Living with a chronic illness presents a host of everyday challenges and can impact not just the health of the afflicted but also social and family life, career, and academic progress. These visible challenges are important to recognize, but of equal or greater consequence are those challenges that we cannot readily see, the ones that those with chronic illness may not express or may opt to hide. Addressing these seemingly invisible challenges is an essential aspect of empathetic healthcare and counseling services. In recent decades, the prevalence of chronic disease has increased exponentially; effective treatment courses have undoubtedly prolonged life in a number of cases. Research has shown that there are more individuals living with chronic illnesses now than at any point in history. Though a fixed number is difficult to ascertain, some contemporary research has indicated that at least one in three Americans will suffer from a chronic disease in their lives. Because of the high degree of impact on everyday life, a well-rounded perspective of what it looks like to live with a chronic illness is important to develop. A close examination will show not only the challenges to physical health but also the strains on emotional and social levels as well.
A number of recent comprehensive studies support this dataset and emphasize the scope of the findings. Living with a chronic illness presents problems in the physical realm, including arthritis, chronic pain, fibromyalgia, Crohn’s disease, diabetes, lupus, and Sjögren’s syndrome among others. But in addition to these physical strains, living with chronic illness also affects the loved ones and the social world of the individual. In a true sense, living with chronic illness affects nearly every aspect of an individual’s life. In this paper, I will explore several ways in which everyday life is impacted by chronic illness, including those visible as well as those unseen.
Understanding Chronic Illness
Chronic conditions, as the name suggests, are long-term health issues, unlike acute conditions, which come about and resolve without much intervention, such as when someone catches a cold or the flu. Chronic conditions can be a wide array of health issues, resulting from a variety of causes. They can be physical, such as type 1 and 2 diabetes, hypertension, chronic obstructive pulmonary disease, and fibromyalgia. Chronic conditions can be mental health-related, including depression, anxiety, and PTSD. They may be a mixture of both, such as chronic fatigue syndrome, irritable bowel syndrome, and multiple sclerosis. Conditions can also be a result of lifestyle choices, such as high alcohol use or drug addiction, which can create chronic liver or kidney problems.
There are many more examples of what a chronic condition can be, and they can affect anyone at any time, starting in childhood or happening for the first time in older age. Many people end up with a combination of chronic conditions as they get older. Chronic health issues are becoming more and more common and are becoming an increasing issue for public health around the globe. The global pandemic has also seen many more people struggling with ongoing health issues related to COVID-19. In fact, in the U.S. prior to COVID-19, it was estimated that 6 in every 10 people would have a chronic health issue, with 4 in 10 having more than one chronic health condition. These numbers are similar worldwide. However, these are averages, and there are certain groups more likely to be affected by chronic illness, such as those with a lower income and those who are older.
Definition and Types
Chronic illnesses can be defined as health conditions that persist over an extended period. They are recurrent in nature and, as a result, affect daily activities significantly. Diseases of this type vary in both origins and severity and can emerge at any age. There is a broad range of conditions that fit this definition, with diabetes, chronic obstructive pulmonary disease, arthritis, and heart conditions being a few examples. More specific to individual lifestyles, chronic illness can include epilepsy, autoimmune diseases, cystic fibrosis, and carcinomas. Inflammation is a common feature of many chronic illnesses, although this is not true in every single instance.
The definition of ‘chronic’ is a clinical one rather than a personal one. For example, it can include slowly progressing conditions that ultimately reduce life expectancy just as much as so-called ‘dreaded’ diseases like cancer and multiple sclerosis. Before discussing the impact of chronic illness or chronic pain, the nature of chronicity needs to be better understood. Some health conditions and all illnesses require management and/or intervention. Compelling evidence suggests that financial anxiety, stress, insufficient social or emotional support, and broadly the same predictors of recovery from single-event acute conditions can also predict the course of chronic illness in the future. Physiological comorbidity is another factor. A chronic illness can be diagnosed according to the International Classification of Diseases categories, and it can also have at least one, but often more, subcategories.
