Depression and CF

Recognising the emotional toll CF has on your child

As parents of kids with CF, we can make a life transforming difference by focusing as much on their mental health as we do on their physical health. As a Dad of a 20 year old daughter with CF we learnt this the hard way having failed to recognise the early signs during her teenage years. The incredibly important role of the psychologist within your CF team should not be under estimated. If you think your child’s CF is taking an emotional toll then asking yourself these questions may help break a cycle of ill health, difficulties at school and feelings of isolation and loneliness.

  1. Recognising depression? Take the time to talk at length with the CF team psychologists not just the clinical team. This becomes particularly important if you only get to visit them occasionally, as is often the case for those of us traveling from the Channel Islands. They are best placed to assess clinical depression or other issues. Get a referral early to professionals at home who can be seen more easily and regularly. Talking to other parents with children suffering from chronic conditions may help too. CF Guernsey can put you in touch with other parents or councillors who work in a less formal environment.
  1. What brings your child joy? Without having something to look forward to in life people can get tired of living. It can be surprisingly difficult to figure out what really brings your child joy. They may love animals so making arrangements at the local zoo or GSPCA centre to volunteer periodically may not only give them something to look forward to but spark ideas about possible careers. It may give just enough hope to get through the rough spots.
  1. Can you make more effort as a family to have fun? It is easy to focus entirely on clinical appointments and daily routine without taking the opportunity to make something of the day for the whole family. After medical clinic go to the park, bowling or the cinema or just have lunch or dinner out some where. If your child/teenager is hospitalised, bust them out for a few hours if you can and do something fun. We spent many weeks at Great Ormond Street hospital and there was always something going on so make the effort to find out. I’m sure it wont come as a surprise that studies show investing time, energy and money in life experiences i.e. “having fun,” makes you happier than just buying stuff. Encouraging a positive attitude towards CF and enjoying their lives as a connected family has got to help.
  1. Does your child have a vision for his or her life? Sometimes when kids have a serious and progressive chronic illness like CF, they have a hard time seeing past the illness to a future. You may have hope for their future but it doesn’t mean they do. Recognising that difference and finding ways to encourage them to dream and plan for their own future needs constant work.
  1. Can you connect your child with a good role model? Direct encouragement from a parent can often be dismissed out of hand. As teenagers ourselves I’m sure we all thought our parents didn’t understand what we were going through at some point. However, the same words said by a respected role model who is perceived to understand may make all the difference. My daughter having recognised that fault in herself is now determined to train as a counsellor so she can help teenagers following in her footsteps find purpose and hope.

To find out more go to Cystic Fibrosis Foundation web page below for articles and blogs. Topics include;

  • Coping while caring for someone with CF.
  • Depression and CF.
  • Anxiety and CF.
  • Working with your care team.

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