Cystic Fibrosis, Family

Weird things people say to parents of children with cystic fibrosis

Weird things people say to parents of children with cystic fibrosis www.rrandj.wordpress.com

It’s still very early days in our family when it comes to learning about, coping with and coming to terms with our son’s diagnosis of Cystic Fibrosis.

We obviously know a lot more about it now than we did before we had a son with the condition as is inevitable, but even though we ourselves were pretty clueless about the condition before Joe was born we are still often surprised by how little others know about the condition and we are sometimes shocked at some of the things people say to us or ask us when they find out Joe has CF.

I thought I’d just share with you some of the things people have said over the past year and a half that has took us by surprise and sometimes completely baffled us- so if you meet someone with a child who has CF in the future you know what not to ask/say!

I don’t blame any one for saying these things or having questions- its just a reminder to ourselves I suppose that more awareness around Cystic Fibrosis needs to be made- especially as its the most common life shortening genetic disorder in the UK!

Cystic Fibrosis? I thought that was a problem with your ovaries?”

I would have thought that it was quite clear looking at my son that he probably doesn’t have ovaries…The person who asked this was of course thinking of Polycystic ovary syndrome which I suppose sounds a little bit like cystic fibrosis? A Lot of explanation ensued.

But he looks fine!/ So well?/like there’s nothing wrong with him!”

This gets asked/stated every few days really. It can get a little wearing- although it’s a perfectly innocent statement it sometimes feels accusatory like they don’t really believe he’s ill or acknowledge how hard it can be for him just because he’s not in a wheel chair/on oxygen etc.

You cannot tell all about a person’s health just by looking at them- that goes for a lot of chronic illnesses, that goes for thin people/fat people too- You should not judge a persons health merely by the way they look.

You can’t see his disability, he does look like any “normal” 18 month old.

But he still has Cystic Fibrosis whether you can see it or not.

He still has to have 4 sessions of physiotherapy a day, he still has to have 30 doses of medication a day, he still has to have high calorie foods and enzymes to help his body digest food and nutrients, he still has to have injections every four weeks over winter, he still has to go to hospital at least every two months for the rest of his life to see a dietician, lung nurse, physiotherapist and consultant.

So yes, Joe does look well. Thank you. But he still has to do all the above just to be able to do the “normal” things that most people take for granted every second of every day like breathing and eating.

weird things people say to parents of children with Cystic Fibrosis from www.rrandj.wordpress.com Cystic Fibrosis Awareness

(normally I just say thank you. Its more succinct.)

Cystic Fibrosis- that’s where they hit them on the back isn’t it?”

This unfortunately is what the majority of people’s knowledge of Cystic Fibrosis comes down to- this is what I thought of when we first found out Joe had CF so I can’t blame anyone. But it’s evident that more needs to be done to raise awareness of the condition. It is so much more that just hitting someone on the back.

Treating CF in order to keep the effects at bay for as long as possible is a rigourous onslaught of relentless treatments, medication, diets, IV antibiotics, exercise…on and on, day in day out…. you get the idea.

Is he better now?”

A lot of people don’t realise that there is CURRENTLY (we live in hope) no cure for Cystic Fibrosis and all treatment is used to help prolong life and stave off the effects of the disease. Fortunately life expectancy has increased dramatically over the past decade or so- before the eighties CF was known as a child hood disease as sufferers typically didn’t live past 10 years old. Now life expectancy is 36 years old and that is expected to increase with the rise of modern medicine and treatments.

So no, he’s not better now, but he’s doing great.

Our Little Man
Our Little Man
It’s just like my child. He’s got (insert mild treatable illness here) he just takes his medication and he’ll be fine.”

Yes, yes. A life shortening genetic disorder that causes the slow deterioration of the lungs, a non functioning pancreas and infertility is just like having a treatable none threatening illness. Not sure if rubbing some cream on his chest will help though.

At least I don’t have to be putting  medication inside him any more”

This innocent comment has been made by many a Mummy who could stop giving their baby medication for various illnesses after a few weeks- having to medicate your child is awful don’t get me wrong- the sleepless nights of teething the crying from colic-its awful. And no one wants to have to give their bundle of joy medication.

But perhaps don’t talk about medication with such vehemence to the lady who has to give her child up to 30 doses of meds a day in order for him to survive.

