You might experience tiredness from lack of sleep or care demands, isolation from friends and colleagues
The impact on you
Parents of a baby with CF may be at an increased risk of developing anxiety, depression and alcohol/other substance misuse. There’s also evidence to suggest that many parents may develop symptoms of post-traumatic stress in relation to the diagnosis or the procedures their child may undergo.
All this may make parents physically and emotionally less available as parents, affect relationships and make it difficult to parent effectively.
You might experience tiredness from lack of sleep or care demands, isolation from friends and colleagues, a feeling of being overwhelmed by the situation and frustration at the relentless nature of meeting your child’s needs.
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The impact on your non-CF kids
If you have other children, you will often notice a difference between the attention you give them and the attention you give your child with CF. Some siblings might interpret this as you playing favourites and result in jealousy.
It’s important to involve siblings as much as possible in CF-related tasks, which helps give them an understanding of why your focus is most often on the child with CF. Even your toddler with CF might be aware of the impact his/her illness has on the family and may sometimes imagine the impact of the burden they cause being worse than the reality. Be open about what’s happening so your children know it’s ok for them to express their own frustrations and worries.
Click on Helping Your Siblings Cope for more information about how you can help siblings cope.
Click on Behaviour 0-2 for more information about how to deal with a toddler who has CF.
On top of the emotional impact of the diagnosis, there are often financial considerations that may increase the strain on the family. Research indicates that a lot of mothers change their minds about returning to work. Many decide instead to go back part-time while others delay their return to work or decide to stay at home as fulltime carers.
These decisions change the family structure and dynamics, and you might need to adjust the family schedule around the complex needs of the illness over time.
The impact on your bottom line
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Research indicates that many mothers change
their plans to return to work
Communication issues
Miscommunication is common between people at any time, but the complex nature and ‘doctor-speak’ of cystic fibrosis ramps that up several levels. It can be difficult for one parent to translate complex medical information effectively, and this may add to miscommunication and misunderstanding.
Try to attend medical appointments with your partner at least every six months so you are hearing the same information.
Click on Getting Support if you, your partner or anyone else in your family is experiencing anxiety, depression or any other mental health issue. You’ll find a list of helpful resources.
