"I don’t have a community with people with CF my age, who can’t take modulators": Abi's story
Tell us about your start to work
I wanted to do animal care and studied that at college. Sadly, I grew loads of bugs and knew I couldn’t do it anymore, it was too dangerous to my health. So moved into musical theatre, which I’ve done my whole life. I did that for two years, but even that was a struggle. When we had shows, I’d miss so much to have IVs. I got the lead in my first year and I’d have to show up with my IV line in, and I was shattered.
It was a lot of work to push through. I wanted to go to stage school, but CF put a halt to that. I can’t do a full day, it’s too exhausting. I can’t cope as much as I want to.
Since then, I’ve mainly been doing café work. I’ve also tried bar work, waitressing and retail jobs. But my CF has always been an issue. Whenever I need time off, a lot of people don’t really understand what it is, and it always ends up being a lot of hassle. I struggle to get the right amount of hours and I feel like I have no stability.
How did the idea for your business come about?
I just want to be my own boss. I get such terrible anxiety asking for time off. I don’t like to stand out because my CF is a problem. I want to prove it’s not an issue, but it is, it’s a part of me.
I auditioned for a princess party company because I missed college and I missed performing. It sparked a real passion in me because I have no hobbies anymore. I learnt all about the makeup, the hair, costumes, and working with kids.
It’s something I could look forward to and it was a really rewarding job. When I am dressed as a princess, I feel like I didn’t have CF at all. Despite that, I did an event where I was actually on IVs. It was 4 hours long, at Christmas, and I’d just come out of hospital. I got the costume fitted to cover my port, and I realised no one would ever know I had CF. I thought it was such an achievement. I realised it’s want I wanted to do.
The place I worked closed their business because the owner had a baby. I wanted to stay loyal to her, but when she said she was leaving, I knew it was the perfect time. I had no money, so I had to start from scratch.
How has the Helen Barrett Bright Ideas Award helped you?
My mum told me to look for grants with the Trust. I got the Joseph Levy Education Fund before, and when I saw the Helen Barrett Bright Idea award, I realised it would be perfect. The deadline was only a month away – I had to pull together a business plan pretty quickly. It’s all so new to me, so I thought that if I didn’t get it, I’d maybe try again the next year. When I got the call, I was at work and having the worst day. I was closing up. I found out I got the full amount that I asked for, and I was in shock. I couldn’t believe it. It’s going to seriously change my world.
I was having such a rough time, so it’s perfect timing. My mum has always cared for me and hasn’t had a stable career since having me. She’d have to take me to my appointments. I said that if I was going to do this, I wanted her to be a part of it. I lost my nan in December, her mum, so being able to tell her we were going to do it together was incredible. I recently made my first purchase and can’t wait to start making announcements online. By the summer I’m hoping everything will be ready to go.
I’m going to start with three packages and see how that goes. In the future I’d love to hire other performers and then that means I can step away and train people up. Honestly, there is so much I want to do! I have so many ideas, I can’t wait to start!
What’s life with CF like?
I was diagnosed with CF at five months old. Growing up, I was always quite well and had a high lung function, but I had stomach issues.
When I was around 11 or 12 I had my first bronchoscopy and began having to have IV antibiotics once a year. This then went up to twice a year and then three times a year up to the age of 16, when I moved into adult care.
This meant my CF centre was now an hour away. I got a portacath and now have IVs every three months, but I’m allergic to a lot of antibiotics. Basically all of them. I also can’t go on modulators because of my genetics. That’s the biggest struggle out of anything. If I had the opportunity, I feel like I would be in a different situation to what I am now. I don’t have many options, and I am constantly getting pseudomonas and aspergillus. I’ve also had a few sinus surgeries, stomach blockages, and as I’ve got older it’s got worse and worse. I’m only 20 years old.
I used to have a strong online community of people with CF, and since modulators have come along, I’ve felt pushed out. I don’t have a community with people with CF my age, who can’t take modulators, which is sad. It’s like an illness inside of an illness.
