Chronic illness unfortunately afflicts a dramatic number of people living today. The American Association for Marriage and Family Therapy states that “Approximately 35.3 million Americans, young and old, are limited in their daily functioning because of a chronic mental health or physical health condition” (AAMFT). Thus, chronic illness directly impacts millions of lives. But what about the lives of those surrounding the chronically ill? How does chronic illness impact the families, friends and caretakers that surround those who are ill? While those living with these conditions are certainly vulnerable to their impact, chronic illness has an outward effect that touches several lives beyond the afflicted.
What Is Chronic Illness?
Before we can analyze the impact of chronic illness on those surrounding the ill, we should define “chronic illness”. According to the Center for Disease Control, Chronic illnesses “are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both”. (CDC 2022) This can range from heart disease and cancer to diabetes and Alzheimer’s disease, and beyond. These conditions are not just personally damaging; the CDC further reports that these conditions are also “leading drivers” of the USA’s $4.1 trillion in annual health care costs. (CDC 2022) Chronic illness is expensive financially and mentally on top of presenting health concerns, and extends out to more than just the ill individual.
How Does Chronic Illness Affect the Family Negatively?
As one would expect, chronic illness has several negative impacts on the family system. A 2022 qualitative study from Chronic Illness found that “family members…are at risk for long-term adverse psychological outcomes…inclusive of anxiety, depression, symptoms of post-traumatic stress, loss of employment, and lifestyle interference” (Howard et al., 2022). It would appear that the mental health of families of the chronically ill is threatened in addition to factors like maintaining employment and generally living one’s life. In fact, the same study found that “symptoms of post-traumatic stress have been found in 16% to 18% of family members of patients”, meaning family members can be almost equally traumatized by the illness as those suffering from it (Howard et al., 2022).
Chronic illness can affect various members of the family in different ways. One study found that “siblings without the disorder, particularly young children, can sometimes develop feelings of isolation or resentment if they receive less of their parents’ attention.” (Resources for supporting families 2022) Siblings and other young children may not receive the attention they are used to receiving due to the household disruption that comes with chronic illness. Additionally, some in the family may take on the role of caretaker. According to the same source, this person “will sometimes feel overwhelmed or exhausted and may experience compassion fatigue.” (Resources for supporting families 2022). A caretaker may find themselves unable to care for not just the chronically ill family member, but all other family members and others in their social circle.
Some Positives for the Chronically Ill Family
Though it is difficult to find positivity within a family struggling with a chronically ill family member, if one looks hard enough, they may find a silver lining. The National Institute of Health found that “Some positive aspects were also identified from the literature, including family relationships growing stronger” (Golics et al., 2013). If a family is able to practice self-care and work together, it’s possible that the experience of having a chronically ill family member may make things closer between them. A qualitative study from December 2019 describes “a new dimension of hope among families of children and adolescents living with chronic illness…“Family Hope” highlights the influence of the relationships between relatives and the chronically ill child in the balance of hope.” (Carolina et al., 2019). A healthy system reaction to a chronically ill relative may produce hope that had previously not been able to be discovered. The AAMFT further underscores this, stating that families may find rewards they had not expected on their journey through illness (AAMFT). While chronic illness in a family is never something to celebrate, there is value that can be found if it is searched for.
How Can Counseling Help?
Those with a chronically ill family member typically require all sorts of support, but what is the role of counseling in these circumstances? Counseling can help in several ways:
Such conditions can cause deep emotional distress for all members of the family, not just the caretaker or the chronically ill individual. Online MSW Programs recognizes the importance of processing emotions, and states that counselors can help by “exploring emotions such as grief, guilt, depression, resentment, helplessness and anxiety that clients and their families may struggle with.” (Resources for supporting families 2022). Counseling approaches that highlight emotions can assist in processing any and all of these feelings.
