The statistics of individuals with chronic disease in the United States are staggering. The most current data state that 6 of 10 persons in the United States have a chronic disease, whereas 4 in 10 have two or more chronic diseases (Centers for Disease Control and Prevention, 2022a). Currently the U.S. annual health expenditures amount to $4.1 billion, with 90% of those dollars spent on chronic physical and mental diseases (Centers for Disease Control and Prevention, 2022b). Amazing statistics knowing that many chronic diseases can be prevented. Thus, it is fitting that the tagline of the journal is "advancing the care of persons with chronic illness and disability."
For the past 40 years of my career, my passion has been for caring for those with chronic illness and their families, and also educating undergraduate and graduate students about the illness experience of persons with a chronic disease. My goal was to teach students what it means to have a chronic disease. I remember saying somewhere in an early edition of my chronic illness textbook that caring for those with an acute disease or condition was quite easy compared to caring for persons with chronic disease, and that it took very special healthcare professionals to provide that care. It still does today. However, though challenging, the rewards of caring for individuals with chronic disease and their families are many. As rehab nurses, we understand that.
Although the national statistics about chronicity refer to disease, the most important concept of chronic disease is the lived experience of persons with the disease, the illness part of disease. As healthcare professionals, we use the terms disease and illness interchangeably; however, the terms have very different meanings. Disease refers to the pathophysiology of a condition, an alteration in structure or function, for rehab nurses, a stroke, a traumatic brain injury, or a spinal cord injury. Illness, on the other hand, is the human experience of symptoms and suffering and refers to how the disease is perceived, lived with, and responded to by individuals and their families. It is what the patient and family are experiencing at that point in time and place and their interpretation of the situation (Larsen, 2023, p. 3). Conrad and Baker (2010) refer to illness as the social meaning of disease. I offer this definition of chronic illness:
Chronic illness is the lived experience of the individual and family diagnosed with chronic disease. The individual's and family's values impact their perceptions and beliefs of the condition and thus their illness and wellness behaviors. Their values are influenced by demographic, socioeconomic, technological, cultural and environmental variables. The lived experience is "known" only to the individual and family. (Larsen, 2016, pp. 5-6)
Key components of this definition are the patient's and family's perceptions and beliefs about the condition, knowing that sometimes, the patient and family may have different perceptions. Patients do not develop their own illness beliefs and perceptions in a vacuum, but they are shaped by everyday experiences, past experiences in health care, sociodemographic factors, and their culture (Larsen, 2023, p. 7). Patients' and families' behaviors are based on these perceptions. These perceptions may be irrational or invalid, at least to the healthcare professional; however, they form the basis of the illness and wellness behaviors of the patient and family. Patients may recall an individual in the neighborhood with a similar diagnosis and remember that the person never walked again, went back to work, and so forth. That impression is part of the patient's past experiences.
There is another concept in the patient's lived experience that is pertinent to understanding the patient and family's experience. Fife (1994), in his classic work, conceptualized the meaning of serious illness and described how its meaning affected self. The meaning of serious illness is related to what individuals perceive as has been gained or lost relative to their identity in relationships. Roles are altered. Changes occur. Control of one's life slips away, and it is probably the most important aspect relative to self. One loses the idea that life is predictable. Suddenly, the self is vulnerable, and some patients may feel like their life is of little value. Charmaz (1983, 1991) and Fife (1994) have termed this as a loss of self. The old self is not there anymore, and there is difficulty in creating a new self.
As rehab nurses, we care for the person and family with a chronic disease, injury, or disability. Caring for the individual from their "lived experience" requires a different approach-one that is unique for each patient and family. Responding to the illness experience of the individual and family is what holistic rehabilitation practice is all about.
Conflict of Interest
The author declares no conflict of interest.
Funding
There is no funding associated with this article.
Pamala D. Larsen, PhD, MS, RN
Windsor, CO
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