6 Things I Wish People Knew About CF

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.

6 Things I Wish People Knew About CF


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 CF. 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
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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.

6 Things I Wish People Knew About CF


2) IT  DOESN'T  JUST  EFFECT  ME  PHYSICALLY
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Mentally, CF 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
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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. 

6 Things I Wish People Knew About CF


4) MY  OUTLOOK  ON  LIFE  WILL  BE  DIFFERENT  TO  YOURS
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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
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This is the sort of thing I am more than happy to give someone my middle finger when they assume that CF 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
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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, CF will be behind it in some way. Little b****rd.   

6 Things I Wish People Knew About CF

There are other things that I wish people knew about CF, but these are the main points. If there is anything you would like to know, just ask in the comments below! 

48 comments
  1. I really like your CF themed post, I feel like it helps me get to know you even better. This was a really great post to read and also a hard one. I hate to think that in the past I've been ignorant and not been kind to people with other invisible illnesses.
    As a blogger and a friend, you help me learn a lot, so thank you!

    I love how honest you are and your recent post about your life goals and your outlook made me very reflectful!

    Rosie

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    1. Thank you Rosie, I'm glad you liked this post!
      Listen lovely, it's so good that you are being honest with yourself and to me to about what you have done in the past in regards to how you saw invisible illnesses, I really do appreciate that, and I'm sure others will too!
      I think my outlook on life is quite different to my friends and I like that!

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  2. It's true, you shouldn't assume that someone is fine just because you can't see any visible signs of illness. Thank you for sharing this, Lucy, I've learned quite a bit today x

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    1. I know lovely, I wish people would realise that not all disabilities are visible!
      I'm happy that you learned a lot from this post Lisa! x

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  3. I'm p-s asthmatic and can totally relate to the irritation that comes with people comparing them, they couldn't be more different! Great post, it's so insightful to learn more about CF.

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    1. It can be irritating, both are awful illnesses but completely different from each other!

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  4. I honestly never knew what CF WAS!! until this post, such a great informative blog post I appreciate you sharing this love !
    - shy - https://www.shyyshianne.com/

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  5. Hi Lucy,

    Thank you for the CF lesson. I must confess that I was among the ignorant masses and the extent of my knowledge before reading this was "CF? Yes, that's a build-up of mucus in the lungs isn't it?" Thanks for expanding my knowledge.

    You said that it was OK to ask questions so ... Does diet have any impact on CF on a day-to-day basis? For example, do dairy foods make it better, worse, no difference?

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    1. Yes you're right Richie! I'm glad that I've expanded your knowledge though!
      In terms of diet, it has changed quite a bit in the last few months and here's why! Before I started this new miracle drug called Kaftrio (the next best thing to a cure) my dietician has always told me to eat a high calorie diet as people with CF struggle to gain and maintain weight because of our pancreas not working properly. But after starting Kaftrio, it has made me gain weight, so my whole diet philosophy has changed quite dramatically! In terms of what foods I can and can't eat, there's no particular type of food that would make things better or worse!

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  6. I don't know much about CF so this was super helpful and informative for me to read. Thanks so much for sharing!

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    1. I'm glad you found this informative Charity!

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  7. It is so important and great that you share a post like this to educate and inform others. I have studied psychology and previously was a teacher for a few years to pre-schoolers so I do know about CF (just obviously not from a personal experience) and we did have a lovely little girl in my class that had CF. I also agree that some people seem to think that having a disability means it should be obvious or something you can physically see, which is not the case for a few disabilities! Thank you for sharing xx

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    1. Thank you for reading Gemma!
      I wish people would understand that not all disabilities are visible and that it doesn't necessary have to be an obvious feature (if that makes sense!) xx

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  8. To be honest I don’t know an awful lot about CF, and I don’t know anyone who has it, so this post has given me abit of an insight. Thankyou for sharing x

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    1. I'm happy that this post has given you more of an insight into CF Ellie! x

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  9. I didn't know CF affected other parts of the body, I thought it was just a lung condition, so I've just learnt something new. Invisible disabilities often add to the mental health strains that accompany having a chronic illness, all because society seems to have a hard time accepting something they can't see

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    1. Yeah it effects a lot of my body!
      That's an interesting way of looking at it, I never thought of it like that! I think a majority of society have a hard time of accepting something they can't see

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  10. I find it great that you're so open to spreading awareness from a more real POV rather than medically. I didn't know much about it until a book I read was based around CF so I've read more on it since then xx

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    1. Was the book Five Feet Apart by any chance?!
      I don't like to discuss medically related stuff as I find that quite personal in a way, I'd rather look at things from my POV and talk more realistically about things! xx