Prevalence and Statistics
As a plethora of chronic illnesses exist, which cumulatively impact an estimated 60% of the population of the United States. Cardiovascular diseases are the most common, followed by cancer, diabetes, and chronic respiratory diseases. Furthermore, the proportion of the population with at least one chronic condition has increased from 43% in 1995 to 52% in 2017. Similarly, the number of individuals with multiple chronic medical conditions has seen an increase in prevalence, from 21.8% in 2001 to 26.4% in 2017. That being said, disparities among certain populations do exist. For instance, individuals 65 and older are more likely to have one or more chronic conditions, particularly when compared to children, adolescents, and young adults. In addition, certain chronic conditions are more prevalent in select communities. For instance, Native American and Alaska Native individuals are 2.3 times more likely to have Type 2 diabetes when compared to their white counterparts.
Chronic conditions not only affect the health of individuals but society as a whole. In 2014, the medical costs associated with chronic diseases were estimated to account for 86% of the nation’s health expenditures, subsequently impacting many aspects of an individual’s professional and social life. As the prevalence of chronic conditions grows, so too do healthcare costs. Chronic illnesses and their associated conditions impose a significant burden on individuals, communities, countries, and the broader world. As the population continues to age, the prevalence of long-term conditions and the complexity of managing them is likely to increase still further. Health services and policy need to be configured to respond to these trends. Moreover, chronic diseases are defined as those that generally persist over a long period of time and progress slowly. They continue to worsen, and quite commonly, last for a duration of months to years.
Physical Impact of Chronic Illness
Living with any chronic illness can be challenging, affecting not just disease-specific health, but also overall day-to-day functioning. A range of physical symptoms and complications are associated with chronic illness, and these will vary from person to person, depending on the illness itself and other health-related factors. People living with a chronic illness may experience severe fatigue. This can last for months or years and may not improve with rest. Conditions like disturbed sleep patterns, muscle weakness and pain, joint pain, and problems with concentration and memory can increase how much fatigue is experienced. Pain is another common symptom for individuals with chronic illnesses, and it can be experienced in a variety of ways. Pain can be short-lived or persist for days, weeks, months, or more, even after recovery or even if damage from the original injury has healed. Pain can feel like itching, pinching, stabbing, throbbing, prickling, or burning. Continual pain, however, can cause extensive physical changes, such as sleep disturbances, changes in appetite, and decreased quality of life.
Individuals with chronic illnesses may also experience mobility issues. Mobility, the physical ability to move independently from one place to another, is generally perceived in a multi-dimensional framework, including both lower body functions and instrumented assessment of environmental barriers. Individuals may have problems with their lower body function, which can affect their ability to stand and walk or which require the use of assistive devices to help them maintain mobility. Most chronic illnesses lead to some degree of physical impairment. The burden of disease manifests itself not only through the presence of disease-specific signs and symptoms but also with increased physical tiredness and drain. This can compromise an affected individual’s ability to perform routine, everyday activities. Physical change can also affect an individual emotionally, as many individuals develop anxiety and depression in response to these symptoms. This highlights the need for treatment that targets not only the physical symptoms but also the emotional experiences of those with chronic illness. Treatment might include medication, psychotherapy, and physiotherapy. A comprehensive health care plan might include a coordinated care package driven by a multidisciplinary team.
Unfortunately, living with a chronic illness can be immensely detrimental to the overall life of an individual; however, mainly in his or her ability to perform daily activities. In fact, the severity of chronic diseases is often measured by the ability of an individual to carry out their routine activities. Inability to carry out these things can be an indicator of functional decline and disability. This can be detrimental for self-care and day-to-day activities, where there might be physical limits on what can be done. For example, standing for a longer period of time, walking longer distances, or dressing oneself might all be challenging for those with chronic illness. As a corollary, chronic diseases place a significant economic burden on the health care system. Individuals who have a difficult time performing daily tasks may rely on help from family members or modified transportation services, increasing their costs of living. Individuals may also need to take more frequent sick days from work, apply for disability benefits, or change employment if their disease impacts their job performance.
