Helping Siblings Cope With CF


I have been meaning to respond on the topic of the effect of CF on siblings in a family for quite a few days. I can’t even remember now who was asking about how to deal with the other non-CF siblings. At any rate, this is a topic that is of interest to me. Having a chronic illness and one as scary as CF is VERY hard on the other siblings. It has affected both my sister and my brother’s entire lives. I came from a very nurturing and loving family. My parents did a lot of things right but also made their share of mistakes when it came to how our family dealt with my CF. CF can function like an alcoholic in the family. I will explain how this worked in my family. I know everyone’s experience is different. This is just mine.

I was diagnosed with CF when I was 6 months old. My oldest sister(non-CF) was the first grandchild born on both sides of the family. She was the star and rightly so! Then I was born 3 years later and come to find out I had CF. So I was the “sickly” child and totally stole the spotlight. My sister had no choice but to fade off into the background as far as all our relatives were concerned. And they were good people – this all happened at an unconscious level. My parents didn’t even see it happening. My parents then went on to adopt my younger brother because they didn’t want to pass on their CF genes again if at all possible.

Here is what went wrong in our family. My parents philosophy was they just wanted us kids to be happy, happy, happy all the time and they would take on all the worrying. Well, by doing that we never really talked about CF. It is a little hard to understand. My mom did all my treatments religiously and I went to a CF center and all. I couldn’t have had better care. But because my parents never showed us they were concerned or worried or scared my brother and my sister kept all their fears bottled up inside. They had to find their own ways of coping.

My sister has told my me how scary it was to have to share a room with me and hear me cough all night and watch me sleep in the big creepy mist tent and not really understand it all. My sister remembers growing up and always feeling stressed.

My sister had years of unbelievable guilt. Being my only biological sibling she took on the burden of “why not me”. I would never wish this pain upon anyone. To compensate for my CF, I think she has made her life harder then it needs to be – again at an unconscious level. She is a total overachiever, work-alcoholic and expects way too much out of herself. In her early twenties, she had a drinking problem but now hasn’t drank for 10 years. And is this all do to having a scary illness in the family? I do believe this is the toll it takes on a family. Especially one like mine where there is so much love.

My brother coped in an entirely different way. He had a lot of anger. Whenever I was hospitalized he would create some big “crisis” in his life which would require a lot of attention. I think once again at an unconscious level this made a scary situation not so scary. My brother is a wonderful person and we are very close but we had a “truth hurts” type fight when I was about 19 and he was 17. He said to me “You get all the attention just because you aren’t going to live as long!” Or something like that. But you know, it is hard to always have been in the shadow your whole life. I completely forgive my brother for saying that. It is the truth. I left for college but my mom said he cried for days. He couldn’t believe he said that either. But really it probably felt good to get it off his chest.

As adults now, we talk about growing up with CF in the family and what we could have done to make it easier on everyone. My parents had the best of intentions but my brother and my sister needed to be able to communicate more and talk about their fears and guilt and yes, at times their resentment. My parents put a lot of energy into making sure we all were happy and stress free while at the same time it was teaching everyone in my family to not communicate. But how many families have this problem – please stand up!:) We are all better now- very close and what ever happens with my CF in the future we will deal with it together and openly.

My advice to all of you young families – take a good look at what is happening to the other (non-CF) kids in your family. And remember how hard it is for them- ASK them how they feel about the CF. And really listen. Let them feel fear, resentment and anger- they are normal feelings but don’t for a minute let them feel guilt. Get them some help for that. Life is too short for all of us.