By Mary Beth Callahan, ACSW/LMSW-ACP

"How will my life change because of my illness? How will my illness affect my family? Will I be able to return to work and my daily activities?" Do these thoughts sound familiar? Kidney disease can change your life.  The social worker can help you understand your feelings and adapt to changes in your lifestyle that might be necessary because of dialysis or a transplant. The social worker can be your ally in many ways. Below are some ways in which social workers can assist you in your efforts to make your quality of life the best possible.

EDUCATION

Taking charge of your illness and being involved is important. Learn as much as possible about what's happening to you. If something isn't making sense, perhaps your social worker can:

• Help you to think of questions to ask other healthcare team members
• Explain information in a different way that might help you to understand your situation
• Advocate on your behalf to other healthcare team members 
• Always be involved in decision making, stay active, develop goals and know your rights and responsibilities. Your social worker can provide education to help you stay on top of things as your situation changes.

The concept of empowerment is one important aspect of being involved in your care.  Empowerment is "a state of mind in which you authorize yourself to make educated decisions, leading to a healthier life. Empowered patients demand and receive what they know is right or best for their overall health…With empowerment comes responsibility."1 Being empowered helps you to cope with medical issues that arise. This leads to a higher level of self-management. A natural reaction to being told you have a serious medical problem is to deny there is a problem or to pretend it is not very serious. This robs you of the opportunity to learn about your illness so that you can better deal with it. The purpose of gathering as much information as possible is so that you can consider all your options and make better decisions. "Patient self-management involves taking an active role in care and treatment, while also maintaining control over the signs, symptoms, and daily effects of chronic kidney disease." 2 Your social worker can help you in this process.

If you have not started dialysis or have not yet had a transplant, making a treatment choice can be part of taking control of your illness. The social worker can help you to assess your lifestyle to see what treatment choice might work best for you. Attend educational groups and ask questions to find out the advantages and disadvantages of each treatment type.

GATHER A SUPPORT TEAM

During any long illness, there will be difficult times when the support of others can influence you. Keep communication open with your family so that they can understand and feel a part of decisions too. Dealing with a chronic illness can be scary for spouses and children, but knowledge is power and often provides strength. Your social worker can provide support, education and counseling to you and your family.

• Most people with kidney failure deal with common issues in order to adapt to their illness. These might include:
• Feelings/common reactions to illness
• Changes in roles or responsibilities within the family
• Dependence/independence issues
• Changes in sexual function

You may experience several changes in your life as a result of chronic kidney disease. They might appear as changes to self-image or changes in lifestyle. Some of these include psychological stresses such as:

• A loss of sense of well-being
• Uncertainty about the future
• Coping with tests, surgeries, hospitalizations and dialysis treatments
• Others may experience social stresses involving:
• Dietary and fluid restrictions; multiple medications
• Treatment three times a week for hemodialysis or every day for peritoneal dialysis
• Decreased time/energy for family/socializing
• Changes in roles or responsibilities within the family
• Changes in employment/income/financial security

Common feelings of loss, change, compromise, helplessness and uncertainty might result in depression, anxiety, fear or anger. Sometimes depression can appear as anger, withdrawal, loss of concentration and problems with sleeping and/or eating. But these same symptoms might also be those of uremia. Your social worker and nephrologist can help you distinguish between the two and can assist you in overcoming depression or anxiety.

Your social worker can help you stay active, develop healthy emotional responses to stressors and re-establish a balance in your life. It's important to be able to release stressful emotions before they reach the boiling point. Getting angry occasionally happens to most people during a long illness. It's one of the natural stages of grief. But staying angry can drain you of energy you need to fight your disease. Exercise, work, seeing friends and writing in a journal are ways to help you cope with your illness.

REHABILITATION

Anemia and uremia are a few of the reasons why people with kidney failure might feel more tired than a person without kidney failure. This might lead to a tendency to cut back on physical activity. After time, you might have difficulty climbing a flight of stairs or walking around the block. Your social worker can assist you in beginning a physical activity program or can further encourage you if you've already begun a program.

Research tells us that exercise can:

• Reduce emotional problems that can accompany chronic health problems
• Increase physical stamina
• Reduce the risk of coronary artery disease and hypertensive cardiovascular disease

Exercise has been identified as an important part of optimizing your quality of life. Rehabilitation is defined as restoration. Your social worker can help you set rehabilitation goals and celebrate your successes.

Your social worker can also assist you in learning about work incentives from Social Security and ways to prepare to return to work. Your social worker knows the organizations in your state that can best assist you to live your life to the fullest.

RESOURCES

The cost of treatment and medications can seem overwhelming. Your social worker can provide education to you about entitlement programs and assist you with medication planning. The social worker can also connect you with one of the best resources available - another patient who has experienced similar issues.

Finally, your social worker will learn a great deal from you and hopefully, you will develop a mutual respect for each other's abilities. Your social worker can help you manage the work of dealing with chronic kidney disease. Remember, laugh and draw on your inner strengths. Life is lived one moment at a time.

1. Doug Strickland, ESRD patient, Family Focus, Vol. 7, No. 3.

2. Renal Rehabilitation Report, Life Options, Vol. 8, No. 4, Winter 2000.

Mary Beth Callahan, ACSW/LMSW-ACP has been a nephrology social worker since 1984. She is currently on the Life Options Rehabilitation Advisory Council and the Medical Review Board of Network #14. She is past chair of the Council of Nephrology Social Workers and is currently employed by the Dallas Transplant Institute.

This article originally appeared in the March 2002 issue of aakpRENALIFE, Vol. 17, No. 5.

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