Chronic Illness / Disability
Note: This page pertains primarily to physical and sensory disabilities (such as paralysis and visual impairment). If you are interested in learning more about developmental disorders, you can visit our Autism / Asperger's page.
Living with a chronic illness or disability can be challenging, but the effects may at times be more challenging than the difficulty itself. Other members of society, including family and friends, may view a disability as a defect or disadvantage, and many people may look at those who have a chronic illness or disability with pity.
Many individuals coping with illness and disability are able to develop or adapt their lifestyle and routines to accommodate it, but some individuals face the reality of permanent changes. When emotional, mental, or interpersonal concerns arise as the result of chronic illness or disability, a therapist or other mental health professional may be able to offer help and support.
A disability is defined as an impairment of the mind or body that restricts or limits a person’s ability to engage in certain activities and interact with society or the world. A person who has a disability may also experience certain participation restrictions to typical daily activities. Between 37 and 57 million Americans (about 1 in 5 people) live with a disability.
Many different types of disabilities exist, and a person may have a disability that is not noticeable by others. Disability may be progressive, result from an injury or illness, or be associated with a long-term condition and may affect:
- Vision, movement, or hearing
- The ability to think, learn, remember, or communicate
- Mental health
Chronic illness—a condition that lasts longer than three months and can typically be managed but not cured—is believed to affect nearly half of all adult Americans, as well as approximately 8% of children under age 17. There are many types of chronic illness, and some, such as asthma and diabetes, may be managed fairly easily. Other conditions, such as heart disease, cancer, and stroke, may be more difficult to manage and may cause an increased risk of death. Disability may sometimes result from illness. Degenerative conditions in particular may lead to diminished function.
A person coping with a chronic illness may find the illness can impact life in a number of ways. One may become tired easily or be often in pain, experience changes in appearance or physical abilities, or find that prescribed medications have undesirable side effects. A person who is unable to work after the onset of a chronic illness may worry about financial difficulties and experience stress or anxiety as a result.
Feelings of anger or depression may also affect those experiencing a disability or chronic illness, as some people may find it difficult to understand why they have been affected, especially when the disability or illness has no clear cause. Children, especially young children, may be particularly overwhelmed by an illness, as they may find it hard to understand what is happening to them and they are likely be frustrated by a strict schedule of medication and doctor or hospital visits .
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Having a disability does not mean a person cannot lead an active and healthy life. A person may be affected by physical restrictions or barriers to function and may require accommodations to participate in certain activities, but it should generally not be assumed that a person with a disability is unable to pursue the same activities as any person without a disability. In the U.S., legislation such as the Americans with Disabilities Act exists to protect the rights of individuals who are affected by disabilities, legally preventing discrimination in housing, employment, education, and public facilities.
Recent statistics show 20-30% of teenagers have a chronic illness, and 10-13% report limitations on daily life as a result of their condition. Children and adolescents who have visible disabilities may experience ostracism or bullying from classmates and peers. They may feel insecure in the company of others their age who are not affected by illness or disability, fearing they may not be accepted due to their condition or as a result of any limitations imposed on them as a result of their illness or disability.
Because certain chronic conditions may have visible effects, some youth may experience body image concerns, which can negatively impact self-esteem. Children who are diagnosed with lifelong illnesses—such as severe allergies, asthma, or epilepsy—may find it difficult to adjust when they realize the condition will never go away. Others may be able to adapt fairly easily but may still be challenged by any restrictions imposed on them.
Although the Affordable Care Act now allows young adults to remain on their parents’ insurance plans until age 26, gaps in coverage, lack of access to care, and difficulty transitioning from pediatric to adult care may lead to complications for many young people. Some of those who are coping with a restrictive illness or disability may find themselves with no other option than to enter an institution because they can no longer receive the same level of personal service they received in pediatric care. Approximately 74% of those who qualified for Medicaid as children do not meet the disability criteria for Social Security income and thus, do not qualify for Medicaid as adults.
Young people who are affected by disabilities may find it difficult when they are unable to participate in the same events and activities as others their age, and they may feel frustration and resentment as a result. Some may find it difficult to imagine dating or experience anxiety at the thought of social occasions. Conditions such as anxiety, stress, or depression may develop, especially when young adults feel isolated and misunderstood or experience teasing and bullying.
Teens and children coping with illness or disability may need certain accommodations at school or in daily life. However, when a condition is not readily apparent, others may challenge the necessity of these accommodations and/or force an explanation, which may lead to distress and humiliation. Therapy can help young adults address areas of concern, develop methods to address potential challenges, and develop and strengthen self-esteem, if necessary.
