My name is Coby, and this is my CF story.
I was hospitalised in November 2017 with pneumonia and various other viruses, hence the Children’s Hospital at Westmead became my home for the next six weeks starting with Intensive care for a week and then transferring to Variety ward for five more weeks.
At the time my family and I did not realise that our lives were about to be changed forever.
I had never heard of cystic fibrosis until this – my first admission; many more were to follow. At the time, I was 12 years old and one of two people in a thousand, that is diagnosed at this age.
My case was so unusual, just about every doctor wanted to come and see me.
I have been told that CF has played a role in my lack of height and the slowness of my development. What can I say I have always been on the small side, not looking my age and people judging me.
When it comes to body image, I was always one of the shortest in my primary school, and looking back, one funny thing comes to mind: I used to play the euphonium trumpet, it was bigger than me and the look on parents faces seeing me, the short kid with this huge instrument on stage, was priceless.
It wasn’t until I got to high school that things took a turn as kids can be mean and say hurtful things, but I did have some really good mates that would shield me from being a target. In the end, those who would give it to me about my height and youthful looks liked my jokes and the bullying stopped…
But I would have to say it did get me down at times and made me feel very self-conscious.
So, let’s fast forward a bit… I never really thought much about my height or even my body, but it soon became clear that some things needed to change, and that’s when I got my PEG and was put on growth hormones.
This was a huge change for me. Here I was thinking I was just like my mates and peers but in reality, I was short and underweight. Even though I would eat, my weight was always on the low side, and whilst my mates and peers were getting taller and hitting their goal in body changes, I stalled!
I hated my PEG (still do) and disliked having to have growth hormones, but truth be told, even I have to admit I have seen the changes, and I am catching up to my mates.
Plenty of people tell me that I’m not a bad looking young bloke, but in all honesty, I don’t look 18. I could probably still get away with paying for a kid’s ticket to a movie!
The downside with looking so young at my age is people judge you on how you look. For example, on the soccer field this year, I missed a good chunk of the season because of hospital admissions. My team was the Under 21s this year and here I was up against huge, bearded blokes.
On the field, one of the players asked, “Hey mate, did they borrow you from under 10s?”
Yep, heard it all before. So it did give me bit of satisfaction when at the end of the game I got to say to this guy, “What’s it like getting beaten by a 10-year-old?”
When I was hospitalised in the adult hospital for the first time this year, I had to share a room with various other patients. Many of them complained to nurses asking, “Why am I sharing with a 14-year-old” or “Why is there a boy in the bed across from me? Shouldn’t he be at the children’s hospital?”
This was on several occasions and all from grown women. They didn’t even know me or my story!
They should have known better, “Don’t judge a book by its cover.”
And then, at the end of season soccer dinner with all my mates at Parramatta Club, I had my ID and they interrogated me as to whether it was real or not. And all I wanted was a soft drink!
I suppose what these experiences have taught me is that people can be so judgmental, and I can’t change that. All I can do is hold my head up high, work with my CF team, and look to a brighter future.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
