How do I know if I’m ‘sick-sick’ when I’m sick every day?

This is my brain’s survival mode? Here I am, in the ambulance, with machines and wires and meds, being rushed to an ICU, and I whip out my phone to take a pic! It’s crazy to see this image and realize I had no comprehension of the situation's seriousness. I was definitely in a form of shock.

Living with Kartagener’s Syndrome and Primary Ciliary Dyskinesia, two rare progressive diseases, has been a lifelong journey filled with unexpected challenges. One might assume I'd be more prepared for these surprises, but that’s far from the truth.

Two years ago, I found myself in the ICU for a three-week stay. Prior to this, I had been feeling more unwell than usual. For someone like me, who is sick every day, it’s hard to discern when I’m seriously ill or just having my typical sick day with daily pneumonia. In my case, even a typical “off day” can knock me off my feet, complicating the ability to gauge when something is truly wrong.

It all started with a visit to my then-primary care doctor due to feeling unusually ill. She diagnosed me with a urinary tract infection, but I knew that wasn’t the case. I felt something else was off, a sense that proved to be more accurate than I anticipated. Eric took me home instead of going directly to the pharmacy for antibiotics and helped me into bed. But shortly after he left, I forced myself to get up and wait for him by the front door. When he arrived, I told him I felt like I was dying inside.

We rushed to our local hospital, where I was immediately brought to the ER. I was in full systemic sepsis. An IV and medications were administered, and a CT scan revealed an abscess in my lungs. In probable shock, I still couldn’t fully grasp the severity of my condition. They worked to stabilize me for an ambulance transfer to a trauma center an hour away. Despite the gravity of the situation, I joked with the EMT, using humor as I usually do as a coping mechanism. And a few hits of morphine to dull the pain probably helped as well.

In the ICU, the seriousness of my condition sank in. They managed to get the sepsis under control and slowly stabilized my vitals. The next challenge was fighting the lung abscess. As someone with a chronic illness, I believed I was attuned to my body’s signals, often boasting about it to my pulmonologists. This incident, however, shattered that confidence. Although I sensed something was wrong at the doctor’s office, I should have insisted they call the hospital instead so they could run some tests.

Reflecting on that time, I realize the severity of my symptoms. I had a high fever and was vomiting, yet all I wanted was to get home and rest. Hearing the ER doctor’s words that if I had stayed in bed that night, I wouldn’t have woken up, made me comprehend how close I came to losing my life.

I underwent lung surgery, and the recovery was arduous, taking a year to regain some semblance of normalcy. Even now, I'm not sure I’m fully recovered, having been hospitalized three more times since then. My second year has been about adapting to a new normal and acknowledging I can’t do what I used to.

Today, I’d like to say I know my own body and my disease better than anyone else. However, that life-threatening event shook my confidence. Lately, I’ve been feeling extremely tired, battling utter exhaustion. It’s challenging to discern whether this fatigue is due to my busy schedule and numerous projects or if I’m becoming seriously ill again. For someone like me, distinguishing between normal and "SICK sick" is a constant struggle, especially since my baseline health would be alarming for a healthy person.

So that’s my answer to people who always say, “How did you not know you had an abscess in your lung AND that you were septic?”