When I was little, I didn’t know how to talk about my cystic fibrosis. To be honest, I didn’t even know what CF was. I didn’t know why I took pills or why my parents hit me all the time (postural drainage therapy– relax folks). I just thought I had a bad cold that I could not shake.
Over the years, I’ve come up with some tips on how to tell people about your CF.
5 Tips on How to Tell People You Have Cystic Fibrosis (CF)
1. Be ready to educated. Make sure you know enough about CF to contribute to a conversation. Not just what it is but why you need to take so many medicines and do so many treatments daily. This is likely the first time they have ever heard of cystic fibrosis. You can also use this time to ensure them that cystic fibrosis is not contagious.
2. Be positive. Don’t say “I have a disease that will probably kill me.” Kind of turns the room into a quiet place. Say, ”I have a genetic disease that affects my breathing, digestion, etc. I live my life to the fullest and have found a way to make a difference. Then you can talk more about you can take 10 pills at the same time. Beat that!” In other words, be positive and keep a GOOD sense of humor. It lightens up the room.
3. I don’t usually reveal my CF the first time I meet someone unless they already know about it. As I’ve gotten older, people have known as I have a decent presence on social media and local media. I recommend waiting for a good opportunity for a segue. For example, “Please pass the ketchup. Oh, I have cystic fibrosis,” doesn’t work. However maybe you see someone coughing a lot next to you. You can then explain to the person you are with, why you need to move because you can’t afford to get sick because of your chronic lung disease. If the person is interested in learning more, they will ask.
4. Don’t have regrets. If you bring it up and people don’t want to hang out with you because of it, don’t take it the wrong way. CF is part of who we are whether we like it or not. Because of this disease, not everyone is going to want to be our friends. HOWEVER, you will meet a special group of people who will and you should treasure them. At the same time, don’t settle for relationships or friendships. People are lucky to have you in their lives with or without CF.
5. Tell a person if they google CF that it looks a lot scarier than it really is. Explain all the progress being made. Tell them how you’re feeling and your expectations. It’s a lot better to be open than holding the secret for a long time, and having them find out on their own.
6. Make sure you are ready! It is okay to wait, if you don’t want to tell someone about your CF then don’t. It is your health and your business so make sure you are comfortable with who you tell and when.
7. Help them understand how cystic fibrosis impacts your life. Always running late because of
Live your dreams and love your life!
Andy
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