Symptoms and Complications
Chronic illnesses are characterized by a wide array of symptoms, from the emotional and cognitive to the physical. Pain is a common symptom, but many experience a range of pain depending on their condition, many citing stabbing, throbbing, sharp, or dull pain. These pains can occur almost anywhere in the body, though some individuals have it more localized to specific areas. Pain, muscle spasms, weakness, and decreased flexibility were all highlighted by individuals as potential symptoms resulting from chronic illness. Some express how this fatigue prevents them from being physically active, hence further compounding their condition as decreased activity increases stiffness and a potential increase in joint pain and muscle soreness. Many also stated that in bad periods of the illness, fatigue made it difficult for them to read or engage in hobbies and assignments due to a lack of concentration and cognitive impairments, hence suggesting that the symptom of fatigue could take both a mental and physical toll. Some individuals can experience problems getting to sleep or staying asleep, reduced sleep quality, or difficulty waking in the morning. Another common symptom is dizziness, light-headedness, and blacking out. These symptoms can present in the same person on different days, revealing the complex variation among conditions. Symptoms of some conditions can be further complicated by the cyclical nature of their flares, fluctuating the severity of the symptoms over time. Flare-ups can affect mood and lead to feelings of disappointment, fear, and anger, as the consequences of illness can lead to a feeling that they are not getting better and have no control over what is happening.
Management and Treatment
Treatment and Management A very important part of the treatment of chronic illnesses tends to be related to symptom management, and this links to personalized care plans as there will be different triggers and symptoms in each long-term condition. A number of healthcare professionals are likely to be involved in helping people manage their symptoms. Most commonly, to begin with, are doctors and nurses, but sometimes psychologists or occupational therapists might also help. Some medications can help people feel better, and these can range from tablets to inhalers and even pumps. Physical treatments that are used to manage long-term conditions include:
• Oxygen
• Splints and spacers
• Respiratory physiotherapy.
Psychological treatments that are used to manage long-term conditions include: therapy, counseling, and psychometric testing for people with COPD. Breathlessness is associated with many diseases and conditions other than COPD.
There are some medicines specifically designed to help people who are breathless. Not everyone is treated with medicines. Sometimes lifestyle changes can help people feel better. These lifestyle changes are different for each person. Ongoing monitoring and early intervention in the management of long-term conditions is an integral part of their overall care, and it reduces the likelihood that the disease would develop complications, necessitating emergency hospital admissions, affecting the quality of life of the sufferer and their families, as well as increasing economic costs. The assessment and adjustments take place each time patients with a long-term illness see the healthcare team. Many people with long-term conditions have to monitor their own symptoms at home, for example, measure their blood pressure, pulse, or blood sugar. Some people might be asked to keep a daily diary to record how they’ve been feeling over the last 24 hours. Early symptoms indicating deterioration can then be acted upon in time to reduce the impact of getting worse. This approach can be extended to include routine checkups and investigations such as chest X-rays and ECGs. These act to spot complications early in the disease progress and therefore sustain better quality control.
Psychological and Emotional Impact
When we discuss the social aspects of chronic illness, we tend to put most of our focus on the physical and financial aspects. However, the psychological and emotional aspects are often overlooked. Living with a chronic health condition can lead to a significant increase in stress; figuring out how to work with any limitations while doing as much as possible to stay healthy can become a near obsession. When it is hard to maintain stability, moderate symptoms, or improve functioning, people often become incredibly frustrated. People with chronic illness may live in fear of the next time they will feel really sick again. They may also experience challenges to their identity as the person they used to be seems increasingly far away. For all of these most difficult psychological and emotional reactions, pain, confusion, and hurt can become constant internal stressors that make mental health and overall well-being even harder to maintain. They need effective and healthy ways to manage stress or difficult emotions and keep persevering. They may also have to deal with the extra complications of physical limitations, limiting what coping strategies they can potentially use. Researchers have demonstrated that there is an interaction between mental and physical health. The harder a person takes his or her emotional strife, the more that illness can exacerbate symptoms or lower functioning. Social support groups can help those struggling with both mental and physical health by offering such discussions. They can help people learn how to healthfully support and validate the psychological aspects of people living with chronic illness. While it should not be understated that some may suffer emotionally far more than others, living well with a chronic health condition at least requires being able to handle the emotional fallout of any level of strife.
