What is Chronic Sorrow?

Chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. At its core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. It is the emotion-filled chasm between “what is” versus the parents’ view of “what should have been.”

Sometimes called a “living loss” 1 because it doesn’t go away, chronic sorrow may stay in the background while the family does their best to incorporate the child’s care into their usual routine. If a medical crisis or event occurs which magnifies the loss and disparity between reality and the life once dreamed of, it can trigger a return of the profound sadness.

Parents or caregivers of premature babies, children with diabetes, sickle cell disease, spina bifida, epilepsy, muscular sclerosis, and developmental disabilities may have to cope with chronic sorrow. Caregivers of family members with Alzheimer’s disease or other ongoing illnesses, as well as couples experiencing infertility, may also have chronic sorrow.

  1. Chronic Sorrow: A Living Loss, Susan Roos, 2002