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Living with Someone with CF

Having a brother, sister or even a parent with CF can sometimes mean that over time you may experience many different feelings, like worry, embarrassment, guilt, jealousy, frustration or even sadness. It is very normal to have these feelings, and it’s also important to understand why you might feel them.

WHY DO I FEEL…

Worried: You may worry about them sometimes. You might worry about the future and what will happen to them. It might help to tell your parents or someone you trust about your worries. Even though they may be worried too, it is ok to ask them questions. They can tell you what is happening and explain things to you.

Sometimes you might worry about asking new friends over to your house as you might have to explain why they are coughing or doing physio. Here are some things that can help:

  • Tell your friends about your sibling/parent before they visit.
  • Explain that they have an illness and that they have to do special treatments to keep their lungs healthy.
  • Talk to friends about some of the good things as well as the difficult.

Embarrassed: You might feel embarrassed about their appearance. Such as if they have a PICC line, they cough lots or they look skinnier than other people.

Guilty: at being “normal” and healthy. You may feel guilty that your sibling/parent is unwell, and you aren’t. This is quite common and is important to talk to someone you trust about these feelings.

Jealous: It might feel like there is a lot of attention on the person with CF. In some families, the child who is ill gets more presents and more people making a fuss of them. It can seem that people are not as interested in the things that you do. It is normal to feel jealous when this happens. The suggestions below may help:

  • Talk to a parent or friend about it.
  • Ask your parents to tell relatives and friends to be fair with gifts and attention, for all the children in the family.
  • Ask your parents if they can set some time aside each day to spend a bit of special time with you, maybe playing games, making things, chatting, watching TV, having a hug.
  • Ask your parents if they know any other children like you. Maybe your parents can arrange for you to meet other children who have a sibling or parent with an illness (like CFWA’s Sibling and Offspring Camp!).

Frustrated or angry: You might feel angry that normal life is disrupted when your sibling or parent has to go into hospital. You might feel angry that its ‘all about them’. Feeling angry is normal. Ask your friends this and they’ll say they get mad at their family too sometimes. Here are some things that can help you calm down:

  • Count slowly up to 10.
  • Walk away and come back when you are feeling calm.
  • Go in to another room and listen to music or watch TV.
  • Spend some time doing something relaxing – reading, drawing, making things, going for a walk.
  • Tell your parents that you feel angry and need help to get calm.
  • Write a story or draw a picture about how you feel.

Lonely or sad: Sometimes you might feel sad because your sibling or parent is ill, or you might feel like no one else understands what it is like to be in a family of a person with a chronic illness. If you feel sad, some of the suggestions below may help:

  • Have a cry; many people feel a bit better after a cry.
  • Write or draw about your feelings in a notebook.
  • Ask a parent for a chat or hug.
  • Tell your parents or someone else you trust that you feel sad.

Lots of kids miss their sibling and parents when they have to stay in hospital. Some kids get upset about the treatment that their sibling or parent needs to have. Some of the suggestions below may help:

  • Tell them you really miss them when they need to stay in hospital.
  • Make a special card for them.
  • Get someone to take you to the hospital often to visit.
  • Make a calendar to count the days until they’re home.

 

BEING PART OF A FAMILY AFFECTED BY CF ALSO MEANS THAT YOU MAY ALSO EXPERIENCE POSITIVE FEELINGS AND EXPERIENCES SUCH AS:

Pride: for your sibling or parent for how well they are able to cope with their illness.

Being closer with the family: You may feel very close to your family because you all have to work as a team to live with CF on a daily basis.

Being more sympathetic: You probably have a greater understanding of what it is like for other people to suffer or to experience something that is really difficult to live with.

 

WHAT HAVE YOU LEARNT FROM LIVING WITH SOMEONE WHO HAS CF?

  • Being understanding of people who are different?
  • Knowing a lot about medical things?
  • Being a responsible person?
  • Feeling glad to be healthy and able to do things?

Other things? What are they?

 

Article from Rozee Magazine, 2019.


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