Living with a chronic illness is like dancing with an unpredictable partner. You never know when the next twist or turn will come, but you learn to adapt and move forward. For me, that partner is Kartagener’s Syndrome, a rare genetic disorder that affects multiple systems in my body, primarily my respiratory system.

Explaining Kartagener’s in a single post feels like trying to capture the vastness of the ocean in a single cup. It’s complex, ever-changing, and deeply personal. There’s no simple way to encapsulate it all. The essence of this blog and website is to convey my experiences living with a chronic, progressive, and rare genetic disease that has been with me since birth. With 57 years of living with it, how do I even begin to summarize and explain what it exactly is?

Living with Kartagener’s means living with uncertainty. It’s 2:57 am and on my nebulizer . I couldn’t sleep. It’s funny because the coughing wakes me up often. But the lack of coughing can also wake me up—my brain asking me “Hey, why aren’t you coughing up the junk?” And tonight I realized I was really dry. This time my brain was right. So I go in the living room to do my nebulizer and I start thinking about the experiences I have had when I wanted to be dryer than the desert. And as I reminisced I said to myself, this daily mucous f’n sucks. It really, really sucks. I’m so sick of it.

So that brings me to today’s subject. Yes, Mucus. I couldn’t put that in the title. And I don’t think I even have to explain why other than it’s disgusting and gross to almost everyone. I even shared with Eric a few minutes ago that I’m about to post something so very personal. He asked me about what. I said, let me tell you the title. He instantly groaned, uarrggghhhh…. and made that ‘gross’ face. And then he asked if I was sure? I said I have to. And he said, I guess you do.

Mucus, the constant companion (and when I say constant, I mean every second of every day. Not just in the mornings or sometimes during the week) of people with Kartagener’s and Primary Ciliary Dyskinesia (PCD), is both a blessing and a curse. While coughing it up may seem repulsive to others, for us, it's a vital sign of our body's ongoing battle against infection.

For me, Kartagener’s has its own set of challenges—other than managing chronic infections—navigating the stigma attached to visible symptoms. I can confidently say that the battle with mucus extends beyond the physical. As a woman with Kartagener’s (and all the other ailments it comes with, which I’ll save for another time), I’ve dealt with the stigma surrounding coughing up mucus in public places, the judgmental glances in restaurants and restrooms, the awkwardness of trying on clothes in a boutique while hearing staff’s comments about me or trying to take notes in a meeting—all these experiences have left emotional scars that run deep.

Let me tell you, saying that dealing with mucus has affected my entire life is putting it mildly. I’m not just frustrated; I’m downright furious! This constant battle never lets up, not for a single moment. It’s like I’m stuck in a never-ending cycle of coughing and spitting with no relief in sight. I never get a break, no matter where I am. And the worst part? Nobody seems to get it in terms of a female’s perspective. Growing up, I felt that boys could just hack up mucus wherever they pleased. Even as an adult, I saw men spitting on sidewalks. But imagine being a young woman trying to navigate the world with this burden. It’s like walking a tightrope of embarrassment and discomfort, with every cough drawing unwanted attention and judgment. I’ve been in women’s restrooms where the mere act of coughing up mucus earns me disgusted stares and whispered insults. So many times, I’ve heard women say to a friend in earshot, “Time to give up those cigarettes” (I’ve never smoked in my life) or “Let's get away from her,” or simply “Gross.” The isolation and misunderstanding I’ve faced as a woman living with this disease has been emotionally burdensome. (I want to add that I know everyone has their own stigma-like experiences, including men. I am speaking from my own experience and from a place of explaining how I felt and/or feel).

