My name is Benat and I am a 14-year-old boy living with cystic fibrosis (CF) – a genetic disease that affects your lungs and pancreas. My younger brother is nine years of age and, thankfully, does not have CF – but he lives with a brother who does, so this can be quite challenging.
As time progresses, CF tends to get worse. It’s quite tough in the sense that I have to be treated differently to my brother, because with CF my needs are quite different compared to my brother’s needs or anyone’s needs without CF.
For example, one thing that is different is I need a high-calorie diet – about 4,000 calories a day (a 12-year-old without CF needs only about half that). As you can imagine, that would be quite hard for anyone, but it is especially difficult when it’s every day.
And, for a nine-year-old, it can be quite difficult as not many children understand what a different diet entails. In a nine-year old’s eyes (or anyone’s eyes really), seeing your sibling frequently eating loads of junk food would certainly make you want to follow their path. Nine-year-olds aren’t mature enough to understand, which is perfectly understandable as they are still learning, but it’s certainly just the age and over time it will become more understandable.
The trickiness of having a disease where you can catch a cold and easily be bed-bound is quite annoying, but it must be more annoying for a brother or any sibling who sees you not having to go to school – especially when you have been off for a week. Anyone seeing their sibling off for a week would obviously want to copy them.
Sometimes, I can be coughing all night and not get any sleep, nor can anyone else. To a nine-year-old, it is just an excuse in their eyes, but it’s really not. The uncertainty of the next day proves its difficulties when I may be well one day and, later that day, I may come home from school coughing my guts out and feeling terrible.
More attention
With CF, you tend to go into hospital for IV antibiotics to help treat whatever the problem may be – in my case it’s usually an infection. The difficulty of leaving your daily life and routine behind and going into hospital for two or even more weeks can be a pain, but it can be even more irritating for my brother as, for him, he sees it as me getting more attention, which in all honesty is true, and is very difficult.
If, God forbid, anything happens to anyone – if they break a leg or have an accident – of course all the attention turns to them and, of course, your daily routine would be affected. But if you think of it through a nine-year-old’s eyes, and it is happening extremely frequently, it must be difficult for them. Going into hospital, whether it’s for a stay, clinic or whatever it is, has a big impact on my brother and the whole family.
Because I have a chronic illness, it’s not just me who goes through the pain. It is the family and my siblings too, and I think it’s important to highlight the fact that if one person has something wrong with them, the whole family suffers, as well as the person with the illness or the disability or whatever the problem may be.
[ Benat (13): my daily routine living with . . . Cystic FibrosisOpens in new window ]
