Me – “I have Cystic Fibrosis”
Other person – “What is it?”
Me – “Well…”
You can guess how the conversation goes on from there – me having to explain about the illness that I have had since I was a foetus. A conversation I have had on many occasions and surprised I haven’t recorded just so I don’t need repeat myself over and over.
Don’t get me wrong, it’s not like I don’t want to explain what CF is, it just gets tiring using the same rigmarole every time I get asked what it is. I could be really lazy and point them to Google to find out more. But I do think it sounds better coming from myself and not a search engine. I can give more clarity and more detail on the subject. As somebody who actually has the illness, I have a lot to talk about.
However, sometimes, there are certain things I wish people knew about Cystic Fibrosis. Some things I can’t explain, because most probably, people are not going to experience it or know what it feels like to feel this way.
I will never truly know what it’s like to be healthy, but I just don’t want people to make the wrong assumptions about CF and what my life is like with it.
Here are some things that I wish people know about CF:
1) IT’S OK TO ASK ME QUESTIONS
Don’t be afraid to ask me anything about Cystic Fibrosis. I get the feeling that people are scared to ask questions in case I get upset, drone on and on or they’re too afraid to know what it’s really like. I don’t want you to have any misconceptions about CF, as a lot of the time, there are misconceptions and wrong assumptions made. I’m happy to answer any questions or curiosities you have. If I don’t feel comfortable in asking about it, I’ll let you know! But please, don’t be scared or shy in asking me questions, I’m always happy to answer! I’ve always been open about CF and what it’s like, so I have no issues there.
2) IT DOESN’T JUST EFFECT ME PHYSICALLY
Mentally, Cystic Fibrosis can be challenging too. I wish people could understand that. Any chronic illness warrior will understand this, mentally – having a disability or chronic illness is incredibly challenging mentally and emotionally. It’s tiring, it’s draining, it’s challenging and it’s exhausting on the brain. Not just having to think about what meds or treatments I need to do next, but (pre Kaftrio) thinking about my future prospects, or lack of. I have made it no secret that I have mental health issues and some are caused by CF, some from my own personal life and what I’ve been through. I’d love people to understand that it just doesn’t affect me physically, but mentally too.
3) IT’S AN INVISIBLE DISABILITY
If each dirty look I get when parking in a disabled space was worth money, I’d be a frigging millionaire by now. Let’s face it guys, there are some ignorant people out there. They don’t understand or are oblivious to the fact that not all disabilities are visible. I’ve had people question my illness, received dirty looks and even people argue with me that I’m not disabled. It’s awful that I have to prove myself to these people, it’s wrong and it’s so important for me to raise awareness of that.
4) MY OUTLOOK ON LIFE WILL BE DIFFERENT TO YOURS
I’ve talked about in the past that I feel like I’m falling behind everyone else. Everybody seems to be getting married, engaged, having a baby, buying their first home or getting a dog. My outlook on life has always been different to that of my friends, I want to be able to enjoy my younger years while I still can. I love having that freedom. I’m not even contemplating having children right now. Having CF has limited what I could do before, since I started Kaftrio though, my future plans look even brighter and I kind of just want to enjoy that rather than think about changing nappies etc.
5) IT’S NOT LIKE ASTHMA
This is the sort of thing I am more than happy to give someone my middle finger when they assume that Cystic Fibrosis is exactly like asthma. Two completely different things. Even an asthmatic would find it insulting. Ok, I do use Ventolin for when the weather is too hot or too cold, but still, they’re still two completely different illnesses.
6) IT JUST DOESN’T EFFECT MY LUNGS
Cystic Fibrosis is such a complex illness, there’s not just the lungs to worry about, there’s the digestive system, the sinuses, liver, kidneys, bones, fertility…you name it, if there’s a health problem with me, Cystic Fibrosis will be behind it in some way. Little b****rd.
There are other things that I wish people knew about Cystic Fibrosis, but these are the main points. If there is anything you would like to know, just DM me on any of my socials!
For NHS guidance on Cystic Fibrosis, click here.