We all experience illness. It is, in the words of the late Susan Sontag, the dark side of life. For most of us, it may be little more than a mild case of the flu where, after rest and minimal treatment, it disappears and we return to our normal daily activities. What we have experienced is referred to as an acute illness. These illnesses don’t last long, and go away either on their own or in response to treatment. A second type of condition, chronic illness, is ongoing and always present. It can affect your health over a long period of time--possibly over your entire life. In most cases, there are no cures for a chronic illness. Thus, you form different expectations for what you can do. If you have been diagnosed with diabetes or hypertension, for example, you expect not to cure the condition but hope to control it as best as possible. There is one similarity between an acute and chronic illness: while the ebb and flow of the chronic condition is continuous from day to day, there are periods when you may experience an acute flare up of the condition. This is particularly the case if you experience an illness such as asthma or migraine headaches. When these occur, you not only have to continue to perform the daily tasks required to manage the condition, but to perform other steps to halt or alleviate the disease flare-ups.

Managing a chronic illness demands that you perform certain behavioral and cognitive processes. If you do, the illness becomes something that you can control as part of your daily life. It is always there but, in most cases, it fades into the background and is not the focus of your existence. Managing a chronic condition may also mean that you make lifestyle changes, such as losing weight or exercising. These actions may be integral to your overall success in coping with an illness. You will also require a more complex medication regimen with a chronic illness. This could include taking maintenance or controller medication daily to manage an illness in addition to those drugs you take to abort a flare-up of your condition. This might include, for example, the taking of a daily drug to control asthma or migraine and a second medication in case of an exacerbation of the condition. The second drug should control the flare-up, although the chronic condition is still there. The complexity of a drug regimen becomes even more complicated when, as many of us know, we experience what are referred to as co-morbid conditions. An example here might be experiencing high blood pressure and high cholesterol, both of which may require daily medications and lifestyle changes. Treatments become even more complex in the elderly where many also experience conditions ranging from diabetes to glaucoma or from heart disease to osteoporosis.

You are not alone if you have a chronic illness in the United States. More than 90 million people in the U.S., for example, live with such a condition. A sampling of data puts chronic illness into perspective. For example, chronic diseases account for 70% of all deaths in the United States. Equally important, however, are morbidity costs or factors caused by a chronic illness. The health care costs of people with chronic diseases account for more than 75% of the nation’s $1.4 trillion health care bill. Chronic diseases account for one-third of the years of potential life lost before age 65. Specific diseases present their own bill. Direct and indirect costs of diabetes, for example, are nearly $132 billion a year. Arthritis results in estimated medical care costs of more than $22 billion, and estimated total costs (medical care and lost productivity) of almost $82 billion. In 2001, approximately $300 billion was spent on all cardiovascular diseases; over $129 billion in lost productivity was due to cardiovascular disease. (A review of worldwide data regarding the impact of chronic illnesses will be found in another entry.)

If you or a member of your family experiences a chronic illness, this information is not new: you may even have a stack of medical bills on your desk and wonder if and how they will ever be paid. You are not alone: grappling with medical bills has become a daily nightmare for too many citizens of the world. To make the matter even worst, there is no likelihood that the situation will change for you or anyone else with a chronic disease in the foreseeable future. You can’t help but wonder what you can do. Admittedly, you don’t have many options, but there is one that you, and only you, can do: maximize the effort you put forth to help control your chronic illness. You may respond by saying, “But I already do that!” Maybe you do; no one wants to deride your efforts. However, there may be other approaches you can take to optimize the control you have over your condition. That is the purpose of this site: to teach you the processes or skills to perform in order to maximize control over a chronic illness. We describe this group of processes as self-management. The term can be described in the following way:

Self-management refers to the performance of cognitive and behavioral processes required to successfully control an illness, particularly one that is chronic, in an effective and efficient manner. Specific processes include: (a) goal setting; (b) self-monitoring; (c) information evaluation; (d) decision-making; (e) appropriate actions; and (f) self-efficacy. The processes act in a reciprocal manner, although one may be dominant at any one time. In addition, five of the processes--goal setting, self-monitoring, information evaluation, decision-making, and taking action--are skills that you perform. Self-efficacy is different in that it is the confidence you have that you can perform any of the processes over time and in a given situation. It is, in essence, the fuel that permits you to control your illness. Performance of the processes may permit you not only to better manage your condition, but also to prevent an exacerbation of your condition, to manage any flare-ups, and to cope with the consequences of a chronic illness. Self-management recognizes that while you receive medical attention as needed, you alone are responsible for most of the day-to-day tasks required to control a chronic illness. You become a full partner with health care providers in improving your health. As a result, you will likely experience better overall health.

This all sounds well and good. You may, in fact, have already heard many of the same sentiments from others. Health care providers, for example, are usually keen to see you share in managing your illness. They are especially eager that you adhere to any instructions they provide. After all, these instructions are given to help improve your health. However, this advice is usually given in a single direction: from your provider to you. You likely have little input into the matter. This approach fails to acknowledge that any partnership equation is reciprocal; it is dependent upon efforts of both you and your health care provider. To be truly effective, the relationship involves your providing regular feedback to the provider. You need to convey the point that you alone experience the illness and only you know what you do to manage it.

The purpose of this site is twofold: First, it will teach you how to acquire and use self-management skills to control an illness and its consequences. The processes of self-management will be described in more detail in other entries, but the aim will be to help you utilize them to maximize your health. Second, it will offer you a forum to describe your experiences in how you manage and cope with a chronic illness. You must not be a passive bystander, but an active participant in managing illness and, in turn, improving your overall health. The success of the site will depend upon the information you provide. People like you know a lot and it is worth sharing with others. Together, it is likely that much of what you learn and practice will not only improve your overall health, but also make your confidant that you can cope with and control any health issues you may face in the future.