"CF is hard enough as it is, but not being able to have close friends going through the same thing makes it even harder" – Annabelle's story

My CF and diabetes diagnosis

I was diagnosed at 12 months old. CF wasn’t on the heel prick test when I was born and even though my mum knew there was something wrong, the doctors thought she was a paranoid first-time mum. Then, my whole family ended up catching seasonal flu and I didn’t get better. She took me to another doctor who told her I had to go to hospital immediately. They did the sweat test on me, I got my diagnosis, and then had to stay in hospital a bit afterwards.

Apart from that though, I was quite healthy during my childhood. My parents were very strict with medications and physio, so that definitely helped. In secondary school was when things started getting more difficult for me. I had lots of issues with bullying and contracted pseudomonas and had my first IVs. Since then, I’ve had to have them roughly every two years.

When I was 11, I was diagnosed with CF diabetes. I was very, very needle-phobic at the time and struggled with insulin for the first five to seven years. Now I must take a lot of insulin. I also suffered with diabulimia – not taking insulin to lose weight. I’m now on a pump and that has helped a lot. I’m also taking Kaftrio which has helped too.

Isolation and mental health

I have a younger sister, and before she was born, my mum did the test to make sure she didn’t have CF as well. She’s four years younger than me and we had a difficult relationship growing up. It was hard for her to see me unwell and also get a lot of attention as well. She didn’t really get that, and I know how hard it is to explain and understand CF. I also struggled a lot with my mental health when I was growing up, but I’m on medication now, and we are getting along fine now.

I remember playing with children with CF when I was younger, and don’t have a defining moment of my parents explaining I couldn’t be around kids with CF anymore. But when I was around five or six, they brought in rules for cross infection, and I could no longer play with my friends – we had to be at opposite ends of the corridor. 

Something like CF is hard enough as it is, but not being able to have close friends going through the same thing makes it even harder. It’s felt like a bit of a cruel joke from the universe that we have the same experiences and struggles, yet the only way we can bond and discuss it is online. It’s very isolating because as much as the people close to me have been around me, they don’t have lived experience and can never relate to it in the same way. I’d say it’s one of the hardest aspects of the disease. Cancer patients and survivors can go to support groups, but we can’t have that face-to-face connection. 

Though I’ve struggled physically with CF, the worst part has been the mental burden. These days it continues to impact me more than the physical side. But clinical psychologists have been great. People are recognising the mental health side of CF more and more, and having that help is invaluable. I’ve had therapy since I was a child but to have a psychologist as part of my CF team is incredible – there are no huge waiting lists like with the NHS, I can call them whenever I need them.

I always wonder if I got targeted with bullying because I was different. I’ve always struggled with friendships and am on the NHS waiting list for an autism diagnosis which could explain it, but it might have been my CF. I used to have to go to the office to take my medication, so it was obvious I was different, and those kids remembered that. I’ve always struggled with relationships though, so could be a mix of both.

I’ve done a lot of fundraising and raising awareness and have taken my early insecurities about CF to help others and help myself. Instead, I try to be proud of my CF and make it something I manage to overcome daily.

Becoming a mother

Me and my partner Tom met online when I was at university. I’ve always been very upfront about my health, and within the first few weeks of us knowing each other, I did a news segment about modulators on TV, and he saw that. I do remember it being a big part of our conversation on our first date - he’s very understanding. It must be different for him because, for me, it’s normal, but until he met me, he wasn’t aware of CF. So, in a way, it’s more of a big thing for him. He’s very supportive and did genetic testing before we decided to start a family to make sure he wasn’t a carrier. 

I had my daughter in January. The birth was fine – I had a c-section but recovered quickly. The pregnancy was more challenging, as I was vomiting the whole 9 months. I had extremely low vitamin b12 during my seventh month which made me feel very ill and I became anemic as well. Then, towards the last few weeks, my breathing got harder, and I was induced and gave birth at 37 weeks. The pump was a massive help with my blood sugars – if I’d been injecting manually, it would have been a nightmare because I would have had to have been taking so much insulin. It was a very difficult nine months, but I’m handling being a mum a lot better than I thought.

She’s four months old now, and she’s a very good baby. She’s been sleeping through the night and is teething now, but it’s been amazing to see her develop. Having a baby was not something me or my family thought I’d be able to do. Not just because of the physical act of having children, but until Kaftrio, I didn’t want to have kids and leave them soon after. I didn’t want to be selfish. I used to say I didn’t want to have kids but until I started modulators it wasn’t really a possibility for me. So, I know that it’s a very rewarding position to be in. 

If I could visit myself ten years ago, I wouldn’t believe it. My life has changed a lot in the last five to six years, and for the better! My parents and Tom’s parents adore our daughter, and it’s been very rewarding to become a mother.