Responses to Disability: How People Cope with Chronic Illness and Disability, by Michael Gerald, PhD.
About the Author
Michael Gerald, PhD, is a licensed Clinical Mental Health Counselor and Certified Rehab Counselor. He is currently employed as an Assistant Professor in Rehabilitation Counseling at Utah State University (USU) in Logan, UT. Michael has provided clinical mental health services as a Crisis Counselor, Substance Abuse Counselor, Correctional Mental Health Provider, and Private Practice Mental Health.
Michael has received compensation from Coloplast to provide this information.
Whether someone acquires a Chronic Illness or Disability (CID) later in life or is born with a CID, they will inevitably need to engage in some degree of coping in order to mitigate the varying psychological, physical, and social consequences of their CID. Previously termed adjustment to CID, the manner in which people cope with their CID is currently referred to as response to CID. Response to CID can be broadly understood as a dynamic process of emotional, cognitive, and behavioral changes in response to CID that gradually approach adaptive functioning. Stress due to disabilities can come multiple sources: threats to life and health; threats to body integrity and comfort; threats to independence, autonomy, and privacy; threats to self-concept; threats to life goals; threats to relationships; and threats to economic well-being. The manner in which people respond to their CID depends on their personality and self-identity, social relationships, socioeconomic status, culture, environment, lifestyle, responsibilities, and individual goals.
Although we need to be cautious in evaluating responses to CID, as there is not a right way to cope with one’s CID, we can identify two broad coping strategies: adaptive and maladaptive. Coping represents a constellation of behaviors that are intended to help an individual manage, tolerate, or reduce stress associated with major life events. Adaptive coping is coping behavior that helps individuals reduce stress, while enhancing well-being and functioning. An ostomate may utilize coping strategies such as attending a support group in order to improve their response to CID. Conversely, maladaptive coping may help an individual reduce stress, but it also inhibits growth potential and contributes to declines in health and functioning. An ostomate may turn to drugs or alcohol to cope with their CID, which may worsen their underlying health conditions.
It is vitally important to note that living with a CID is not always, and certainly does not have to be, a negative experience. Although CID can impact a person’s self-esteem, self-identity, social identity, self-worth, or body image, it does not always have to do so negatively. However, persons experiencing a CID may experience distressing emotional experiences such as: grief and loss; fear/anxiety; anger; depression; or guilt and shame. As a result, people respond to CID in differing ways. A person’s response to CID is typically aimed at helping a person maintain the degree of functioning they had prior to the onset of CID, or in the case of congenital disabilities, maximize functioning while living with their CID. Five common ways in which people respond to CID are: Denial; Regression; Compensation; Rationalization; and Diversion of Feelings.
Denial is a commonly understood concept across disciplines, but in the case of CID it involves an individual denying the existence or severity of their CID. Denial often receives a ‘bad rap’ in that it is considered maladaptive, but for many, especially at the onset of CID, it can provide a period of coping in which they are able to continue living their life as they normally would because they have not yet addressed some of the potential negative consequences of CID. Denial, however, can be maladaptive if it leads an individual to forego management recommendations or reject the implications of a condition. Regression refers to an individual subconsciously reverting to an earlier stage of development, which typically would manifest as becoming more dependent, more passive, and less emotionally regulated. Regression may lead an individual to adopt a fixed mindset, believing themselves to be incapable of leading their life as they would like due to their CID. Rationalization involves individuals seeking out socially acceptable reasons for their behavior or to excuse themselves for not reaching goals or accomplishing tasks. Individuals may overly identify with the limitations of their CID and rationalize goals they do not pursue or opportunities they do not take advantage of.
Compensation is a very common response among persons with CID. Compensation refers to an individual learning to counteract functional limitations in one area by becoming stronger and more proficient in another area. A well-known example of this was Stephen Hawking, whose ALS diagnosis progressively led to his losing motor control and function, but it did not impact his cognitive functioning and he was able to devote his available resources to academic endeavors. Compensation is not always targeted in a healthy direction, as an ostomate may perceive their ostomy as unattractive and develop excessive exercise behaviors to improve their body image. Lastly, Diversion of Feelings is an equally common response to CID (particularly in media depictions of CID) in which an individual diverts negative emotional states or ideas into socially acceptable behaviors. An example of this response would be “channeling” one’s anger or fear due to their CID into drive and passion. Diversion of Feelings can become unhelpful, though, if a person never addresses the negative emotional states they seek to divert.
In summary, persons with CID may experience stressors and life changes that require a coping response in order to mitigate the consequences of CID and improve or maintain functioning as part of their overall adjustment or response to CID. Be mindful of the fact that response to disability is highly variable and there is no right way to cope with CID. Instead, as practitioners, we should be evaluating how a CID has affected someone’s life (if at all), what kind of self-talk they are engaging in surrounding their CID, what their goals are for the future, and how they might be responding to their CID cognitively, emotionally, and physically. One of the most critical components of response to CID is what meaning I ascribe to CID: is my CID a blessing? A curse? A non-issue? Another fork in the road? How people make meaning of their CID is correlated with whether they will respond in a manner that is adaptive or maladaptive. Additionally, the onset of a CID has the potential to challenge one’s self-concept, or our sense of self that is comprised of self-esteem, group identity, and self-efficacy (Bogart, 2014). Because our self-concept is heavily influenced by our social connections, social supports, and culture, helping persons with CID and Ostomies connect with other persons with Ostomies or bowel/bladder dysfunction can help them to develop an adaptive self-concept and sense of belongingness, while reducing stigmatized attitudes towards disability (Bogart, 2014). Specific research within the ostomy community has demonstrated that connection of persons with Ostomies to others with positive messaging around living with an ostomy, such as websites like Uncover Ostomy (UO), can positively impact their adjustment by combating internalized stigma (Frohlich & Zmyslinski-Seelig, 2016). ●
Bogart, K. R. (2014). The role of disability self-concept in adaptation to congenital or acquired disability. Rehabilitation Psychology, 59(1), 107-115. doi:10.1037/a0035800
Frohlich, D. O., & Zmyslinski-Seelig, A. N. (2016). How Uncover Ostomy challenges ostomy stigma, and encourages others to do the same. New Media and Society, 18(2), 220-238. doi:10.1177/1461444814541943