‘You don’t look sick’: How to quickly explain CF in difficult situations

This is part of a series about living with invisible illness for Cystic Fibrosis Awareness Month. Go here to read more.

You never know when you’re going to need to explain cystic fibrosis (CF) on the fly. Maybe someone is giving you a weird look while you’re in the middle of a coughing fit, or maybe you’re getting checked into an emergency room and you’re nervous that infection protocols won’t be obeyed. 

The following are my go-to explanations of CF.

In an emergency room or speaking to paramedics: “I have cystic fibrosis, a rare lung disease that also affects my digestive system and sinuses. Please contact my pulmonologist and check my chart because I’m taking a lot of medications. And can I also get a room separated from people with respiratory symptoms?”

Between potential medication interactions and the superbugs that make emergency rooms their home, there’s plenty that can go wrong in an emergency room visit. It’s important to set expectations of your care upfront, and get to your pulmonologist as quickly as possible.

After a coughing fit or when blowing your nose: “Don’t worry, it’s not contagious! It’s just from a genetic lung-and-sinus disease I was born with.” 

I’ve found that the word “genetic” sets people at ease. Not many have in mind the idea that someone is born with a contagious disease.

When given glares upon using a handicap pass: “I have a lung disease that isn’t always noticeable, but it gets really hard to breathe sometimes, and that makes even walking difficult. I have this pass for my safety.” 

Many don’t realize that handicap parking passes aren’t only for people who use mobility aids. You can save someone else trouble by pointing out that not every disability is obvious.

When people comment on how thin you are: “I’d love to gain weight! I’d have more energy. But my disease hurts my body’s ability to absorb nutrients, and lung infections burn a lot of calories.”

Many forget that food and weight are tied to energy. Gently remind them that people’s weights aren’t always their choice, and that you’re fighting an invisible illness that demands a heavy toll.

In a workplace or similar professional setting: “I have cystic fibrosis, a noncontagious lung disease that can affect my sinuses, digestion, and energy. I’m usually careful in honoring my body’s needs so the disease won’t get in the way of work, but life happens, and I do need accommodations to protect the work quality I expect of myself.”

I like to emphasize my work quality to ensure the listener understands it’s not about me trying to get out of work, but that I’m trying to ensure I deliver on my commitments. I take pride in my work and want people to know that I’d like to continue to be proud of that work.

In social situations (such as with friends, family, or curious strangers): “Think of it being that my body makes mucus incorrectly. We all have mucus in our body, and in my case, the disease thickens the mucus, which clogs my lungs and digestive system. That sets off a domino effect of health problems.”

Not many realize that all people have mucus in their bodies, even when they’re not sick. I correct this misunderstanding because it makes me feel less embarrassed about the reality of my disease.

When setting boundaries (if someone is being dismissive or insensitive, for example): “Cystic fibrosis is a serious disease that makes it hard to breathe. And with less oxygen, I have less energy. I don’t always have the energy to explain it in detail, but I do appreciate your understanding.”

Not everyone remembers that we are battling an invisible illness 24/7. Connect the dots by reminding people that you’re dealing with way less energy than them. If they’re resistant to that, remind them of a time they were sick and felt they couldn’t do what they wanted.

Other times you need to be brief: “Cystic fibrosis is genetic, so I was born with it. It causes lots of noncontagious lung infections, so I might cough more frequently or get tired more easily. It also makes it hard for me to gain weight.”

I turn to this explanation when people want to understand the full extent of my disease, but I’m too tired to talk for long.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.