Adults affected by lifelong illness or disability may face a variety of challenges, but those who have had a disability or chronic illness since childhood have often adapted to any limitations of their condition by the time they reach adulthood. However, when injury occurs suddenly or a chronic illness is diagnosed, a person’s life may be completely changed. The onset of a chronic condition may necessitate certain lifestyle changes or restrictions. The acquisition of a disability through war, accident, crime, or illness is not only likely to be traumatic, it may also affect the way an individual views life, future plans, and relationships with others. Illness or disability may lead some individuals to doubt their ability to pursue relationships, engage in acts of intimacy, or have children. This can often have an impact on mental health and well-being.
Family members who become overly solicitous of a person’s health, act as if nothing is wrong, insist that the disability or illness can be easily overcome, or urge the individual to accept what has happened and move on may mean well but may ultimately cause harm. It may take time for an individual who has sustained an injury or been affected by disability to come to terms with illness, loss of mobility, or other chronic conditions or disabilities, and it may be necessary for individuals to grieve as well as re-evaluate and address certain areas of their lives. Therapy may be helpful during this process, especially as in some cases, individuals coping with illness or disability may become stressed and overwhelmed or develop anxiety or depression.
Following diagnosis of a chronic illness or development of a disability, an individual may experience confusion, frustration, or fear. Necessary lifestyle changes may make one feel stressed, resentful, or overwhelmed. The support of a therapist or other mental health professional is often beneficial as an individual begins to adapt and cope with any effects of illness or disability. The support of a therapist or other mental health professional is often beneficial as an individual begins to adapt and cope with any effects of illness or disability.
Mental health professionals can help normalize the emotions a person is experiencing, help an individual explore ways to address and resolve any troubling feelings, and offer support as an individual determines how to resume life after physical or health changes have occurred. A person recently affected by illness or disability may find it challenging to maintain a view of one’s self that is separate from one’s disability. A therapist can help a person clarify and address this and similar concerns.
A therapist may include an individual’s partner, family members, or close friends in a session, as discussion of how a person’s loved ones can best support and help that person may be an important step in the recovery and adaptation process. When family members or loved ones are affected by a person’s illness or disability, any issues that arise may often be discussed and resolved in therapy. An individual with a chronic illness or disability may also find support groups or group therapy to be helpful.
Caring for an individual who has an illness or disability may be overwhelming or stressful for caregivers, especially when a disability or illness is sudden or unexpected. When this is the case, therapy may also be helpful, and caregivers can address areas of stress or concern and develop their strengths as advocates and caregivers.
- Emotional distress linked to lifelong visual impairment: Jena, 25, enters therapy, reporting symptoms of anxiety and depression. She tells the therapist she has been experiencing these symptoms for nearly a year, but she is not certain of the cause. In the therapy session, Jena brings up several worries and concerns that have been affecting various areas of life, but her discussion with the therapist reveals she has been able to address them in healthy ways. Jena tells the therapist she has been visually impaired since infancy but does not linger on this disclosure. At the end of the session, the therapist asks Jena if she has considered whether her symptoms might have anything to do with her disability. Jena seems startled by this question. In the next session, she tells the therapist that although she has always considered her impairment to be a separate issue having no bearing on the rest of her life, she believes there may be something to the therapist's belief. In the therapy sessions that follow, they address Jena's need to prove herself as an intelligent and capable person and her reluctance to reveal her disability, out of the belief that the disclosure will put limits on her academic goals and her position in the field of scientific research. Together they explore the possibility that Jena's efforts to compensate for her impairment may have contributed to her anxiety. With the therapist's support, Jena begins to work through her depression, realizing she has somewhat isolated herself from friends and potential romantic partners. She resolves to take up social and recreational pursuits instead of simply dedicating herself to work and academia, and as she begins to achieve a greater balance between work and enjoyable pursuits, she is able to feel more relaxed and in touch with her sense of self, which helps her symptoms to diminish.
- About Chronic Diseases. (2014, July 29). Retrieved from http://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf
- Coping with Chronic Illness. (2014, May 20). Retrieved from https://www.nlm.nih.gov/medlineplus/copingwithchronicillness.html
Family Caregivers. (2014, April 2). Retrieved from http://www.cdc.gov/ncbddd/disabilityandhealth/family.html
Healthy Living. (2014, May 27). Retrieved from http://www.cdc.gov/ncbddd/disabilityandhealth/healthyliving.html
Living with a chronic illness: Dealing with feelings. (2014, October 27). Retrieved from https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000601.htm
- Marbury, D. (2013, October 14). Are young adults with chronic illnesses slipping through the healthcare system? Retrieved from http://medicaleconomics.modernmedicine.com/medical-economics/content/tags/aca/are-young-adults-chronic-illnesses-slipping-through-healthcare-sy
- Yeo, M., & Sawyer, S. (2005, March 24). Chronic illness and disability. Retrieved from http://www.bmj.com/content/330/7493/721
Last updated: 01-06-2016
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