Have you tried giving him Actimel yoghurt drinks? So and so has one of those everyday and hasn’t had a cold for months!”

Again another well meaning comment by someone who had good intentions. But I think if CF could be cured by drinking Actimel we would have found out by now.

Oh, he’ll just have lots of colds.”

This was said by a GP.

To us. The parents of a four month old child with a recent diagnosis of Cystic Fibrosis.

We had gone to him because we were struggling coming to terms with Joe’s condition as Joe had been in hospital for two weeks on IV antibiotics and we were finding it very stressful.

He’ll just have lots of colds. Needless to say we have moved practices now.

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30 thoughts on “Weird things people say to parents of children with cystic fibrosis”

  1. Joe is just too cute! There is so much potential for him and I pray that you help him to live life to the full! I am 40 with CF and was diagnosed at birth! If I may offer some advice…please don’t wrap him up in a bubble! Let him live! Let him experience everything life has to show him! God bless you all!

    1. Ahh, thanks so much for your lovely comment! Glad to hear you are doing so well, yes we will try our best to let go and let him live life to the full! (Although its hard sometimes to let go of control)! Xx good luck to you too!

      1. That does seem to be true sometimes, I wonder if some people struggle to think about what they are going to say before they say it- if there were more listening and understanding and less talking and judging in some circumstances then the world would be a better place!

  2. Oh well its not like it’s cancer. Think yourself lucky! This was a statement I got off what was a very good friend who was jealous of the money my son, now 18, was getting because of his illness. In a lot of cases cancer as we know is curable, sadly in others it’s not. We.don’t have that glimmer of hope. We have to sit and watch our children deteriorate in front of our eyes and not be able to do anything to stop it. have to watch him take his 72 tablets a day to stop infections attacking and watch him do his.own.IV’S, one of my proudest moments there. I think we are lucky to have these wonderful children given to us. I just wish there was more awareness for it. Good luck for the future. Not that you will need it. You will be a pro before you know it x

    1. Thank you for your kind words and your contribution to the post. Unfortunately I think that this is a common idea that people have about Cancer being the be all and end all of terrible illnesses- don’t get me wrong it is terrible and I have many family members who have suffered from and died from cancer too. It is awful, but it shouldn’t be used to down play other peoples problems and other conditions. I think cancer is perceived that way because it is more common and well known, and the fatalities can be more immediate. As Cystic Fibrosis is rarer (even though it is the most common fatal genetic disorder in the UK) and people are born with it so they spend there whole lives with the condition rather than getting a shock diagnosis in later life (although this still does happen) it is perceived as being less serious by some people and that is why more awareness needs to be made of the condition. I really feel for other families who have been touched by even rarer conditions that are virtually unknown about in the public domain- charities like the CF Trust in the Uk are life savers to parents and sufferers if not only for access to advice and support. People get jealous of the most unusual things and that becomes more apparent when you have a child who receives extra care or support. Some other parents can get jealous not only of any disability benefits your child receives but also any extra attention because of ill health which is baffling!! I hope your son is doing well and you should be very proud of him, good luck to you and your family too x

      1. He is an absolute star. Never moans, never complains, goes to college and works part time, current fev1 is at 59% and he has abpa which is currently being plagued with aspergillus. He makes me laugh and cry at the same time. I wouldn’t change my boy for anyone or anything. We nearly lost him aged 7 due to an infection in his line, but he pulled through. His expectancy at birth was 11 years. He’s almost double that and its all down to the amazing staff and St James in Leeds. It’s normal life for me. I have no other children so he is all I know. X

  3. Oh gosh that’s just the beginning! My mom was asked all sorts of questions/things that could cure both me and my brother when we were growing up. Heck even today I still have such ignorant comments made to me such as “go smoke ya another one” to which I reply “if only it was as simple as that but unfortunately I have an incurable genetic disease that has plagued me with this cough since birth and may some day need a lung transplant just to continue breathing, but the upside is I can hack up a lougie better than any guy or gal I know.” People are like omg I’m so sorry afterwards. Its great to see their faces. But some comments my moms has had other than those were: If you just pray to Jesus it will cure her (I have actually had this said to me too and I responded with “I have and clearly God wants me stuck with it) thank goodness she had better common sense and the fact that she was a nurse to know that praying won’t cure me, another one was that my mom must be a huge sinner and that me and my brother were cursed with this disease because of her. The list goes on but trust me you will find some real wack-a-doos out there.

