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					You may find yourself in the position of being relieved to   CF Associations                                                                           You have just found out that your child has
hear a definite diagnosis of Cystic Fibrosis. Relief is                                                                                                Cystic Fibrosis. By now you would know some of the
only to be expected if your search for an answer to your     Cystic Fibrosis Australia Inc.                                                            facts on CF but our concern is with how you may feel.
child’s problems has been a long one.                        51 Wicks Road, North Ryde NSW 2113                                                        It is important to know that many of your feelings have
                                                             PO Box 254, North Ryde NSW 1670
“I knew there was something serious there. He kept           phone (02) 9878 5250 freecall 1800 635 008                                                been shared by other parents and you are not alone.
losing weight and then putting it on, losing weight,         facsimile (02) 9878 5058                                                                  In this brochure we have included some quotes from
gaining it. I was at the doctor’s three times a week         email                                              parents whose children were diagnosed as having CF.
for a year.”                                       

“I think my GP had decided I had new mum jitters.”           Cystic Fibrosis NSW                                                   Question & Answer   How can I handle my feelings?
                                                             51 Wicks Road, North Ryde NSW 2113                                                        It is very likely that you will be grieving. This may
If you do feel relief, do not feel guilt at this reaction.
You are relieved because now you know what you are
                                                             PO Box 149, North Ryde NSW 1670
                                                             phone (02) 9878 2075 facsimile (02) 9878 4890                         Cystic Fibrosis     surprise you as you have not lost your child and the
                                                                                                                                                       doctor will have told you that the outlook for children
fighting – and you know how to fight it.                     email
                                                             Cystic Fibrosis Victoria Inc
                                                             80 Dodds Street, Southbank VIC 3006
                                                                                                                                   Newly Diagnosed     born with CF is now optimistic. But you have lost the
                                                                                                                                                       healthy child you thought you had.
                                                             PO Box 3036, South Melbourne VIC 3205                                                     Letting go of that “ideal” is difficult and can only be
                                                             phone (03) 9686 1811 facsimile (03) 9686 3437                                             done little by little. Grief is a complex group of feelings
                                                                                                                                                       and everyone experiences grief differently. You could
                                                             Cystic Fibrosis WA                                                                        be confused and have a variety of different reactions
                                                             PO Box 959, Nedlands WA 6909                                                              or your feelings could be very clear to you. Your
                                                             phone (08) 9389 8766 facsimile (08) 9389 8768                                             reactions could be strong or they could emerge
                                                                                                                                                       slowly over a long period of time.
                                                             Cystic Fibrosis Tasmania Inc
                                                             PO Box 245, Hobart TAS 7001
                                                             phone (03) 6334 8754 facsimile (03) 6334 8755
                                                             Cystic Fibrosis Queensland Ltd
                                                             31 Kate Street, Kedron QLD 4031
                                                             PO Box 2245, Chermside Centre QLD 4032
                                                             phone (07) 3359 8000 facsimile (07) 3359 3380
                                                             Cystic Fibrosis SA Inc
                                                             143-145 Sturt Street, Adelaide SA 5000
                                                             phone (08) 8221 5595 facsimile (08) 8221 5596
                                                             CF Association of ACT Inc
                                                             PO Box 909, Civic Square ACT 2608
                                                             phone / facsimile (02) 6259 7922
                                                             Australian CF Research Trust
                                                             PO Box 254, North Ryde NSW 1670
                                                             phone (02) 9878 5250 freecall 1800 635 008

