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 have 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 normal?/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 can’t acknowledge how hard it can be for him just because he’s not in a wheelchair/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.
(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 vigorous 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 1980’s CF was known as a childhood 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.
“It’s just like my child. He’s got eczema- 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 eczema. Not sure if rubbing some cream on his chest will help though.
“At least I don’t have to be putting that medication inside him any more”
This was an innocent comment made by a Mummy who could stop giving their baby medication for colic after a few weeks- which is awful don’t get me wrong- the sleepless nights, the crying- its agonising. And no one wants to have to give their bundle of joy medication.
But perhaps don’t say that 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.
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.