Stress and Coping Mechanisms
Chronic illness is stressful. The anxious and fearful thoughts can begin before a diagnosis and continue to persist afterward. Patients may worry about the unknown aspects of chronic illness and its predicted effects, be concerned with how the illness is impacting their families, or become sensitive to daily routines. Additionally, trying to manage the illness effectively can become stressful in and of itself – whether through blood sugar management, adopting a new diet, or establishing a sustainable pill schedule. Ultimately, the interplay of these variables can influence our everyday experiences. Many people live for decades with diagnoses, but everyone experiences illness differently.
Coping is important to stress management. Coping includes the behavioral and psychological tactics implemented to address stressors and self-regulate their adjustment effects. Strategies can be adaptive or maladaptive, but often coping is both. Sometimes these strategies can be both adaptive and maladaptive simultaneously: avoiding alcohol because it can raise blood pressure, but choosing to avoid blood pressure medication at the same time, for instance. Thinking through routines and coping strategies can lead to feeling more in control. For recent diagnoses, this control can make the disease feel more “manageable,” with stronger feelings of preparedness. Mindfulness and psychotherapy can be beneficial, as can joining a support group. In these settings, community members share individual ways that they have found working to manage stress. Meditation, art, walking, small vacations, cooking, pen pals, napping, baking bread, sewing, knitting, pets, hobbies, gardening, prayer, drawing, scrapbooking, listening to music, and “stopping the worry cycle” are all examples of coping mechanisms discussed. In terms of illness adjustment, the model is often recommended. This model stands for “Barrier,” “Impact,” and “Coping.”
Depression and Anxiety
Depression and anxiety are two of the most prevalent psychological issues reported by people with chronic illness. In the moment, living with the daily restrictions and routine of managing their health, people are often stressed, sad, and tired. Over time, the sense of unfairness and the emotional burden of living with a chronic illness can lead to feeling depressed and helpless, isolated from others, and put people at risk of developing clinical depression. The onset of a chronic illness can also trigger a latent mental health issue, such as a depressive disorder. Feeling like a burden to others or experiencing guilt over being responsible for becoming sick, and in some cases, caregivers not understanding the complexity of their illness can make them feel anxious about burdening others.
An area of modern health care that has generated a lot of interest is the growing evidence of the connection between the body and the brain, and its implications for our emotional well-being. When the mind perceives a threat, the body responds with the “fight, flight, or freeze” reaction. Hormones like adrenaline and cortisol are released into the bloodstream to allow for survival—increasing your heart rate, raising your blood pressure, and dilating your airways. When the threat is resolved, your body can return to its regular state. For people living with a chronic illness, they feel stressed most of the time—constantly in a state of high alert. This can create an imbalance in their nervous system and bring about anxiety. Regarding treatment, it is essential that anxiety and depression are diagnosed and treated, as leaving mental health untreated can negatively impact physical health outcomes. In the context of chronic illness care, it is critical that the mental health as well as the physical health needs of the patient are addressed together. Patients will develop chronic illnesses from a young age, and often caring for the body takes priority over managing mental health due to the weight assigned to the somatic burden of illness over coping with and making sense of it. It is also important to discuss the mental health burden of chronic illness, to enable further understanding and improvement in the care of chronic illness. Therefore, it is important that healthcare providers in chronic illness care are able to offer good mental health care and advice to patients, and provide information and referral services. Many of these individuals are still managing the emotional burden and need help navigating the available resources to manage their mental health in addition to their overall well-being.
Social Impact
Chronic illness can affect the individual’s social life, social networks, and patterns of relations. Social changes that result from having lived with illness – or from having escaped death – can cause stress in the family and adjustments in interpersonal relationships. They may also impair relations within social support networks. Family strain often results from illness because of changes in relationships in the couple or because of the burden of care associated with looking after spouses or the parent-disabled child. Other people may also provide practical support in the patient’s environment, such as attending to domestic chores, child care, and shopping. In progressively debilitating illness or at the terminal stages, people employed to provide financial support may be necessary, too. Despite the burden of care, much of the care is provided by primary caregivers, usually family members.
