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Yvonne’s story "When you’re doing comedy, Edinburgh Fringe is always on the horizon, so it’s just wonderful that we got to go."
What was your diagnosis like?
It was not long after I was born that my parents were given my diagnosis. I was failing to thrive as a newborn and I had a distended tummy my mum knew something wasn’t right. My parents took me to hospital and the doctors had no clue what it was, but eventually diagnosed me with cystic fibrosis. I was three months old. This was back in a time when they didn’t know much about the condition, and they just sent my mum home saying a nurse would be in touch, and that was that.
I started on some treatment not long after they sent me home and my parents began to manage everything.
What was it like growing up with CF?
I was treated like “normal” and I never knew anything was wrong with me until I went to school and realised that nobody else took tablets at lunchtime like I did. I also ate different food and was very pale and did have to go to hospital a bit.
I probably wasn’t listening when, or if they told me about life expectancy as a child. I think when you go to hospital with your parents, the doctors tend to speak directly to them, and I was probably only paying attention to whether I’d be staying in hospital or going home. It wasn’t until I was a teenager that I realised that this is something that was probably going to kill me quite young because I was losing friends at the hospital.
The good thing about CF is we look relatively well. We don’t have anything that would make us stand out from the crowd other than maybe a cough or being skinny. In terms of attitudes towards my condition, I’d never really suffered from a lack of confidence because of it. I keep a lot of it to myself.
What was your health before Kaftrio?
Before Kaftrio, I was very much in decline. I had to give up work and I was in the process of being assessed for transplant. I was on IV drugs every four to six weeks and obviously, my mental health wasn’t great. I wasn’t meeting up with friends and was relying more on family to do a lot of things for me. I was on oxygen for exercise.
I remember the day I started my first dose – a man came to the door to deliver my Kaftrio and I said to him, “You’re about to save my life” and he smiled. I even took a picture of him.
Yvonne
What was your experience of Kaftrio?
It’s night and day. I was 48 when I started. I’d been on Orkambi, and then Symkevi on compassionate grounds. Then when the drug was approved in Scotland I moved on to Kaftrio.
I remember the day I started my first dose – a man came to the door to deliver my Kaftrio and I said to him, “You’re about to save my life” and he smiled. I even took a picture of him. I went in with my dad and I had a snack ready, and a glass of milk and I took Kaftrio for my very first time. I wasn't sure what to expect. I had a friend come and visit within the hour and I could hardly speak to him for coughing. I had that initial purge at the beginning and then everything just changed. I could walk, I could stand up straight, I could put weight on, I could eat things, I had energy, I was rebuilding muscle. I stopped coughing and within days I slept better and had more energy.
How does your CF affect you in your day-to-day life now?
In the first few weeks of taking Kaftrio, I had very little CF issues, but within 6 weeks I was on IV’s again and I was gutted. I decided I couldn’t just let this happen again and decided I was going to fight, keep going, and continue getting healthier. I got a dog, so I was out walking more and then within a year of starting Kaftrio I decided I was going to go back to work.
How did you get into comedy?
I’ve always written little things but I didn’t know I was writing comedy at the time. Whenever I was in hospital, I was always writing stuff, and I’ve always turned to comedy as my escape. It was a year since starting Kaftrio and it was coming up to Christmas. I was single, staying at my parents and in my mid 40s and I thought, well this is rubbish. I’m going to do an art course. I was going to do a painting course at a college, and I was looking online and then a comedy course popped up. it was like a lightbulb and a eureka moment. I didn't hesitate and signed up there and then. It was an eight-week course and by the end of the eight weeks, we had to write five minutes of standup and perform it. I did and I just loved it. I was laughing out loud - each week with these new people I had met. I wish I had done it when I was twenty and I might have made some money by now!
What made you sign up to perform at Edinburgh Fringe?
It’s something you can’t ignore if you’re doing comedy. We have the Glasgow Comedy Festival where I performed last year, and I started to meet like-minded people and wanted to start on some projects.. When you’re doing comedy, Edinburgh is always on the horizon, so it’s just wonderful that we got to go.
We applied for a venue and to do the show and when we got agreement, it was like wow, we’re doing this. It was really exciting but also nerve-wracking because you had to pack all the right stuff - meds included, get ready, and make sure you’ve got time off work. It was also exhausting as it’s a 50-mile drive to Edinburgh from where I live so I was doing that twice a day! I only did it for a week instead of the full run of 3 weeks. If I’d done a full run, I’d be on the floor! I didn’t want to overwhelm myself on my first run, and luckily the people I was working with agreed to do it for a week too.
We are now taking a show called Giggles From Glasgow to Manchester this October and Leicester in 2024!
What sort of themes do you talk about in your comedy?
It’s more about life and being a woman. I prefer silly stuff. My themes stem from my feminism and being a woman and what that’s like. I don’t really talk about my CF because it’s too niche, but I have created a show with two other comedians who live with disabilities; my neurodiverse friend Eliott Simpson, and my friend Mark Cooper who lives with cerebral palsy. We did a show called Crip the Light Fantastic which is going to be taken forward as well, back to Edinburgh in 2024. I could say I’m a disabled comedian, but I don’t ever see myself as having a disability.
What are your plans for the future?
I’m living independently now and I’m planning on starting to run - that's a joke! But I am doing a lot more exercise. My partner and I are planning to get married at some point, which is lovely – I’m just waiting for him to formally ask! I’ll carry on working until comedy starts to pay me and I’m looking for an agent. I’m getting up to speed creating reels and posting on Instagram so I’m working hard on my social media and attracting an audience. I hope to make a career out of comedy one day.
You can follow Yvonne's comedy account on instagram at @janet_tenaj_comedy
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.
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