A community of learning and sharing for those living with chronic sorrow.
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

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Coping Strategies for Parents

Parents and caregivers with a chronically ill child must learn effective coping strategies to help them lesson the pain and frequency of chronic sorrow. Effective coping can help the family manage the shock of the child’s diagnosis, provide strength when making healthcare decisions and advocating for services, and help meet the needs of all family members.

Since parents and caregivers must work with medical professionals, teachers, school nurses, and social service agencies, they need to arm themselves with information about available services as well as the child’s educational rights.

Visit each page from the menu on the right side of this page for information about coping strategies and how to advocate for your child.

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Finding Hope & Joy

In addition to the periodic occurrence of the grief-like emotions that characterize chronic sorrow, parents also experience joy in day-to-day life with their chronically ill child. Case studies have reported parents feeling a sense of peace and calmness when with their ill or disabled child.

Some parents view their experience with chronic sorrow as positive because they believe their circumstance has led to greater personal strength and helped them grow as a person. Many parents believe they have grown in wisdom personally and spiritually. They also use their experiences to develop a greater capacity to live life fully.

Many parents who experience chronic sorrow remain defiant in their hope and optimism for their child. They also continue to advocate for the best care and services for their child.

Parents and caregivers who experience chronic sorrow may also learn to appreciate the simple things in life. They celebrate all of the things their child has accomplished and continues to accomplish on this journey.

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