotions surface as well. Susan Milstrey Wells, in her book A Delicate Balance: Living Successfully with Chronic Illness, identifies the following emotions: desperation, fear, uncertainty, shock, denial, depression, self-doubt, frustration, fear of the future and loss of control. There are also symptoms and conditions related to CKD that can cause emotional distress, such as restless leg syndrome, sleep apnea, loss of hair, appetite changes and fatigue.

Some people with CKD find out about their kidney disease early and have time to adjust emotionally as their kidney disease progresses. Others do not find out about their kidney disease until their kidneys have failed, and they have to deal with these emotions all at once. Although feelings of anger, shock and denial are normal, they are still disruptive to life.

Lori Hartwell has had kidney disease since she was two-years-old. However, even though she grew up with the illness, she states in her book, Chronically Happy: Joyful Living in Spite of Chronic Illness, “It took me years to manage the feelings that came along with the constant diagnoses, the seemingly endless stream of bad news.”

Both Hartwell & Wells say that it is important to acknowledge whatever feelings exist and learn to anticipate what feelings may be coming next to learn how to be pro-active in managing emotional health. Because CKD does not go away, it is important to learn how to become resilient and deal with change.

What is resilience? According to Steven & Sybil Wolin, in The Resilient Self: How Survivors of Troubled Families Rise Above Adversity, resilience is “the capacity to bounce back, to withstand hardship and repair yourself.”  Resiliency is not just struggling through from one crisis to another, but developing skills to learn how to become a stronger person along the way. Wolin & Wolin state there are seven skills to learn to help build a strong base for resiliency. How many of these seven each person is able to develop depends a lot on the individual’s personality. The seven skills are:

Insight: This is more than knowledge and includes asking searching questions. The questions lead to knowledge and knowledge leads to understanding. To have insight into CKD means not only understanding the medical terms but having a good idea of how the body may react to certain situations. Insight can help someone learn to anticipate what may happen and how to rebound faster from future setbacks.

Independence : It is important for people with CKD to separate and distance themselves from their kidney disease. Life may be more complicated than it used to be prior to CKD, but there are still aspects of living that do not rely on kidney disease to define oneself.

Relationships: Having at least one person in life to relate to on an intimate personal level is important. This can be a spouse or significant other. Or, it can be a support group. It can even be someone the person with CKD has never met, such as an online Internet peer support system. The important thing is to have at least one person  with whom to share feelings.

Initiative: Determination, optimism, staying in control all describe aspects of initiative. Initiative means taking an active part in managing kidney disease instead of just reacting to what happens.

Creativity: Having an outlet for self-expression can be very therapeutic. Creativity outlets can include art or other hobbies, gardening, journaling, exercise, pets, volunteer work, the list can go on and on. Think about creative ways to deal with physical symptoms in addition to medications, such as massage and visualization or imagery.

Humor:Laugh and play often. Even planning small things to look forward to every day help people be more resilient.

Morality: While it is easy to feel a sense of loss of personhood with chronic illness, striving to find a sense of purpose helps people be more resilient. It gives people more motivation to bounce back from adversity if they feel they have a purpose for living. Many people with CKD find that offering themselves to others through peer counseling or volunteer work helps them focus less on their illness and more on making an impact in the world around them.

People with CKD are not alone in learning to be resilient. A whole healthcare team is available to help provide education, support and encouragement. What should people with CKD look for when evaluating their doctors and other healthcare team members? Look for these qualities:

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      Willingness to spend time and listen to concerns.
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      Willingness to answer questions and provide education about CKD.
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      Clear, compassionate communication.
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      Respect and collaboration with decisions about medical treatments.
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      Ongoing support and the belief that, while the disease can not be cured, people with CKD can strive to feel better.

People with CKD should be careful not to settle for a second-rate healthcare team. Kidney disease is life long, and it is important for CKD patients to feel comfortable with the professionals taking care of them. It is acceptable to get second opinions or make appointments with other doctors to find the healthcare team that is the best fit.

CKD is a challenging, and sometimes emotionally overwhelming, disease. It is easy to fall victim to it. However, as Wolin & Wolin state, “The promise of sympathy that comes with victim’s status is enticing bait. But if you take it, you will be hopelessly hooked to your pain.”  By developing skills to become resilient, people with CKD can manage the emotional impact better, deal with future setbacks and bounce back to become stronger individuals.

Ms. Funk Schrag is the Patient Services Manager for the Renal Care Group (RCG). She received her Masters degree in Social Work from the University of Kansas - School of Social Welfare and is co-chair of the RCG Social Work Advisory Board, the immediate past chair of the National Kidney Foundation Council of Nephrology Social Workers and a member of the Life Options Rehabilitation Advisory Council.

References:

   1.

      Hartwell, Lori. Chronically Happy: Joyful Living in Spite of Chronic Illness. Poetic Media Press: San Francisco , CA , 2002.
   2.

      Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. Perseus Books: Cambridge , MA , 2000.
   3.

      Wolin, Steven & Susan. The Resilient Self: How Survivors of Troubled Families Rise Above Adversity. Villard Books: New York , NY , 1994.

This article originally appeared in the September/October 2003 issue of Kidney Beginnings: The Magazine, Vol. 2, No. 3.