Movin' On - Movies, audio, and articles for adults living with cystic fibrosisFeatured Article:
Family Matters
When one person in the family has cystic fibrosis, the entire family has it. Not literally, of course, but that may be how it feels when treatment time and doctor appointments take over the schedule; when fear for the child with cystic fibrosis creates anxiety and depression in parents and siblings; or when the cost of medication eats through the family finances.
Discussing with your clinic social worker or psychologist the impact CF is having on your family life can act as a healthy pressure valve, releasing steam from a situation that, at times, is under great stress. Remember, you do not have to manage cystic fibrosis alone. Professionals, friends and family can all be called on to help. Many are just waiting for you to ask. The gift you give them in return is the chance to learn valuable lessons about the priceless nature of life.
Balancing Act
Parents who have children both with and without cystic fibrosis frequently worry about taking time away from one child to care for another. Fear that the healthy sibling(s) will feel overlooked and suffer long-term consequences is commonly expressed
Research published in the Journal of Pediatric Psychology by Donald Sharpe, PhD, and Lucille Rossiter, MA, found that siblings of children with CF do experience depression and anxiety at a higher rate than the general population. However, the experience of having a sibling with cystic fibrosis can also result in a deeper sense of empathy and compassion – qualities most parents welcome in their children.
As you watch the undulations of your family throughout this journey, keep an eye on everyone's emotional health, including your own. If someone begins to exhibit signs of depression or anxiety, it might be time to get some professional help. If it is, realize that you are in good company. It is not uncommon for families living with chronic illness to experience higher rates of depression.
TLC for two
Finding the time for each other can be challenging for couples raising a child with CF. Caretaker burnout, exhaustion and a busy schedule will squeeze out time for walks, dates and long conversations with your partner. The trick is not to let them.
Experts in family resiliency note that a mother and father's efforts to maintain an optimistic outlook can actually positively impact the health of a child with cystic fibrosis.
Couples typically find it much easier to create optimism in the family when they are operating in tandem and bound by open communication – a state much easier to achieve when they take the time to nurture their relationship.
Love can survive almost any attack – except neglect and indifference. ~anonymous
- *Sources
- Journal of Pediatric Psychology, Vol. 27, No. 8, 2002, pp. 699–710; Siblings of Children With a Chronic Illness: A Meta-Analysis Donald Sharpe, PhD, and Lucille Rossiter,MAUniversity of Regina
- Advocates' Forum 2003; Family Adjustment to Living with Cystic Fibrosis; Gretchen Lanka Allen
- 1997 AAFCS Commemorative Lecture; Families Under Stress: What Makes Them Resilient; Hamilton I. McCubbin, Marilyn A. McCubbin, Anne I. Thompson, Sae-Young Han, and Chad T. Allen
