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This is a summary of some of the most helpful pages of a book titled Living A Healthy Life With Chronic Conditions: Self-management of Heart Disease, Arthritis, Diabetes, Asthma, Bronchitis, Emphysema, & Others. I have cited the pages so that you can find the information easily when reading the book. The book’s information can be found on the bibliography page. There is much more that is helpful in this book, but I wanted to cover the main highlights. Chronic illness has many consequences. Most illnesses cause loss of physical condition or fatigue. Typically people with chronic illness also experience emotional aspects of frustrations, anger, depressions and helplessness. Working to overcome both the emotional and physical issues is the key to living healthy in spite of chronic illness. Positive management of chronic illness leads to healthy living. Positive management includes: being an active part of your care, choosing the best treatments that are available to you, and being proactive in day-to-day management of your condition (Lorig, et al.1). Chronic illness differs from acute disease in many ways. Typically, its onset is gradual; there are many causes; it lasts indefinitely; diagnosis takes time and is often uncertain; cures are rare; and patients become partners with their healthcare providers. Acute illnesses however, usually have a rapid onset, are shorter in duration, can be accurately diagnosed with diagnostic tests, are generally curable with a common treatment and patients usually follow their healthcare providers orders (Lorig, et al.2). Because of chronic illness a cycle of physical deconditioning can begin.
Due to fatigue, many of those with chronic disease have a loss of being able to accomplish what they were previously able to. They give up recreational activities and chores which leads to deconditioning. The loss of physical activity and being uncertain about the future leads to a sense of becoming helpless. Believing that nothing can be done leads to doing nothing which reinforces the cycle (Lorig, et al.3). Chronic illnesses start at the cellular level but there are many causes. The cause varies due to the illness and some illnesses have an unknown cause or even multiple causes. Most chronic illnesses cause one or more of the following symptoms:
In addition to these symptoms there are others. Sleeping problems are common either due to other symptoms or side effects of treatment. Fear and concern for the future is an issue as is depression. Being cheerful is hard when faced with chronic illness. Loss of self-esteem can occur as well (Lorig, et al.5-6). Managing Chronic Illness Management tasks and skills for various illnesses are similar. These tasks and skills include:
Learning an on-going response to your illness and solving day-today problems as they arise are the most important skills in management of illness (Lorig, et al.6). Understanding of your disease is your first responsibility. Learn its causes (if known) and the treatments. Observe the effects of both the disease and treatments on yourself. Each person reacts differently to both the disease and the treatment. Eventually, you’ll become an expert at determining cause and effect of the disease and treatment. Observation and accurately reporting those observations are essential to good self-management (Lorig, et al.6). Chronic illnesses are not steady. They go up and down in intensity (Lorig, et al.6). Your experience and understanding needs to be clearly communicated to your physician. This communication is often the best indication of the path of your chronic illness (Lorig, et al.10). You become more aware of your body after a diagnosis. Minor symptoms can suddenly cause deep concern. Knowing when to ignore temporary minor symptoms as part of the disease process is uncertain. Unusual, persistent, severe symptoms should be brought to your doctor’s attentions. Any symptoms that occur after beginning a new medicine need to be addressed as well. Being partners with your doctor is critical in this situation because he or she can guide you in how to respond to specific issues (Lorig, et al.10). In the business world, managers lead employees in what needs to be done. They don’t work alone. They are responsible for making decisions and seeing them carried out. They are team leaders (Lorig, et al.11). When you become the manager of your illness, you gather information and hire a professional team to consult with. When the advice of professionals is given, it is up to you to follow through. Day-today management is something all chronic illnesses need. Managing an illness is complex (Lorig, et al.11). Keys to finding success:
There are hundreds of skills and strategies to utilize in relieving problems of chronic illness. Pick and choose, experiment, set your own goals. Gaining the sense of confidence and control from successfully accomplishing your goals is possibly more important than what you do (Lorig, et al.11). Good self-managers have learned the skills needed to negotiate the path of chronic illness. There are three main categories of skills needed:
There are many ways of managing a chronic illness. Some people withdraw. The disease becomes the focus of their life (Lorig, et al.15). [The disease has them instead of them being a person who has a disease.] Others manage to get on with their lives. You need to:
Resources Knowing when and where to find help is a major part of self-management, Seeking help doesn’t mean you are a victim of your illness. Family and friends are one of the first resources one can turn to. Community resources can be easy to find or take some hunting. Sources of community resources can be:
The internet is also valuable. However, always discuss the information you find with your doctor in order to make certain the information is correct. The internet is also useful for finding support (Lorig, et al.32). Managing Fatigue Fatigue is very real and a problem for many. It is not “all in your head” as many people imply. Others without chronic illness do not understand fatigue and its unpredictability. Fatigue has several factors
First determine the cause of fatigue by asking questions such as
Once you answer these questions you can determine how to relieve the fatigue (Lorig, et al.37-38). Pain Pain is the #1 concern for many with a chronic illness. As with fatigue, there are many causes.
Communication Good communication is a necessity with a chronic illness. Communication is a two-way street (Lorig, et al.141). Tips for better communication are:
Asking for help or refusing unneeded help can be troublesome. In asking for help be specific. In refusing unneeded help be tactful (Lorig, et al.146-147). If you are the one who is being asked to help others get as much information about the request (Lorig, et al.147). Rejecting the request and not the person is important. Let the person know if it is a matter of timing, physical capabilities etc.( Lorig, et al.148). Being able to communicate with you doctor is extremely important. You must be comfortable in asking questions, sharing intimate details and expressing fears (Lorig, et al.151). One way to make communication easier is to take “P.A.R.T.” Prepare, Ask, Report, Take Action (Lorig, et al.152). Prepare an agenda listing concerns. Identify main concerns at the beginning of the visit. Give feedback of your treatments, inability to follow advice and even positive feedback. Describe symptoms as accurately as possible (Lorig, et al.152-153). Ask questions about diagnosis, tests, treatments and follow-up. Take notes. Bring a trusted family member or friend to help you remember details if needed (Lorig, et al.154). Repeat key points to double check you understanding (Lorig, et al.154). Take action by getting written instructions, recommended reading for more information or if you can’t or won’t follow certain advice let the doctor know so alternatives could be discussed (Lorig, et al.155). |
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