When I grow up: YAG's new project spotlighting different careers

Feature -

What did you want to be when you were younger? Doctor? Footballer? Vet? Firefighter? Dancer? The hopes, dreams and aspirations of the CF community are as big and far-reaching as everyone else’s. That’s why our Youth Advisory Group (YAG) have launched a new careers project, When I grow up..., to show young people with CF the possibilities that are out there when it comes to planning a future career.  

Amy on horse
Amy

From writers to stunt performers, as part of the project, we heard from people with CF in a range of careers about their working life, juggling CF with their day job, and the advice they’d give their younger self.

Amy, SPACT performer, motion capture and voiceover artist

Can you describe your job in one word…

Mindblowing!

How does CF affect your job?

I’m very lucky that since starting Kaftrio my health, lung function and stamina have all really improved. My job can be really varied depending on the production. We could either be standing still in a scene, doing a few actions, or we could be literally running through explosions or horse riding through the woods. I have to make sure I am physically able to do all this and do this repeatedly.

Do you need any qualifications to do your job?

I did study performing arts and acting through GCSE to A Level but I never went to drama school. I think taking lots of acting classes and getting experience is beneficial to people who haven’t gone through drama school. And if you want to improve your skill set, doing loads of training in combat, weaponry, horse riding and things like that can be helpful. Making contacts with lots of people too, whether it be casting directors, actors, crews, production or studio.

What motivates you in your career?

Being able to drive to sets, either on location or studios, and calling that my job is mind-blowing to me. Getting to meet all the other cast and crew and building that family you’ll be working with is really fun. And seeing yourself on the big screen is motivation for me to keep going.

Jemma, Senior Strategic Change Portfolio Manager at PwC

How would you describe your job?

I help the company change and transform itself, so we stay ahead of our competitors and remain one of the top professional services firms in the world. No pressure!

How have your employer helped you to manage your CF and work?

My employer is brilliant at flexibility, whether that is in terms of hours, or working at home or in the office. I’ve always felt very supported to do what I need to do in order to manage my CF and work.

What advice would you give your younger self?

I would tell my younger self that I’ve got a job! I’m doing it. I’ve got a career. I was never sure we’d get to this point. Don’t be too hard on yourself and don’t worry about what other people think. What’s most important is finding something you enjoy doing and if you put your heart and your mind to it, you will be successful despite CF. Yes, it will throw curveballs and challenges along the way, but if you stick at it you’ll be good!

Don’t be too hard on yourself and don’t worry about what other people think. What’s most important is finding something you enjoy doing and if you put your heart and your mind to it, you will be successful despite CF.

Jemma

Polly, writer

What advice would you give your younger self?

Follow your heart. If I could tell my 17-year-old self where I’ve got to and how far I’ve come, then I might have got here sooner! But the journey has been interesting and exciting, and I wouldn’t change it.

What is the biggest misconception about your Job?

The biggest misconception people have about authors is that they think we’re all like JK Rowling and have billions of pounds. I can tell you now that writing is not very often a particularly lucrative career. It’s something you do because you can’t not write; it’s as important as breathing - and we all know how important breathing is.

What are you most proud of?

It's really hard to choose the thing I’m most proud of in my writing career. There are so many incredible moments. Signing with a literary agent. Getting a publisher. Holding my book in my hands for the first time. But I think the thing I’m most proud of is that I never gave up, and I think that’s partly due to CF because we’re fighters and we carry on and we push for what we want to do.

Jade
Jade

Jade, Information Officer at Cystic Fibrosis Trust

Can you describe your job?

I work part time as an information officer at Cystic Fibrosis Trust, which means I help to produce a lot of our info resources, such as factsheets, webpages, videos, and the clinical consensus documents we make for CF professionals.

How does CF affect your job?

Having CF and working on CF-related content does have the potential to get a bit intense. I appreciate I can work part-time so I can focus on other things I enjoy. It also brings a lot of other positives to the role. I feel like I can intuitively sense when there's a piece of info we’re missing and when I'd like to know something, so that’s been really useful. This role has more flexibility than I’ve ever experienced before and that makes it easier to take care of my CF and myself.

Have you ever lost a job due to your CF?

I’ve never lost a job per se, but I’ve definitely quit a job for reasons related to my CF. Anyone who finds themselves in a similar situation, I’d say ask for flexibility early on and don’t let it build up. Employers are legally obligated to give you adjustments to your workday that are reasonable for everyone. And if you feel you are being discriminated against in any way, get advice quickly.

I think the thing I’m most proud of is that I never gave up, and I think that’s partly due to CF because we’re fighters and we carry on and we push for what we want to do.

Polly

Nicola, PhD student

What is the biggest misconception people have about your job?

I think people don’t always see how different PhD experiences can be to an undergraduate or postgraduate experience. You don’t have lectures in the same way or classmates in the same way. It’s such a personal and self-driven project that requires a lot of motivation.

Describe your job in one word…

Kaleidoscopic!

How do you stay organised?

As my job is so self-directed, organisation is a very good skill to have. I have an online calendar where I schedule all my work events and meetings and I like to write down short and long-term goals. So at the start of the month I write down all the big things that I need to achieve each month and every day I write a to-do list, and schedule that day so I can be as productive as I want to be. But within that, I try to take care of myself and know that I’m not going to be super productive all the time and that’s okay.


Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Cystic Fibrosis Trust provides lots of great resources on all aspects of life with CF. Along with the medical advice you receive from your CF team, our information can help you make informed decisions about your lifestyle, treatment and care, however you’re affected by cystic fibrosis. All our information is written and reviewed by experienced information and health professionals. 

Explore our resources

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