    1. Thanks for your comment, its amazing (and a bit scary) to hear some of the things people have said to other families! Some of the things people say with the best of intentions are disgusting, no matter what your beliefs are, parents are riddled with enough guilt as it is in everyday parenting without being made to feel blamed for genetic conditions that are totally out of their control. There are some very strange people in the world. Hope you and your brother are doing well!

  4. What a well-written article! Thank you for sharing. I’m a researcher who strives to find cures for diseases such as CF, & I pray for more awareness for this disease as well as a cure! On another note, what are some of the things people have said that you’ve found comforting/appropriate?

    1. Hi Ally, thanks for your response and kind comments! Sounds like you have a very important job! keep up the good work, I think I shall write a blog post about comforting and appropriate things to say/do as a response to your question! Off the top of my head the best responses have been from people who have asked questions and tried to understand the condition more, people who have been open about their lack of knowledge but thirsty for more information and also people who allow you to feel vulnerable and upset especially when the diagnosis is first made, without trying to distract you from your emotions or without saying meaningless platitudes. But its very hard for other people to know how to respond, and I don’t blame anyone who feels stumped with what to say, its a natural response. thanks again for your interest and look out for my next blog post!

  5. When my daughter was diagnosed at birth her pediatrician told us that CF was “life altering, not life threatening.” Yes, we immediately changed doctors and every time I see that someone with CF has passed I want to call and scream it at him!!! My daughter is almost 6 and doing really good! Great article! Hugs to you Momma!

    1. I understand completely, it’s a fine line between being positive and totally ignoring the serious implications of this fatal genetic condition- I think it’s much more helpful for doctors especially to be realistic. thanks so much for your comment, good luck to you and your daughter!

    1. It’s so sad when doctors and medical professionals- who we all have to put so much faith and dependency on, say things so ignorant. We were warned by our CF team that a lot of GP’s don’t know a lot about CF or have outdated information and may say and do some inappropriate things- we soon found out how true that was! thanks for your comment and for reading the blog!

  6. My mother was always asked if my brother had “whopping cough”. But this was almost 50 years ago. Treatment for CF is so much advanced than it was back then.

    1. Thanks for your comments, yes thank goodness treatment is so much more advanced now, I feel lucky that my son is growing up in a world where there is more hope due to medical advancements

  7. After 48 years with CF I could compile a list a mile long. I had a double-lung transplant in 2002 and the most bothersome is when a nurse or doctor asks me how I got it, my reply is always ” please get me another nurse or doctor that knows the answer to that question”. Harsh ? maybe but there is no excuse for someone with a formal education. If they aren’t familiar with the particulars of CF they should look it up before they see the patient. So much has been achieved in finding the cure for CF since I was born and we are so close to making CF stand for Cure Found. The gene therapy won’t help me but it will help your son and so many more. That day is around the corner, have faith!! Blessings to you and to Joe!

    1. Thank you so much for your comments and sharing your story, yes I agree medical professionals having little or no knowledge of the condition is so frustrating and anger inducing, I’m sure we’ll come across many frustrating individuals in the future unfortunately but we can only hope that as time goes on cf awareness will increase massively- apparently it is now taught about on the national curriculum in the uk, this I’m sure can only be a good thing! Good luck and best wishes from the Crawshaw family xx

  8. you have an epic battle on your hands, on both fronts. I have lost to of my children that had CF, my third one is in ICU now trying to get on the transplant list. Peoples stupidity no longer bothers me, the stupid and don’t know it. But ask them who should win dancing with the stars, or what the Kardashians are up to, bet they know those answers. I pray for you and your family. You are correct the worse thing about CF is watching your children die a slow, agonizing death. The joys are learning how to live by watching them. My children are my Heroes.

    1. Hi David thanks for your comments, I am so sorry to hear that you have lost so much to this awful condition and can’t imagine what you and your family must have been through and continue to go through. I wish your third child the best of luck getting on the transplant list although Its terrible that luck has anything to do with it. I’m glad that you have garnered joy from all your children despite the heavy burden you and your family has been given, kind thoughts from all of us here.

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