There are moments etched in my memory so vividly that each one could fill its own chapter in a book. One such event occurred in my late twenties, during a routine trip to the airport with a family member (I will call FM since I don’t want them to feel any responsibility—to them, it was innocent fun). In my car, I kept a paper cup in the console for discreetly disposing of my mucous. In public or at social gatherings, I had no such luxury and had to swallow it down. But in the privacy of my vehicle, I allowed myself to cough up what I needed to. On this particular day, however, circumstances took an unexpected turn. As we picked up another passenger from the airport and grabbed drinks for the ride home, the cupholders came into play. Unbeknownst to FM, they lifted my mucous cup, and the flimsy paper bottom gave way, unleashing its contents. I won’t go into the gory details (when sitting for hours, it’s not pleasant. I’ll leave it at that), but suffice it to say, it was a mess. To break the tension, FM jokingly burst out, “A cup of Lynne!” While I joined in the laughter outwardly, inside, I felt humiliation. That weekend, and many times in the future, the incident was repeated with amusement by all who heard it. And though I laughed along with the group, a part of me felt exposed and vulnerable. A cup of Lynne. Yep, that’s me. Deep down, I was gutted.

Despite my becoming a master of quick maneuvers, always ready to dodge potential disasters before anyone even notices, there’s still no shortage of embarrassing moments in my repertoire. Which brings me to one of my many work stories. Sometimes, I’d attend meetings absurdly early, snagging a seat by the door just in case I needed to exit swiftly (not to be confused with a ‘swifty’). Other times, I’d arrive fashionably late, hoping the room would be packed, allowing me to stand or crouch inconspicuously by the exit, where I could step out and quickly cough without anyone missing a beat.

On this particular day, I’d say about 24 years ago (wow, that is a long time ago!), I’m seated on the other side of the exit, desperately trying to maintain my composure while a section of my lung threatens to betray me with a torrent of its mucous heading north. I’m barely taking notes because I’m so hyper focused on my breathing and trying to do the impossible: control the muscles around my lungs.

But suddenly, I was in crisis mode. Imagine the alarm on a submarine going off, alerting they’re about to go underwater. A colossal cough erupts, unleashing a deluge of mucus that I can’t possibly swallow into the palm of my hand that I had suctioned to my mouth practically. I heard nothing in that room after that. I desperately searched my pocket for a handful of tissues and pressed them to my mouth and nose as I removed my hand at the same time, which was covered in mucus. I couldn’t swallow it all. My palm went on top of my notepad, hastily concealing the evidence, and then in my lap within seconds. With ninja-like agility—okay, not really—I make my escape, slinking out of the room like a character in a spy thriller (again, not really, but it lightens up my storytelling of a painful experience).

Once safely in the bathroom, I breathe a sigh of relief and bend over in one of the stalls so I’m in a more upside-down position (think of the downward dog in Yoga) and cough up as much as I can with all the strength I have. After the meeting was done, I’d concoct yet another excuse to explain my sudden disappearance, i.e., “I knew I shouldn’t have had that creamy alfredo sauce for lunch.” Anything to divert attention from the truth—that I wasn’t battling a bad case of intestinal issues but rather wrestling with the relentless symptoms of my chronic lung disease.

Throughout my life, I’ve learned to conceal my symptoms, hide the coughs, and suppress the wheezes, all in an attempt to fit in and be accepted as “normal” in every public setting—stores, art galleries, theaters, bars, etc. But hiding and trying to hold down my cough for as long as possible only fueled the inflammation in my lungs, making me more susceptible to infections. And, in turn, damaged my lungs considerably. And I’m suffering the consequences now. It was a vicious cycle of physical discomfort and emotional anguish. I didn’t really understand that twenty-five years ago. Or I didn’t want to. It was a means of emotional survival, which was more important to me then.

That’s another reason why I’ve chosen to share my story openly and unapologetically. Through my blog, website, and social media platforms, I’ve created a space where I can raise awareness, dispel misconceptions, and connect with others who may be facing similar struggles.

Living with Kartagener’s for over five decades has now taught me the importance of speaking up. Or rather, in my case, coughing up, no matter where I am anymore.

BTW, the difference between mucus and mucous: The spelling of Mucus is used to describe the liquid. But you use Mucous when it’s being referred via the organ that secretes it. Here, I’m talking about my lungs. So when I say it’s in my lung, it’s referred to as “mucous.” I might’ve used it incorrectly here, but who is really paying attention to that. LOL.

Oh those annoying tags. But gotta use them to get my blog out there! Comments are below those…