Full Disclosure

There comes a time when all cystic fibrosis patients must come out of the closet.

Sept. 23, 2015 | 6 min read
Mara Cray

One of the major quandaries in a CF patient's life is if and when they should tell others about their illness. It's a difficult decision to make -- especially because chronic illness seems to carry a great deal of baggage. People tend to treat their disease like a skeleton in their closet. So there's definitely a learning curve when it comes to telling people about your CF.

There's also a lot of trial and error. I've made the mistake where you tell people who don't really need to know. I've also made the mistake where you don't tell someone, even though you should. For instance, once I was out to dinner with a guy who didn't know that I had CF. Hoping to preserve the illusion of flawless health, I decided to conceal my pancreatic enzymes. I waited for him to turn around, popped the pills in my mouth, and then realized that I had no water to swallow them with. Unable to open my mouth and reveal the pills, I kept smiling like an idiot as I felt the pills melding to the roof of my mouth. The guy was most likely wondering why I wasn't speaking, and also why I kept grinning like someone hopped up on Percocet.

I've also made the mistake where you thought you had told someone about your CF, when you really hadn't. I was talking to a friend on the phone once and actually said, "Sorry, I can't hang out tonight. I'm in the hospital." I, of course, thought nothing of this fact since I was fully aware that I have CF and that hospitalizations are therefore inevitable. But you can probably imagine the confusion and panic that my statement caused.

Turns out, you're going to want to field the CF topic before you casually mention hospital stays. Cherish that nugget of wisdom, cherish it.

Speaking of which, I have compiled a brief list of do's and don'ts -- my best advice for young and/or newly diagnosed patients who may be struggling with sharing their cystic fibrosis:

  1. Don't feel obligated to notify everyone about your illness.
    Not everyone has to know. I've been in situations where I've thought that I surely owed the person the "truth" -- like my CF was a criminal record that must be disclosed during a job interview. This isn't the case. First of all, having CF is not an offense that you have committed against another person. You don't have to apologize for having it, and you don't have to feel guilty just because your CF hasn't come up in conversation. Second of all, if it's time to open up about your CF, you'll have good reasons to do so. Guilt and obligation don't count.
  2. Do develop "dosage maneuvers."
    Early on, I learned to swallow my pancreatic enzymes with ninja-like stealth. I did airway clearance in the privacy of my home. I would shield my inhaler from view during its use, not unlike a drunk hiding a bottle of whiskey in a brown paper bag. Getting sneaky about when and how you do your treatments is worth learning. I'm not saying that you should be trying to hide your CF from everyone, all the time. However, with a disease like CF where the regimen is really intense, it's understandable if you don't want to answer questions every time you take your enzyme or use an inhaler. Being covert about your CF routine is like Clark Kent throwing on a button-down shirt and glasses; it makes for fewer questions and thus less energy output.
  3. Don't recite an entire speech.
    It's human nature to want to thoroughly explain things. However, you don't always have to go into a lengthy spiel when you tell someone about your CF. Sometimes a more thorough explanation will be appreciated, or even necessary -- but oftentimes a brief notification is all you need. Even though your CF is a huge part of your life, other people won't think too much of it if you simply say that you "have this disease called cystic fibrosis."
  4. Do formulate a one-liner.
    As I have said, sometimes people should be made aware of your illness but don't need full disclosure. You'll find a good, short response for when you need to tell someone about your illness. Having a short and sweet explanation saves time and energy and also ensures that people don't read too much into your illness (because I know you're worried about that -- I always am too).

Anyway, these are just tips that have helped me in the past when faced with the "disclosure" issue. I should also say that if you are among those who believe that others will view you differently once they learn about your CF, fear not. You'd be surprised how mild people's reactions are when they hear that you have a disease. Most people don't think too much about it. Others forget almost immediately after you tell them.

To be honest, I have been in situations where people didn't take the news of my CF too well. It doesn't feel good, especially since CF can become such a huge part of who you are. But I've learned that it's best to write these people off the same way they did with you. After all, someone who's going to panic over the mere knowledge of CF probably can't handle the scarier things that the disease has in store. Plus -- and I don't know about you -- but I've never liked squeamish people anyway...

Contrary to popular belief, I am not a wizard who holds all the answers to life's quandaries. So I'd like to know what wisdom you all have to offer on the subject. How do you tell others about your CF?

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Mara has been living with CF for 24 years. She recently earned her master's degree in public relations and hopes to continue her work in health communications. In her spare time, she loves reading, baking, and spoiling her dog, Zoe.

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