‘I have an ill­ness, but the whole fam­ily suf­fers’

The Irish Times - Tuesday - Health - - Health Lifestyle - Be­nat Brod­er­ick

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, 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 – 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. 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 he sees it as me getting more at­ten­tion, which 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, it must be dif­fi­cult for them. Go­ing into hos­pi­tal 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 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.

Newspapers in English

Newspapers from Ireland

© PressReader. All rights reserved.