For the record, my website is not the only blog that I publish on!!
I wrote this article for the national cystic fibrosis blog, so you may have already read it.
But in any case, I wanted to share this blog post with you because it captures just how I feel about making new friends and letting them into my CF world!
When you spend the majority of your life in the same town with the same friends and family, go to the same school, and spend your life being the same you, the same story gets passed around and — eventually — you find that it’s almost unnecessary to tell your cystic fibrosis story because most people already know, or they know someone who does.
But what happens when you find yourself in new surroundings, with new people, new personalities, new opportunities, and no one even knows your middle name? It can be such a breath of fresh air, but it can also be intimidating and overwhelming knowing that you have to start all over.
I would love to share with you some of the things I have learned in the last eight months about how to approach the “tomato in the room” (yeah, yeah, I know that’s not the phrase … but I’m watching “Parenthood” and that’s Hank’s phrase, and I sort of dig it) when you are living in a new city. And, that tomato in the room is, “What is CF?” or “Why are you so sick/what’s wrong?”
One thing I have picked up is to not feel pressured to tell my CF story right off the bat. You know the cliché, “Actions speak louder than words?” Well, in the case of CF, the actions will come sooner rather than later and that opens the door to start telling your story — the moment you have a coughing fit, and it sounds like you’ve been smoking three packs a day for the last 10 years; or the moment you have to cancel plans at the last second with that person who was so nice to invite you out in the first place when they barely know you because you literally can’t even sit up; or even when you just don’t show up to an event and your husband has to go alone, and someone asks where you are. These are perfect scenarios to explain your situation and let your new friends into your world a little bit.
I have learned to be open to questions and let people know that I welcome them. You can only explain the details of CF in a short amount of time so well. When you do start the explanation process, be up front about it and tell them that it is a long story, and everyone’s story is different. You’d love to answer all their questions (because you’re a walking encyclopedia of cystic fibrosis … DUH). The more open you are with answering questions and sharing your story, the more people will get to know you and — maybe — even find some common ground with you.
Another thing I have learned is to just be light-hearted with your CF. Never diminish the significance and detriment of the disease. Just let them know that while you deal with this terror day-in and day-out, YOU’RE STILL A HUMAN BEING. And, you still love to live life to the fullest and have fun!
Beware that people will look at you crazy when you tell them that you have multiple hospital stays a year and do IV antibiotics at home for weeks at a time. But, when they hear that you get to order Uber Eats and stuff your face with a whole pizza’s worth of calories, it tends to make them smile and laugh with you (and don’t forget to introduce your IV pole and PICC line by name … yeah, I mean you Dazzle and Linus).
If you tell your story in misery, you will — most likely — live your CF life in misery, and you’re letting CF win. So, DON’T LET CF WIN. Let people know that you’re fighting for your life and kicking CF in the rear-end while you do it. Let them know that you’re a warrior. You’re a CF hero and nothing will break you. It may wound you and land you in the hospital for a week or so, or send you home on an IV for a month, but it won’t break you. You are resilient.
Every person has a story to tell, and every person has to start somewhere. Don’t be afraid to tell your CF story. You may have CF, but the world needs to know that CF doesn’t have you.
