Disclosing CF to Someone New Doesn't Have to Be So Complicated

Have you ever met someone new, and instantly wondered how you would tell them you have cystic fibrosis?

It’s the same plotline each time: the excitement of a new relationship is exhilarating--a coworker you clicked with, a love interest with a possible future, or a friendship with so much potential you’re on the verge of scaring them away--but in the back of your mind there’s a quiet warning signal.

It doesn’t matter if you just met them, you know that at some point down the road you will have to share your whole truth about living with a serious chronic illness. Ultimately, you worry about how they will react to your news. Some people respond acceptingly, and others not so much. There’s just no way of knowing how it will play out.

How do you share about CF?

Because there is no universal script when it comes to sharing about CF, it can be incredibly awkward to navigate these situations. The likely blunders and possible pitfalls are emotionally terrifying and socially confusing. Sometimes I feel like I get it right, but often I wonder if I take the wrong approach when sharing about my CF initially.

I have so many questions: Is there a perfect time to share about CF with someone new you meet? What should you say? How much should information should you share? Finally, what should you do if they react poorly? I’m not sure there is a right way. However, there are some tips to help you share in a way that best represents you!

Sharing about your CF is up to you

Alas since we sovereignly navigate this crazy experience, the best way to approach sharing about CF is 100 percent dependent on your personality. (That’s not very comforting, is it?) The beauty about telling your own CF narrative is that YOU are in charge of how, when, and what type of information is relayed to each new person. There is power in being the story-teller. Choose a method that is most comfortable for you!

The open book sharer

Maybe you are the open book type, someone who is confident coming forward with personal information and experiences? If so, awesome! Those future relationships are lucky to have a person so forthcoming and honest with their story. You are probably great at raising awareness and advocating for the CF community as well!

The reserved type

Possibly, being so open about CF at the start of a relationship is not your jam. It makes you uncomfortable and feels too vulnerable. That’s is perfectly OK too! Some people prefer to wait until they know the relationship is lasting and dare-I-say worthy of such insight. You are probably the type of person that has a small but trusted support group who completely embrace your journey with CF.

Somewhere in between

Or you could be more like me and exist somewhere in the middle. My general rule: CF is never the first thing I say about myself, but never the last. I prefer to wait until it comes up organically in conversations before I share. Works well for me! However, whatever timing makes you feel the most secure sharing your story is the right choice for you.

Know your audience

I think a good perspective to keep in mind when sharing about CF to someone new is to remember who that “someone” is. Each person’s role in your life will dictate the language and detail you use. The way you share about CF to a professional contact is obviously very different than the way you would a hot first date.

These relationships will not all be equal as they progress, and the same is true with how much you choose to share depending on that person's role. Personally, I like to categorize people into two categories: “need to know” and “want to know”. For example, a university professor might need to know you have CF in case you are absent and need to make up work. Whereas with a college friend, you would want them to know you are sick because they care about you. Remembering your audience can make telling new people about CF less socially confusing and more straightforward.

Lead by example

I think the biggest worry many people have disclosing CF is the possibility of resulting stigma or pity. Once a stranger becomes aware there is a chance they will view you through a new and slightly different lense than before. Unfortunately, that lense could include negative perceptions that surround chronic illness such as pity, discrimination, or avoidance.¹ It's not right, but it happens! No one wants to be seen in that light when they work hard to live outrageously capable and normal lives.

The best way to show that CF is just a part of your story is to lead by example. Demonstrate how whole, complex, and incredibly capable you are as a person because of CF--not despite CF. All the time, medications, and detail you devote to taking care of yourself is one piece to the puzzle of thriving as your amazing self. You are incredible and so worthy! At the end of the day, if someone decides CF is a reason to not pursue a relationship with you, it says more about their weakness than yours.

How do you approach sharing about CF with someone new you meet? Share your story and any tips you have with our community!