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Grief is a natural part of life. People experience grief from loss of loved ones, loss of jobs, change in routine, and loss of health. Dealing with chronic illness can be difficult to navigate and understand. It is often not linear and feels like taking one step forward and two steps back.
Psychiatrist Dr. Elisabeth Kübler-Ross developed and popularized the five stages of grief we know of today: denial, anger, bargaining, depression, and acceptance. This framework serves to understand what people feel after they have experienced a life-threatening medical diagnosis. Though these stages were later applied more broadly, that was not the focus of Dr. Kübler-Ross’ study.
In her last book, which was published posthumously, Kübler-Ross states, “They [the stages of grief] were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is not typical loss.” Kübler-Ross’s quote stands in stark contrast to how grief is shown in the media. It is often depicted as a swift overly dramatic process that happens in a clear sequence. It is used to provide comedic relief. It depicts healing as an easy and fast process, even though it is not.
Chronic Illness and Grief
We often associate loss with the death of a loved one, but this framework that explains grief was specifically about devastating medical diagnosis. So much change happens so quickly, it can be difficult to understand and cope.
A 2020 case study by H. Melanie Buell follows the effect of chronic illness on mental health and a patient’s ability to grieve. The study follows 65-year-old Sally, a chronically ill woman coping with illness, financial challenges and loss.
Sally suffers from diabetes, heart disease, and end-stage renal disease. These chronic illnesses isolated her from others as they took away her independence and freedom. Sally had to rely on others to get her to appointments and help around the house.
Eventually, Sally found herself in the “donut hole” of Medicare. Treatment for her chronic illness was no longer covered under her health insurance. Sally felt the financial effect of illness as she sought different healthcare coverage.
Chronic illness caused Sally to slip into a depression as she grieved for her loss. A once independent and self-reliant person, she had to modify her whole life around chronic illness. She was no longer allowed to do the things she wanted to when she wanted to.
Sally is not the only chronically ill patient to face such feelings. Fortunately, her social worker was able to connect her with another patient facing similar illnesses and difficulties. Sally was encouraged to give advice and guidance. While Sally still struggles with depression, providing support to others seemed to improve her mood.
Recovery Can Be Emotionally Complicated
If left untreated, vector-borne diseases, like bartonellosis and borreliosis, can manifest as chronic illness. Once the disease has disseminated, or spread through the body, it becomes difficult to determine the source of the illness. With proper treatment, patients suffering from these diseases can recover, and most do. It might take years, but diagnosis is a first step towards healing.
Find out more about the technology Galaxy Diagnostics uses to detect slow-growing, immune-evasive pathogens in the genera Bartonella and Borrelia, including the pathogen that causes Lyme disease.
While recovering from a chronic illness can be exciting, the process is still riddled with grief. The impact of survivorship is just beginning to be understood, and research mainly focuses on people with cancer or who have experienced intensive care. As Dr. Kübler-Ross found studying people with fatal diagnoses, the impacts of survivorship can be diverse and nonlinear as people and their families negotiate this life change. Those recovering from illness must change their lives once again. Independence and freedom may be on the horizon, but the steps to get there can seem daunting.
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Conclusion
Grief is as individual as chronic illness. Everyone handles and processes it differently. If you or someone you know struggles with either, here are some support tips.
- Speak with someone – talking to a licensed professional, community leader, or friend can help you share the weight of chronic illness
- Take time for yourself – healing may take longer than anticipated, and that’s okay. The only person’s timeline that matters is yours
- Listen, listen, listen – if you suffer from a chronic illness, listen to your body and what it needs. If a loved one suffers from chronic illness, listen to understand them and not merely to respond.
Some people find their way to acceptance of loss faster than others. Some people experience the process at different times, out of order, or backwards. There is no one-size-fits-all model for grief and loss, or for grief and recovery.
References
Buell, H. M. (2020). Loss and grief due to chronic illness: Learning from a client. Journal of Advanced Generalist Social Work Practice, 15(1), 21-26. https://springfield.edu/sites/default/files/inline-files/SC_Graduate_Social_Work_Journal_2020_Article3.pdf
National Institutes of Mental Health. (2021). Chronic illness and mental health: Recognizing and treating depression. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health
Kessler, D., & Kübler-Ross, E. (2005). On grief and grieving: Finding the meaning of grief through the five stages of loss. Scribner.
Elisabeth Kübler-Ross Foundation. (n.d.). EKR biography. https://www.ekrfoundation.org/elisabeth-kubler-ross/biography/