Grieving a Chronic Illness

May 11, 2017 / admin / 1 Comment / arpkd/chf, Living with ARPKD/CHF

by Jennifer Hill

My understanding of grief changed the day my son received his diagnosis. Grieving had always been a way to let go; a process that allowed me to cope with, and eventually accept a loss. I would break down any emotional barriers, experience the pain and move forward to a place of peace. Although never easy, I felt comfortable with grief. I trusted that the heartache would pass and that the hole created by the loss would diminish.

Living with a chronic illness is an undeniable loss. It’s the loss of a future free of disease and suffering. A healthy person, whose future is unknown, may continue to be healthy. A person living with chronic illness does not benefit from the same unknown future. The progression of disease, although variable, allows for certain predictions. My son’s diagnosis, congenital hepatic fibrosis, means that his liver will continue to scar as his body grows. He will experience pain, illness, and be subjected to endless invasive tests and procedures. And it is not just the future — my son has experienced more physical suffering in his three-years than I have in my twenty-nine. Although the physical suffering is his alone, loving someone with a chronic illness is a loss that I carry.

Grieving a loss that is ongoing – one that is part of my past, present, and future – is incredibly challenging. How do I let go and accept a pain that will not pass? I feel that I am constantly bracing myself for the next painful intervention, difficult decision, or sign of deterioration. If I break down barriers to grieve what has already happened, will I still have the strength to handle tomorrow’s hardship? The vulnerability of grief feels incompatible with the strength needed to cope with a sick child. Seventeen months after my son’s diagnosis, I am still struggling with the ambivalence of grief in chronic illness. And yet, I recognize that grieving is a necessary step towards acceptance.

I’ve found there are ways to help the grieving process, most of which are simple in concept and difficult in practice. The grieving process benefits from space, awareness, expression, support, and presence. Space may be physical, as in taking time alone, or it could mean taking a mental break from life’s expectations. Being aware of the emotions ignited by our grief is crucial. Anger, guilt, and fear are common and can add turmoil to the grieving process if acted on blindly. Expression offers a way to explore and move through thoughts, feelings, and experiences. Finding support in others helps lighten the burden of grief. Connect with people who understand the trials of chronic illness and accept help from friends and family. Finally, practice being in the moment. Chronic illness creates a series of losses, and those of us affected will be living on a tightrope between past and future. Focusing on the moment absolves us of prior pain and worry about tomorrow.

The topic of grief in chronic illness is difficult to discuss and is frequently avoided. It may sound odd, but each loss is an opportunity to practice the grieving process. The goal should not be to numb ourselves to the pain of illness, but instead to get better at mourning; to find growth in our emotional response to loss. By learning to grieve the losses of chronic illness, it is possible to move forward.