Living with an invisible condition: Izzie’s story

I was diagnosed with CF when I was six years old, and ever since, I’ve been on a strict four-hour medical routine to help maintain my health. This includes a concoction of over 30 tablets, each with their own debilitating side effects, including sickness, dizziness, fatigue and pain, physiotherapy twice a day, four different inhaled nebs, two inhalers and nasal sprays.

I also suffer from chronic pancreatitis and osteoporosis, which are getting worse as I get older.

This means that often I have to cancel plans and rest in bed as my pain can become so overwhelming that it can hurt to move.

I also heavily rely on those around me daily as my body often struggles to complete simple tasks.

The biggest barriers

And while CF comes with many challenges, the greatest (for me at least) comes from the discrimination I have faced using public services as a young person with CF. There have been many incidents where people have yelled abuse at me for using the disabled toilets or priority seating on the train because, to them, I do not appear to “look ill”.

Some people have even looked me up and down and told me I am a liar because, to them, I look young and ‘healthy’, but they don’t know the pain I feel on the inside.

Just because I might plaster a smile on my face doesn’t mean that, on the inside, I am ok.  I wish people knew that what they see on the outside isn’t a reflection of what’s going on inside. It’s so hard having to justify myself or defend my need to take a break and rest.

Outside perceptions

When it comes to misconceptions, there are many, but the main one is that CF just impacts the lungs. My pancreatitis is the hardest part of my condition, as it causes me unbearable pain almost daily.

Talking about CF can be hard, but sharing and being open is better than hiding it. People can be ignorant and say the wrong thing without meaning to, which is why it’s important for them to learn.

While it’s not up to us to teach others what CF is, it can be helpful to start a conversation about it.

But don’t feel as though you have to go into the personal details of your own CF.

Just learn a basic definition that you can explain to people when needed, or if you don’t feel confident explaining it yourself, you could always direct them to Cystic Fibrosis Trust website.

Some advice

If I could give one piece of advice to a young person with CF today, it would be to stand up for yourself.

You know your body better than anyone else.

You know your capabilities and limits, so don’t allow anyone to tell you what you can or can’t do regarding your health.

My younger self

If I could go back in time, I would tell my younger self to relax. I would often get very stressed about keeping up with all my medications, doing all my schoolwork and maintaining a busy social life.

I wish I had been more open with my CF team about my struggles in managing my medicine. If I had gone to them for support, it would have helped me feel less alone.

The importance of awareness

Raising awareness of CF is crucial not only to educate the public on what the condition is but also to help raise vital funds so that new medications can be developed, particularly for the people with CF who are unable to have Kaftrio.

A life unlimited for me means a life without discrimination and a life in which CF doesn’t take centre stage.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. Over 10,800 people in the UK are living with cystic fibrosis (CF), but the condition is still widely misunderstood.

Cystic fibrosis is an invisible condition, you can’t see what it does to the body. But it’s not invisible to the thousands of people whose lives are dominated by it every single day.

You’ll never see the hours of coughing, the mountain of pills or the trips to the hospital. You’ll just see a person with an invisible condition, trying to live a life unlimited.

The challenge of living with CF is invisible. Except to the ones who live it.