                                                                                                                    JANUARY 2002
                                                             facsimile (02) 9878 5058
                                                             CFA gratefully acknowledges the support of LJ Hooker
                                                             franchises across Australia.
How do I cope with the shock?                                 Usually depression will work itself out in its own time,        What about the rest of the family?                            What should I tell my friends?
Finding out that your child has a potentially life-           but it is very different for each individual. It often helps    Some parents who investigate their family trees have          What people say to their friends is a decision they can
threatening condition can be a frightening experience.        to talk with someone who cares.                                 found instances of infant deaths many years ago. The          only make themselves. Some people are not inclined to
It may take a while for the information to be absorbed.       “I felt so guilty about not being able to feel good for so      babies have either died inexplicably or from pneumonia.       disclose problems outside the family, or they may wish to
                                                              long ... about two years ... then I heard someone else say      It is quite possible that these children had CF and it does   protect their child from feeling ‘different’.
“When they told me, I couldn’t even pronounce it.”
                                                              it took her five years before she accepted it.”                 seem to help some parents to see a pattern and not to
“I know it was serious by the way they spoke. I didn’t                                                                                                                                      “When I told my best friend about Cystic Fibrosis after
                                                                                                                              feel as if what has happened to them is a ‘bolt out of
hear anything after Cystic Fibrosis, not one word                                                                                                                                           seven years, she was shocked that I had kept it from
                                                              Is it all my fault?                                             the blue’.                                                    her, but I wanted our daughter to feel she was
sank in.”
                                                              Because you are a genetic carrier for CF you may feel           Other family members may be concerned at their chances        considered for herself and not for the condition.”
                                                              responsible in some ways for your child’s condition.            of having a child with CF or they may be worried about
Why am I so angry?                                                                                                                                                                          On the other hand. Some parents feel they can contribute
                                                              People who are grieving frequently feel guilt and need          symptoms their children have which resemble CF. Genetic
Many events in life seem to have no explanation and no                                                                                                                                      to helping those with the condition by publicity,
                                                              to express it. Talk about it to someone who will listen         counsellors and doctors with a knowledge of CF are the
justice. In frustration many people look for someone or                                                                                                                                     fundraising and educating wherever possible on the
                                                              with respect and not argue.                                     best people to discuss this with.
something to blame. Parents may resent someone’s                                                                                                                                            problems of CF.
attitude at the time and become angry with them.              “I felt so awful when I found out it was genetic.
                                                                                                                              The reactions of close family members can be a problem.       “I felt the problems of families were not known and that
                                                              Of course I hadn’t known, but no one would let me
“There was something awful about the way he told us.                                                                          Grandparents who are often very upset at the illness, may     children could suffer from the ignorance of CF. I mean,
                                                              talk. They kept cutting me off and trying to reassure me.”
I know that I’ll hate that doctor forever. I’m glad we                                                                        claim that the condition does not come from their side of     at school, taking tablets is really hard for kids if no one
                                                              Try to work out your feelings about the situation and clarify   the family.                                                   knows anything about it (CF).”
didn’t have him looking after our son.”
                                                              them for yourself so you can deal with them.
“My aunt said she thought it would be a good thing if                                                                         “When our daughter was ten years old I talked about           “It’s really important people know about this, after all,
she died young. I can’t forgive that. My baby was sick        “For a long time I said ‘why me’?”, then one day I said ...     CF with Ian’s mum. I’d said it all before so many times,      it can happen to anyone can’t it?”
but I wanted her to live.”                                    ‘Why not me’? What was going to stop things                     but as we sat having a cup of tea together, I think she       “The best thing I could think of to do was to raise
                                                              happening to me?”                                               heard me for the first time. She finally realised it was
Because CF will change your life in some ways, you may                                                                                                                                      money for research.”
                                                                                                                              something from both of us.”
not want to accept the condition or medical opinions. You
                                                              Will my relationship with my partner                            It is probably best to work out a strategy together to deal   What about coping with treatment?
may even look for alternative ways of handling your child’s
condition. Remember, it is healthy for you to have an
                                                              be affected?                                                    with attitudes that could cause friction. For brothers and    Treatment for CF can disrupt family life as schedules
open mind but it is also healthy for your child that you      This is a time when extra strain could be placed on your        sisters in the 10-14 age group there is printed material      have to be rearranged. This can be a serious problem if
have all the help she/he needs in fighting CF. Clinics        marital relationship. Individuals, even if they are close,      available from the Association which will answer a lot of     there is more than one child with CF in the family, or if
have a good track record for fighting this condition.         react differently to bad news and communication could           their questions. You could perhaps use it as a starting       both parents work. Should this apply to you, don’t
                                                              become difficult. Try to be understanding with each other       point for a family discussion.                                struggle with the impossible. There are people you can
Will I always feel like this?                                 but don’t expect the other person to know exactly what                                                                        talk to and there are resources you can use while you
                                                              your feelings are. Accept the fact that you may need                                                                          adjust to new routines. Whenever there is extra pressure
Sometimes grief interferes with your ability to enjoy
                                                              support. Talk to a close friend who will listen or even                                                                       on the family, there is help available.
yourself. If your appetite and sleep patterns are affected
                                                              use a professional ear to take some of the strain off
or you have prolonged bouts of sadness and lack of
                                                              your relationship.
motivation, you are probably depressed.
                                                              Try to avoid making big decisions at this point. You already
                                                              have a lot to cope with and even if you move house or take
                                                              a holiday, you will still be taking this problem with you.

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