Being the brother or sister of someone with a chronic illness like cystic fibrosis (CF) can be hard. Research shows there is a higher rate of poor psycho-social outcomes for siblings, compared to the general sibling population.
Common problems are emotional, behavioural, academic, adjustment issues, peer-related difficulties and low self-esteem. As a parent it can be hard enough to deal with your child with CF, but it’s important to keep track of what’s happening with your healthy children.
Some of the common feelings and experiences described by siblings of children with chronic illnesses include:
- Guilt – they might feel they caused the illness by doing something wrong; they might feel guilty for being healthy; or guilty for any negative feelings towards their siblings and/or parents
- Worry – worries often include “will I become ill like my sibling?”; worrying whether their sibling may die or return to hospital; worry about the family’s financial situation; worry about their parents’ emotional wellbeing; or pressure to be the ‘good’, ‘easy’ or ‘able’ child
- Resentment – siblings often resent the extra attention and time devoted to their sibling, feeling it’s unfair, and feel disappointed they don’t get more attention; or they may resent the limitations on the family because of the illness
- Loss and isolation – siblings often feel they’ve “lost” their healthy brother or sister, especially when they watch friends with health siblings; they’ll often feel isolated if they’re the only one who has an ill sibling, or when their sibling goes into hospital
- Embarrassment – children often feel embarrassed about being different and having an chronically ill sibling is definitely something different
- Responsibility – siblings often feel responsible to be more independent because of their parents’ preoccupation with caring for their sibling; or feel responsible for looking after their sibling
How to help
It can be hard juggling all the stresses and responsibilities of having a child with CF along with all the other daily demands of life, including your other children. Helping them though is important.
- Provide a creative, fun and safe environment
- Help them understand CF and how it affects the body
- Express feelings about having a brother or sister with a life-limiting illness, and its implications
- Identify and share strategies for coping with difficult feelings and situations
- Discuss your concerns with your social worker
- Organise for the healthy child/ren to talk to the social worker
CF Australia Siblings Factsheet – A fact sheet with links to resources that can be useful for families