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HEALTH & WELLNESS

Mind & Spirit

Kids & Families

Seniors & AGING

Living With Chronic Illness

By Dennis Botts, LCSW, ACSW, Diplomate
 

Introduction
Taking Charge of the Day:  Self- Management
Managing Symptoms
Managing Energy
Managing Emotions
Managing Wellness
Finding the “Renew You”

 

Introduction

As many as 120 million people in this country—or about one third our population—live with one or more chronic illness.  Regardless which of the hundreds of diagnoses for chronic illnesses you may have, there will be changes in everyday living.

Often patients hear ”You have to find ways to live with your illness.” However, there is good news.  A lot of information, including the experiences of other people, is available that we can use to help ourselves. But information is only helpful if it is relevant to problems you are experiencing and helps you solve them. Finding useful information and applying it to your situation often requires the expertise of health professionals, starting with your family physician, the hospital social worker, and clergy.

Taking Charge of the Day:  Self-Management

The term “self-management” refers to you being in control of the activities of your day, one day at a time. Taking care of your illness begins with taking care of your wellness. The healthier you are the more likely you are to prevent and manage problems with your illness. This process begins early, at the time of diagnosis. Think of self-management as a project or a new job for you and your family. You will probably be more successful if you include family, because everyone benefits from taking care of wellness, and those who care for you need to protect their health also.

Four Areas to Consider In Self Management of Chronic Illnesses
Managing Symptoms

Symptoms become a working partner with your family physician as you try to find the right combination of treatment that best helps you. Tell your doctor how often your symptoms occur and how intense they are. Keep journals if necessary to document your progress. Organize medications with pill organizers, and keep a calendar of appointments. Remember that treating chronic illness is a long term process of many adjustments and that no one medication or treatment may be helpful all the time.

Managing Energy

Perhaps the number one concern with all the chronic illnesses is fatigue caused either by illness or medication. Many people, especially athletes, think of energy like money they have in the bank.  You can make deposits, like resting before activities and good energy nutrition. And, there are withdrawals, like too much activity for one day, and energy draining emotions such as anger.  Fatigue can lead to a lot of problems in relationships—especially if it makes you irritable and moody. Plan your day so you do not go bankrupt on energy.

Managing Emotions

The stress of chronic illness can put emotions into overtime. Stress often directly affects symptoms and can cause even more stress. Also, a universal emotional concern in all chronic illness is depression. A sense of lack of control over one’s life and fear of the future contributes greatly to depression.

In addition, depressed feelings frequently accompany chronic pain. Withdrawal, sadness,  and problems with sleeping and eating are early warning signs of depression.  Depression is treatable. You tell your physician and mental health professional as soon as you notice its signs. Your hospital’s medical social workers or your local mental health center can help. Many physicians will tell you early on to expect some problems with depression because it is very common with long term illnesses.

Support groups are great places to find people in similar circumstances with experience in solving the problems of chronic illnesses. There is strength in numbers.

Managing Wellness

It is very important for you and your caregiver to continue good health practices since staying healthy is more important now than ever. Living with chronic illnesses is a taxing experience and you need your best game to manage the challenges.

Eating well, staying active and managing stress are all part of maintaining health and a strong immune system. This is a good time to get help with a plan to stop smoking, return to a healthy weight, and make time for enough rest and relaxation. You and your caregivers need breaks from managing the illnesses, so build in respite and distractions. Doing these things as couples or groups also have the hidden benefit of working together with positive activities.

Finding the “Renew You”

Often illnesses create such change and intrusion that many people refer to it as life changing. Change involves some loss but this makes room for opportunity. In Chinese proverbs, the symbol for change is the same as the symbol for opportunity. Nothing brings out the question of the meaning of life like being diagnosed with dreaded illnesses.

Many people become more creative in their thinking at this time as they start to think about themselves and every day life. The boredom of chronic illness can offer a lot of time for creative pursuits, beyond watching television. Many patients and their families find volunteering in organizations for illnesses meaningful. We all need to feel needed, and organizations are positive places that can use your help in many ways. Support groups enlist experienced patients and caregivers because their problem-solving experience is very helpful to newly diagnosed patients and families.

A renewal of spiritual thinking is common, and often people take a renewed interest in religion. This can be very supportive since the religious community usually addresses the suffering of the ill and many religious organizations such as churches, synagogues, and others are great at offering support in practical matters like transportation to treatment, companionship, and support groups.

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