Chronic illness affects the lives of others in the family. Children of sick parents, or parents of children who are sick, all express emotions related to the role changes that the sick person can perform. Most reports are about impaired parent-child communication and adolescent behavior changes. Adults may have been unable to be ‘normal’ with their families as well. The sick parent needs to find ways to dish out alternative roles to compensate for the reduction in physical support when the children are too young to help physically. For the parents, this is usually a frustrating stage as the children do not undertake these roles. Teens who are semi-self-centered respond: ‘The responsibility was given for four of the six most distinct subjects in the house as chores: cleaning the kitchen, the living room, and their own room, also caring for the younger children. Due to their parents’ sickness, more burden of responsibility has been handed over to them by their parents so that they can do nothing but care for them, forsaking their individual hobbies and other such.’
Relationships and Support Systems
The relationships between people who experience an illness – particularly a chronic one – and those who support them are fundamental to quality of life. It is through relationships that individuals find meaning and define themselves in various roles. At the same time, it is in relationships where the stressful consequences of illness manifest themselves. Chronic illness, by its very definition, mirrors the meanings of life-course risks and challenges. In various relationships, mutual feelings of hope, fear, expectations of forthcoming changes in an illness, definitions of new life meanings, uncertainties, possibilities, and limitations are played out in everyday life. All of this generally leads to changes or tension in personal, social, and familial relationships. For instance, strained couple relationships are often related to emotional strain and consequent physical symptoms, indicating the close, interrelated status of emotions and the body. Such responses to chronic illness can be manifested in misunderstandings, arguments, feelings of growing apart, or actual distance.
Chronic illness is rife with emotional trials that can both challenge and solidify personal and couple relationships. Pain, displaying physical responses, communicating with various caregivers, and the stress of living with an uncertain health outcome tend to coalesce into emotional crises, which surface in personal relationships. Personal relationships, however, can operate as an arena of denial – in other words, the parameters of everyday relationships often act to avoid or deny ongoing health crises in order to keep normal life going. Social support is a core coping resource for people dealing with a variety of health problems. People benefit from reaching out to friends, family, and other community networks for an array of needs, including emotional support. Illness narratives are shared in these relationships as a way of making sense of the situation and tabling what are often abstract complaints to an interested and often empathic listener. Communication is considered to be a cornerstone in illness narrative research. Establishing links between experiences and things or events outside of the self is seen as active coping in that such talk can act as an affirmation of life, thereby enhancing a sense of personal worth and identity. People who live with pain or disability prefer to talk about them at certain times or under particular circumstances when they anticipate a supportive reaction, particularly from those who are trusted. Clearly, being able to talk freely about pain contributes to the maintenance of good rather than poor mental states.
Work and Financial Considerations
Many people with chronic illness have decreased employment opportunities, perform less well at work, and have to change their lifestyle in order to continue working in cases where they had not already had to give up. People with long-term conditions have difficulty finding jobs and claim that having a chronic condition has reduced their chances of employment. The higher the number of chronic conditions, the more likely people are to be unemployed. Many employers who have illness and disability as a workforce issue are keen to recruit and work to retain staff. There are legislative frameworks to protect employees who are ill and to ensure that they can be included or reintegrated into the workforce. The areas of work that present the most causes for concern are the need for time off due to illness, inequities in rates of ill health retirement, and the support available in the workplace.
Time off work Working when you have an illness is not possible all the time. In a longitudinal study, four out of ten people were absent from work during the year of their interview, possibly one in the last two weeks, and on average, 2.3 times for a total of 11.2 days. Two-thirds of people have taken time off from work to recover from an acute illness, such as bronchitis or the flu, according to a survey. More recent data showed that while overall absence from work, whether due to acute or chronic illness, has declined, there remains an increase in what would traditionally have been considered sick leave (the number of days of long-term absence, such as disability, has increased). Recuperative, rehabilitation, or compassionate leave has continued at a slower rate than critical leave (unplanned absence). It is possible to be present at the place of work despite illness if there is sufficient flexibility and appropriate facilities. The absence of a particular employee places a financial burden on the company and may cause others to have an increased workload, particularly healthcare and security personnel, who have legal work hours due to the consequences on patient care and safety.