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  11. Thank you for being so open and spreading awareness on CF! I know a lot of people will find this post very helpful xx

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  12. It must be so frustrating having to explain over and over again, it's so annoying when people make assumptions based on nothing/ very limited information. It's not the same, but I get SO annoyed when people tell me I'm too skinny to have diabetes, or ask me 'were you fat before??' or ask how much weight I've lost (none, actually) because they know nothing about type 1 and associate the word with what they've heard on the news about obesity. I can't even imagine how annoying that gets with something the scale of CF. It's amazing that you're so open about it and don't mind people asking questions though, I definitely think there's a benefit to learning about something first hand rather than a search engine x

    Sophie
    www.glowsteady.co.uk

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    1. It's so frustrating when people make assumptions, the fact that people say that you're too skinny to be a diabetic is awful, some people have got a nerve! People are so quick to make assumptions and more often or not, they're the wrong kind!
      I really don't mind answering people's questions, I would rather tell people the right answers rather than make the wrong assumptions! You're right lovely, it's better to hear it from the horse's mouth than a search engine! x

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  13. Such an informative post! This has definitely enlightened me xx

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    1. Thanks for reading Caroline, I hope you learnt something from it! xx

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  14. This is so interesting & informative Lucy, thanks so much for sharing. I've learnt so much about CF from you. It must be frustrating when people make assumptions about CF when they know very little about it. I imagine the asthma thing is the worst. My husband has asthma & it's the most different thing! I know I've asked you things about CF in the past before and you've always been so welcoming and open. You're definitely one to look up to for others with CF.

    Claire.X
    www.clairemac.co.uk

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    1. Thank you Claire!
      The asthma comparison and it's such an insult to asthmatics!
      Thank you so much for your kind words lovely, they mean so much! x

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  15. My cousin has CF and I know just how debilitating it can be at times. I hope you are doing well sweetie!

    Danielle | thereluctantblogger.co.uk

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    1. I hope your cousin is doing ok lovely! Send him/her my love! I'm doing good thank you x

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  16. This is such an informative post. I have to admit I don't know that much about CF but I have learnt so much from you and from this post.

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    1. I'm glad to hear that you've learned a lot Sarah!

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  17. I feel like I know a bit more about this now, Lucy, which is great as I would probably be one of those annoying people asking about what CF is! But I am happy I got to read about it and from you of all the people!

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    1. I hope you've learnt a little about CF now Simona! x

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  18. Thank you for being so open and honest in this post. Honestly, I feel ashamed with how little I know about CF, but I have learnt so much from your posts! It must be really frustrating what you have to go through, especially when people make assumptions. I hope you're doing really well and keeping safe, Em x

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    1. I shouldn't tell you how to feel but honestly Em, don't feel ashamed of not knowing much about CF, a lot of people are in the same boat!
      I hate it when people make assumptions, I would rather people ask me so I can give them the right answers then!
      Thank you lovely, I'm doing well at the moment (touch wood!), I hope you are too! x

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  19. Education is so important, thank you so much for sharing more information about it!

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    1. You're right Amie, education is so important with things like this!

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  20. Thanks for sharing, it's certainly good to know a lot more of what illness/disabities people have before you judge them, I have said that to myself. I have learnted a lot from your post, so important to educate people :)

    Nic | Nic's Adventures & Bakes

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    1. It's so important to let people know that not all disabilities are visible and it's important not to judge straight away!

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  21. I don’t know much about CF but I found this post really interesting. People are always afraid to ask questions in case they upset someone. It’s always important to ask.

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    1. Absolutely lovely, I would much rather people ask than assume!

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  22. I love that you are raising more awareness for CF. As someone who has a hidden disability, it can be really frustrating when people expect proof.

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    1. Oh I hate people who make assumptions and expect you to provide proof of your disability, it's just wrong!

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  23. Thank you for sharing your story on CF and giving more detail about it. Its awful when people make assumptions, I wish they would take action and learn on their own time. This has been very insightful, especially in getting to know a bit more about you.

    Jordanne x

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    1. It is hard when people make assumptions and it gets annoying after a while, I just wish people would ask rather than presume anything! x

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  24. I love that you raise awareness about CF. I remember learning about it in school, but not from someone who has to live with it. With your point about the disabled parking spot, those types of people who judge and assume because they can't see it, it isn't a diability really infuriate me! Great post!
    Aimsy xoxo
    Aimsy’s Antics

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    1. Those sort of people infuriate me so much, it's so bad how ignorant people are these days! x

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