Familial difficulties

Question

Hello.

My 7 month old daughter is affected by cystic fibrosis. She was operated on day 1 for an atresia and hospitalized several times, including because of "mucus jam".

How could we react when the family is heartless or, worse totally fled, or strikes us as "you radicalize your words that are extremely violent (note that I just have remember them that we have to wash hands regularly, and especially after going to the toilet - thing that some don’t do -. I don’t understand what could be shocking because for me, it is a fundamental rule of hygiene. Furthermore, I said it calmly). Apart from this episode, we have to face with the desertification of our family, or with his misunderstanding. In this way, by example, for the mucus jam : "but all children could be constipated". Despite all the explanations of the world, nothing to do.

I am aware that everyone reacts in their own way face to the disease: "escape, denial of illness etc" but could you tell me what would be a good attitude to adopt? Perhaps ignorance, but ignorance is a very cruel feeling....

Thank you in advance for your reply.

Answer

Dear Questioner,
It is never easy to actually talk about the disease, whatever it is, with ones relatives (family, friends ...). Some parents prefer not to discuss about the disease and this position is quite respectable. On the other hand, you have chosen to talk to your friends: this is a good choice because it’s easier to talk soon after the diagnosis announcement. Even if the situation seems difficult at present, the chance are that little by little, your relatives evolve, and then provide you an important support.
The situation you describe is not uncommon in families affected by cystic fibrosis, especially just after the diagnosis announcement. Several authors have reported how parents could feel “strange”, isolated, as their concerns were different from those of other parents and as their relatives could seek to move away. Illness confronts to the difference, to the powerlessness. It can cause suffering and scare. Illness is often unknown, and one fears to approach it to know better.
Thus, among your friends, your family, no doubt that many don’t know how to behave with you and your child. That’s why they could be clumsy. They could get away, be silent, not daring to speak about the disease or to show anxiety. You can reassure them by explaining, with your words, what CF is, what you have to do everyday to manage the disease. You could also try to tell them what you expect of them. Keep in mind that everyone needs time (time shorter or longer, depending on each one) to live with the disease and accept changes that may go with it.
Also, you don’t have to stay alone to face the difficulties. Indeed, if you wish, you could absolutely speak about it with the CF Center team. Especially, the psychologist is able to listen to you and help you find the right attitudes for you. The team will perhaps offer therapeutic education sessions. It's an approach that could be given to help you to better understand CF, to act and solve everyday problems you may encounter, such as communication difficulties with family or relatives removal.
I hope this answer helps.
Sincerely.
Lætitia Guéganton

20.06.2011