Having a shock diagnosis of cystic fibrosis thrust upon parents is never going to be easy. While people mean well, I have found that in the beginning I just didn’t know what to say to people. When they enquired about my new baby’s health I felt awkward and struggled to find the words. Did they know? Had they heard? Most of the time, even now when people ask, I just say she’s doing great and very little else. In the same vein other people also feel awkward. I try to imagine what I would say to someone if they told me their baby had CF. I’d like to think I would try to say something fairly supportive but who knows unless you’re placed in that situation.
I am very lucky to have a great support network online from other CF mams and we have all recently discussed this awkwardness in terms of dealing with other people’s comments with regards to cystic fibrosis. So without further ado I thought I would share with you all the top ten comments made to us CF parents – all real. Some good, some bad and some downright hilarious! Enjoy!
1. ‘But they look so well!’
Ah yes, as if we have just made the whole thing up. I wish. Cystic Fibrosis is what is known as an invisible illness. Patients will always look well on the outside despite lots of internal problems, affecting many organs in the body.
2. ‘Will he/she be able to walk?’
Yep, again CF affects internal organs only. No physical disability at all.
3. ‘My brother’s friend’s, cousin’s, next door neighbour had CF. They died when they were twelve.’
Lovely. Just lovely. And just what you want to hear when you have a baby with CF. Hopefully, whoever said this was talking about something that happened a very long time ago when medicines and treatments weren’t as good as they are now.
4. ‘Has he/she got to have that EVERY time they eat?’
People with cystic fibrosis are pancreatic insufficient and before they eat something, if it has fat in it, they have to take medication called Creon. This helps to absorb everything in their food. It’s a right pain, especially when they are too small to swallow capsules and the contents have to be poured onto a spoonful of apple purée. Trying to work out how many pills they will need for different food items is also a pain. So comments like this will no doubt grate on any CF parent!
5. ‘So they have to have all this every day?’
Linked to the above in relation to the syringes full of different medicines babies have to have each day, not just once in the morning, but at night too.
6. ‘But they will grow out of it though?’
Sadly, no. Cystic fibrosis is a genetic condition which progresses as a child grows.
7. ‘They can just have a lung transplant then they will be fine.’
Ah yes, wonderful. A major operation with huge risks. Lung transplants are amazing but new lungs do not grow on trees. Despite a recent major push in the UK, lots of people are still not signed up to the organ donation register. I also cannot even envisage this for my child.
8. ‘I don’t know how you deal with it all, you’re all so strong, you’re inspirational.’
These are really lovely things to say to people but what most CF parents will say is that they are just doing what anyone else would do in the same situation. There is no choice; you have to deal with it and try to stay positive every day. CF children do look so well because of the many hours of medicines, care and treatments that parents do behind the scenes.
9. ‘But they won’t know any different as they’ve been on all the medication since being tiny babies.’
Great! Yes, they won’t know any different but we all wish things were different for them.
10. ‘How severe is it going to be?’
We all wish we knew the answer to that. CF affects everyone differently. I have read about twins who obviously have the same mutations and one is still going strong while sadly the other passed away at a young age. Who knows? But what I do know is that nobody is guaranteed a ‘tomorrow’ so enjoy every second!
If you want to find out more about cystic fibrosis and ways you could help click here.