What Is the Hardest Part About Living with Lung Disease?

“What is the hardest part about living with lung disease?” A curious friend recently asked me this question, and my answer could likely far exceed the maximum word count for this column.

Is it the chest pain and wheezing, which often feels like a panic attack that never ends? The embarrassing daily cough, immune to the disgusted stares of bystanders wondering if you’re contagious? Is it coughing up mucus when you don’t have a sputum cup nearby? (I’ll let you fill in the unappetizing blanks on that one.)

Clearly, it’s many things, but if I had to parse it down to one simple thought, it would likely be the fact that it impacts more than just our lungs.

Although many people think a cough is all there is to it, they may not realize that other organs are in flux just as much. And frankly, our cough can change, too. Sometimes it’s dry and nagging, sometimes it’s almost nonexistent, and sometimes it’s a full Death-Eater rattle.

We have just as little control over our hack as we do over our organs, and at least in my case, my esophagus, diaphragm, stomach, colon, sinuses, ears, spine, joints and even liver and pancreas have been affected at one time or another. Thankfully, most of those are currently behaving and thriving. Still, I spend the majority of hospital visits and doctor appointments checking in on a variety of body parts, often the least of which are my lungs.

Many of you may say the fact that we have an “invisible illness” is the hardest part, and to that, I actually sort of disagree. OK, sure — when people make rude faces at your public heaving or don’t understand why you might be walking slowly in the store, it makes me yearn for an epic soliloquy about what’s truly going on inside. (“Four score and seven bronchoscopes ago”….)

Regardless, sometimes it can all feel very visible. My chest is mottled with sizable port and defibrillator scars; my stomach laced with both G and J buttons; the entirety of my flesh tattooed with scars that were not of my choosing or control. In fact, I am actually thankful that it is not more visible. While so many other diseases leave an aesthetic impact far beyond what we complain about (other than the occasional steroid face or Tegaderm decoration), we are able to hide a lot of our somatic struggle from the outside world.

Even with my vapid gratitude, the visibility of illness does not always equate to increased understanding overall. If I have an oxygen cannula on my face, the number of times that well-meaning people have said, “Oh, I get bronchitis a lot, too,” does not lessen. Insensitive comments happen whether sickness is in (or on) someone’s face or not — sometimes even more so.

And even if many don’t realize that grappling with a rare round of pneumonia or the flu isn’t comparable (because they return back to “normal” afterward), we are still left with the knowing that “normal” may never be achieved — no matter the amount of work involved. While we startle at someone else’s cough from an uncovered mouth, or shy away from a friend who subtly remarks they just “got over a cold,” other people will not.

Sure, we know what it feels like to sleep with a needle in our chest for a month, and essentially feel the same after all that consistent effort. We know that someone else’s cold isn’t just our pneumonia; it’s our hospitalization, or lasting drop in lung function, too. But why do we expect someone else to know all of the above without our patient input and kind education? We can’t, and we shouldn’t.

The comparison game is never a pretty one. It makes for ugly sounding sentences (see above) and even uglier personality deficits. However, it is a critical part of the CF and lung-sick psychology.

I am thankful that my illness is not more visible. I am thankful that opportunities exist in everyday life to explain matters like multiple organs being impacted, or why our cough isn’t actually contagious. I am thankful for a great many things — but the isolation that frequently arises from frequent sickness (and those who politely attempt to relate) isn’t one of them.

It doesn’t matter if someone can tell that we are sick or not from the outside. Sometimes it’s just knowing how different we are on the inside that can leave the biggest scar.

So, what is really the hardest part about living with lung disease?

Maybe it’s the way it impacts our soul, making us feel jealous, alone, ostracized, different, critical and bitter. I’m ashamed to admit I’ve felt every one of those things, and I’ve felt them often. Of course, the beautiful part about something that is chronic in nature is that it provides new opportunities to do the opposite every single day.

We may never get a break from our disease, but we do get new chances to let it make us better as people — no matter how much it hurts. To let our struggle shape our compassion, to let our loneliness foster outreach, to be made better by the visible and the invisible.

Let’s stop worrying about who can see our sickness or why they think it only controls our lungs. Instead, let it control the parts of you that really count: your understanding, your empathy, and your soul. Because no matter what organs are impacted, or what a stranger may say, that is the part that no one can ever take away.

That is the you that lasts forever.

Question for you: What do you think is the hardest part about living with lung disease?

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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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.