Today I want to discuss the experiences of parents of kids affected by a chronic illness. Recently I did a research study on parent-caregiver stress in parents of children diagnosed with eosinophilic GI diseases that was published in the Journal of Pediatric Psychology. Lo and behold I found that these parents (moms, really) are stressed, and this stress is related to other things like the parent's mental-health and their child's behavior. I'll be presenting these findings at the first annual CURED patient education symposium in Cincinnati in November.
There's an interesting article on PsychCentral discussing how parents often find a lot of support during the initial stages of a diagnosis or illness, but then they find themselves feeling isolated as friends may drift away. In this article, the term "Chronic Sorrow," first coined by Simon Olshansky in 1967 is discussed as:
"...however much a family embraces the child they have, they are nonetheless repeatedly confronted with the 'loss' of the child, and the life, they thought they would get....Watching friends’ children progress normally through the ages and stages makes the struggles and deficiencies of their own children painfully obvious and real. For such parents, the pain from realizing their child is out of step with peers is interspersed with longer periods of feeling okay but stretched to periods of low-grade sorrow. Even while we love our children and celebrate whatever successes they may accomplish, the knowledge of their problems and the worries for their future linger in the background. The process rarely stops."
If you're a parent, do you agree with this? Have you experienced chronic sorrow or something similar in caring for your child?
As a relatively new parent, I think about what it would be like if my daughter had a chronic illness and what the experiences of other parents who find themselves in this situation must be like. The article goes on to say it's important for families to not take it personally when friends distance themselves after a chronic illness appears. I'm not sure I agree with that statement, because it is personal. However, I agree not to slip into the Personalization thinking trap that I blogged about earlier this week. These times in our lives can help weed out people who maybe aren't who we thought they were and not quality friends. But this still comes with loss, and that loss is added on top of the other losses that come with having a child with an illness. It's a challenge to say the least. We'll be dedicating more space here to parent-caregivers and how chronic illness touches many more lives than the "identified patient."
There's an interesting article on PsychCentral discussing how parents often find a lot of support during the initial stages of a diagnosis or illness, but then they find themselves feeling isolated as friends may drift away. In this article, the term "Chronic Sorrow," first coined by Simon Olshansky in 1967 is discussed as:
"...however much a family embraces the child they have, they are nonetheless repeatedly confronted with the 'loss' of the child, and the life, they thought they would get....Watching friends’ children progress normally through the ages and stages makes the struggles and deficiencies of their own children painfully obvious and real. For such parents, the pain from realizing their child is out of step with peers is interspersed with longer periods of feeling okay but stretched to periods of low-grade sorrow. Even while we love our children and celebrate whatever successes they may accomplish, the knowledge of their problems and the worries for their future linger in the background. The process rarely stops."
If you're a parent, do you agree with this? Have you experienced chronic sorrow or something similar in caring for your child?
As a relatively new parent, I think about what it would be like if my daughter had a chronic illness and what the experiences of other parents who find themselves in this situation must be like. The article goes on to say it's important for families to not take it personally when friends distance themselves after a chronic illness appears. I'm not sure I agree with that statement, because it is personal. However, I agree not to slip into the Personalization thinking trap that I blogged about earlier this week. These times in our lives can help weed out people who maybe aren't who we thought they were and not quality friends. But this still comes with loss, and that loss is added on top of the other losses that come with having a child with an illness. It's a challenge to say the least. We'll be dedicating more space here to parent-caregivers and how chronic illness touches many more lives than the "identified patient."