Counselor’s that are experts in family counseling are especially helpful in these scenarios. The AAMFT mentions that “ the therapist can help the family discuss how they are dealing with the illness, make decisions together, and learn how to utilize their own internal strengths and resources to address interpersonal problems.” (AAMFT) Sometimes in times of distress, we lose sight of how we can work together to get through difficult times. A counselor versed in family therapy can help the system process difficult feelings together and how the family can work as a team to help the chronically ill family member. A further area of concern for families with chronic illness is that family dynamics change, often in uncomfortable ways. A counselor can help here, too. Online MSW Programs assert that “supporting families as they navigate shifting relationship dynamics, particularly between the client and family caregivers.” is essential in this situation (Resources for supporting families 2022). Oftentimes, the chronically ill adult children will have to take care of their parents, which reflects a tectonic shift in family roles. Addressing this without a counselor can be difficult, or in some cases, nearly impossible.
Finally, counselors can help us keep perspective and remind us to take care of ourselves by giving us self-care strategies and reminders to use them. Allison Fine, executive director of the Center for Chronic Illness mentions “Oftentimes, our own self-care kind of falls away when another person that we care about or care for has truly high needs.” (Resources for supporting families 2022). It is easy to get so immersed in caring for a family member that we forget to take care of ourselves. However, while self-care is important for the individual it is also relevant to the wellness of the chronically ill family member. If caregivers don’t attend to their own needs, how will they be well enough to attend to those of the sick family member?
Multiple counselors have things to say about chronic illness and its impact on families.
Counselor Ben Lighter, MA, ALC (under the supervision of Megan Campbell, LPCS #3120) states:
“Chronic illness ripples through a family system in many ways. To get through this situation, families need to navigate a sometimes dramatic shift in family dynamics, which is no easy task. Additionally, if caregivers aren’t caring for themselves, burnout is inevitable, leaving everybody in these circumstances at risk.”
Counselor Lynsey Leopard, EdS, LPC, NCC takes the perspective of the chronically ill individual and emphasizes communication:
“I recommend using the Spoon Theory to assess and evaluate the amount and type of energy you have each day so you can allot that energy as effectively as possible. Communicate this to your family, friends, and coworkers so they can support you and adjust their day as possible. This is especially where I like to use the affirmation ‘I will do the best I can with what I’ve got today, and that is okay.’ Remember, it’s okay to ask for help and rest is required.”
Finding your way as a family when a member falls chronically ill can seem overwhelming. But with the proper support, reliance on each other and self-care, the situation can be significantly more manageable. If you and your family are struggling with coping with chronic illness, there is help out there, including Garrett Counseling, with locations throughout Alabama in Albertville / Boaz, Huntsville, Jacksonville, and Jasper. Please, seek help when you need it!
For more articles like this:
American Association for Marriage and Family Therapy, I. (n.d.). Chronic Illness. Chronic illness. Retrieved February 23, 2023, from https://aamft.org/Consumer_Updates/Chronic_Illness.aspx
Carolina, A., & Biaggi, A. (2019). The experience of hope in families of children and adolescents living with chronic illness: A thematic synthesis of qualitative studies. JAN, 75(12), 3246–3262.
Center for Disease Control. (2022, July 21). About chronic diseases. Centers for Disease Control and Prevention. Retrieved February 23, 2023, from https://www.cdc.gov/chronicdisease/about/index.htm#:~:text=Chronic%20diseases%20are%20defined%20broadly,disability%20in%20the%20United%20States
Golics, C. J., Basra, M. K., Finlay, A. Y., & Salek, S. (2013). The impact of disease on family members: A critical aspect of medical care. Journal of the Royal Society of Medicine, 106(10), 399–407. https://doi.org/10.1177/0141076812472616
Howard, A. F., Crowe, S., Choroszewski, L., Kovatch, J., Kelly, M., & Haljan, G. (2022). When chronic critical illness is a family affair: A multi-perspective qualitative study of family involvement in long-term care. Chronic Illness, 174239532211411. https://doi.org/10.1177/17423953221141134
Resources for supporting families coping with chronic illness. CORP-MSW1 (OMSWP). (2022, February 9). Retrieved February 23, 2023, from https://www.onlinemswprograms.com/resources/resources-family-support-chronic-illness/