The Center for Managing Chronic Disease defines chronic illness as “a long-lasting condition that can be controlled but not cured.” Examples include asthma, diabetes, allergies, epilepsy, autoimmune diseases, and certain forms of cancer, but certainly more could be added to this list. Chronic illnesses become a long-term part of a person’s life, sometimes lasting an entire lifetime. Management of the illness becomes a daily part of existence. Some chronic illness are evident from a young age, but others manifest gradually or later in life. Some, such as autoimmune diseases, may take years to diagnose and then years more to find an effective treatment. Some chronic illnesses can be held at bay through preventative measures, including lifestyle changes, particularly for those with recognizable risk factors such as a family history of the illness.
Chronic illnesses are painful because of far more than the physical symptoms. Chronic illnesses are further exacerbated by lack of true understanding from others including employers and friends/family, self-identifying with the illness, an inability to work or do things you enjoy, medical bills, financial strain, depression, loneliness, and a life consumed by treatments, regimens, and doctor visits. Some chronic illnesses may require the patient to advocate for further treatment and tests, and almost all will need to take active ownership of their medical treatment in order to live a healthy lifestyle.
A person may find their illness beginning to define them. Meghan O’Rourke describes her experience with a chronic, long un-diagnosed autoimmune condition:
“I just want to get better. I want to go for a day without thinking about my body.”…It was that I no longer had the sense that I was a distinct person….To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living….But I had become trapped in my identity as a “sick person,” someone afraid of living. If my mission in life had been reduced to being well at all costs, then the illness had won. (2013, Aug. 26, “What’s Wrong With Me?”, The New Yorker).
One of the keys to successfully navigating a chronic illness is good self-care and a strong support network. It is not a road to be walked alone. There are multiple layers to effective self-management and control of a chronic illness, including self-management by the person, family involvement, clinical expertise and systems, work and school support, as well as community awareness/action, environmental measures, and policies (Center for Managing Chronic Disease).
The family and friends of the chronically ill will also experience emotional and physical strain. New diets may be necessary; certain activities may need to be avoided; siblings may feel like their chronically ill brother or sister consumes all of their parent’s attention. Self-care and support is also necessary for the members of the chronically ill person’s support network. Close family members (like spouses) are especially in need of support.
Questions for Reflection and Discussion
What brings you to this topic and what more do you hope to learn?
Have you or someone you know struggled with a chronic illness? What has that experience been like? What have been the most difficult aspects of it? What has provided the most support and encouragement?
If you know someone with a chronic illness, how can you be a part of a support network for them and their family?
What are some important elements of effective self-care?
Do you think faith and spirituality have an important role in good self-care? How so–or why not?
Chronic illnesses affect a large percentage of people worldwide. We must be aware of the struggles these individuals face and offer empathy and support to them and their families.
Chronic illnesses bring a wide range of struggles and pains outside of simply the physical symptoms.
Helping individuals with chronic illness practice good self-care and view their illness as something outside of themselves can be extremely important. We should encourage and empower mastery over areas of life they can control.
We must not forget the family, close friends, and other caretakers of those with chronic illness. They are also in need of support physically and emotionally.