When we think of chronic illnesses, we think of people going in and out of the hospital, taking lots of medications and working with many doctors to manage their condition. We think of the individual and how their disease or condition only effects them. In reality, chronic conditions are not just limited to the ill person, their condition affects their family in ways that are not always clearly seen. With every chronic illness comes a different set of challenges and struggles that every family handles in their own way. While the struggles may be different, many of the feelings families experience are often the same.
What is a Chronic Illness?
According to the CDC, a chronic illness is a diagnoses or condition which is defined as lasting more than one year, requires regular medical attention, or limits the abilities of the patient. Some common chronic illnesses include cancer, diabetes, arthritis, kidney disease and obesity. Diseases like these require regular screenings, doctor appointments and medications in order for the patient to maintain their health. This is in contrast to how people without chronic illnesses typically only need a yearly check up and the occasional trip to a specialist in order to maintain their health.
The Role of the Family
The medical team of a chronically ill person is key to their health. The family, and especially those living within the household, are extremely important for an ill person’s well-being. It is not uncommon for partners, spouses, children, siblings and others who are close to the ill person to offer support and become an integral part to maintaining the health of their loved one. One example is seen in transplant patients. Part of the process to become eligible to receive a transplant is that the people in your household have to agree to support you during recovery as you are unable to on your own. They are made to understand that their habits and way they live must change so the patient has the best chance at a successful long-term and healthy recovery. For obesity and diabetes, diet changes are key for the improvement of both conditions. It is common for family members to change their diets in an effort to eliminate tempting foods from the household. For some with severe chronic illnesses, family members will take on the role of caretakers for their loved ones.
Being chronically ill also presents a financial burden for the patient and their family. Even when a patient has health insurance, the cost of frequent doctors appointments, specialty medications and new treatments quickly adds up. Many of those living with chronic illnesses depend on their families to help shoulder the financial burden of medical treatments because many ill people are on disability or limited in their working abilities. Both of these situations limit how much an ill person can make. As a result, high bills and accumulating medical debt are always a reality or a looming possibility. For some families, financial situations can become so dire that community resources like food banks and charities become necessary for them to survive.
For many family units factors like these lead to feelings of worry, frustration, anger and guilt which can be experienced by both healthy and chronically ill family members. It can be a very physically and emotionally difficult situation for everyone involved.
Compassion Fatigue, Burnout and Guilt
One thing that many family members experience is something called compassion fatigue. Compassion fatigue is when a person experiences mental and emotional strain as a result of being around people suffering from painful or traumatic occurrences. It is classified as a secondary trauma and can present itself as apathy, frustration, exhaustion and depression. People can also feel despair and hopelessness about the situation and their life.
Burnout is similar and shares many of the same symptoms of compassion fatigue, but is not linked to trauma. It has a slower onset and a slower recovery. Living with and supporting a chronically ill family member can be an emotionally difficult experience at times, but it is important to remember that this is neither the fault of the person or their family member. It is merely a symptom of the situation.
Ways to help recover form compassion fatigue include reaching out to talk about the feelings you are having, taking time to focus on yourself and your own health, and exercising or starting a new hobby that you can use to take time to focus on your needs.
Guilt can be felt by both healthy and ill family members and can create an emotional struggle for all members of a family. Healthy family members experience guilt about many things like leaving ill loved ones or making plans, being healthy and even sometimes their inability to do more. For those who are chronically ill they can have guilt about perceived feelings of being a burden or the thought of their illness “holding back” their loved ones. A great article about this topic can be found at Psychology Today.
One Study found that these general categories of life were the most commonly impacted by having a chronically ill family member.
% of family members affected by a chronically ill family member:
These numbers indicate that the majority of people interviewed had daily activities and emotions impacted in some way as a result of having a chronically ill loved one. Click here to read the full article.
It is not uncommon for family members and the ill to go through mourning even if the ill loved one has not passed. Families mourn together the lost health of their loved one, the activities they are no longer able to do together or generally the lifestyle they might have had prior to the illness. Each chronic illness is different and as a result what people mourn will be different, but that sense of loss is a common feeling among families.
One of the best ways to help alleviate the stress from these feelings is by seeking out help from mental health professionals. At StayWell, our Behavioral Health Services can provide tools and guidance on how to cope when these feelings start to regularly occur in life and become too much to handle.
Overall having and supporting a chronically ill loved one can be difficult, but it is the situation that life presented you with. As someone in this situation it can definitely be stressful at times, but when you love someone so much, you will do anything that you can to try to ease their pain and stress. Seeing a loved one in such great pain and distress causes you to wish you could do more for them. For me, growing up with a mother who had kidney disease and chronic back pain, I grew up wanting to enter the medical field so that I could contribute to aiding those like us, by researching treatments and seeking education. That experience as a child and young adult helped me to decide what I wanted to do with my life and what path I wanted to set out on. At the end of the day having someone in your life who is chronically ill can be challenging, but if you ask most of us who are in that situation, we will tell you that we are just grateful to still have our loved one no matter what difficulties their conditions bring.
Onshalyte Lee, Intern
StayWell Health Center