After Years of Battling Cystic Fibrosis, I Officially Became a Medical Mystery Today

Apparently, my genetics are a lot like my emotional baggage: inherently complicated.
Publish date:
September 29, 2015
health, issues, are charities bad?, Lungs

I have lived the last few years as a chronically ill Cystic Fibrosis patient… until today.

My diagnosis process was never cut and dry. Despite growing up thinking that seasonal pneumonia and clubbed thumbnails were routine, I ignored my health for the majority of my youth.

Simply put, my parents weren’t the type of people who went to doctors. They still aren’t, and are kicking it with near perfect health in their 70s. Me, on the other hand? Eventually, I started to realize that strep throat, bronchitis and sinus infections that cause slow, irreversible hearing loss were anything but normal.

Then... my daughter was born. I pushed through my late teens and early twenties, fumbling from one emergency inhaler and Z-pac regimen to the next, without the fiscal ability or partner support to ever truly pursue the dark, mucus-filled elephant in the room.

I tend to be the opposite of the “little boy crying wolf:” If I finally say something is wrong, it has always been wrong.

In America, we like medicine like we like our drive-thrus: instantaneous, effort-free and with a small menu. Fortunately for me, we never had to look any farther than my own organs for evidence.

As soon as I entered the realm of CF care, everything changed for the better. This may seem counterintuitive, since I'd just been diagnosed with a life-threatening genetic disease with no cure, but for me, it meant I finally had the treatment I had needed all those years.

I began complicated regimens of 30+ pills a day, nebulized medications, chest clearance vests, and intravenous antibiotics through my portacath. We added pancreatic enzymes so I could finally start absorbing food, tracked diabetes-related issues with glucose monitors and infused my blood with iron and supplements.

Surgeries, steroids, feeding tubes: My health was worse than ever as I aged, but for the first time in a long time, we had a plan. If we hadn’t had said plan, I sincerely doubt I would be here today.

Maybe it goes without saying, but having a “disease identity” meant that my medical care was better, too. Hospitalizations, surgeries, exacerbations: We all knew what to do, and my body was thankful.

Not long after, however, a few of my specialists started to notice incongruities. Apparently, my genetics are a lot like my emotional baggage: inherently complicated.

While some doctors proposed Primary Ciliary Dyskensia after seeing my sinuses naked during surgery, others argued that CF was correct all along. Instead of just growing passé CF bacteria and that alone, they noticed I was growing other rogue varieties -- literally never documented before in the history of the hospital. (I am salty. I am sick. I am contrarian.)

Despite the initial flip-flopping, my team eventually dropped their dalliance with the gray area of diagnosis, and returned to monochrome medicine. I started at a new CF clinic recently and life has continued as normal. Normal, that is, until today: when my specialist explained, “Something is not quite right.”

"You are complex," she said, “And you will continue to need complex Cystic Fibrosis care.” But, after all of this time, it seems that my genetics are still trying to play Daria to everyone’s Quinn. (It’s OK to fit in sometimes, Gene Pool. It would make you less of a douche-nozzle.)

After confidently living in the "black and white," I am suddenly thrust into the gray again. My body is still a big phlegmy puzzle, only now it has a missing piece that's lost somewhere underneath the couch.

So why am I bothering to tell you guys this? I will continue to be seen as a “complex” CF patient at a CF clinic. My organs, X-rays and tests speak for themselves. My body needs critical care, in the exact same way as my peers who battle the same. I could never say a word about this finding and literally nothing would change. I grow the same bugs, I cough the same cough, I walk the same super-slow, wheezy walk.

Yet, hopefully, I am now part of a larger cause that uncovers other derivatives of a disease that we still don't understand sufficiently. More research needs to be done, more funds raised, more support given… and on that front, I have no intention of ever shutting up.

So why say anything at all? To put it simply, it is to apologize to those of you that simply don’t fit. I can't speed up science for us, but I can be honest. Unlike me, some of you have always had to crawl through the condescending gutters of the gray zone, and for that, I offer my condolences.

Many of you have gone through far worse in your journey with health, and my story is not that original by comparison. Many don't realize they have multiple sclerosis or lupus or idiopathic something-or-other for a decade. Many are ridiculed, shamed, ostracized. Meanwhile, I have lived a reality with supportive doctors beside me, while so many of you have never had the privilege of getting appropriate treatment or respect.

Don't identify by how others identify you. Just be whatever the heck mess of a science project you actually are. I am the same salty CF advocate with tubes and not enough boobs. Except this time, I have the opportunity to help doctors discover other possibilities as well. That’s terrifying, and disheartening, and empowering all at once.

I am a mess… but this mess is how I was made, and I can’t change or control it even if I tried. (Maybe I’d add more on the boob front, but I digress.)

We live in a world that loves labels. Labels for our sexuality, gender, religion, race, politics… And if none of those labels fit perfectly? Than neither do we.

My life goes forward at a CF clinic with CF meds and CF bacteria. Regardless of this clinical reality, it’s still important to state that our world is a spectrum that we don’t always understand. It's a beautiful, colorful, diverse gamut of people and bodies and beauty, and until we can start celebrating that in and of itself, progress (scientific or otherwise) will never happen.

Do I wish my life could be simpler? My body less complicated? My case more cut and dry? Yes. But life isn't simple and it never will be. I hope to fight for awareness no matter how wide the spectrum spreads, or how sick I become. But if someone you know doesn't fit, remember this: I fit for awhile ... until I didn't.

If you know anyone in the middle of a health battle, or a gender transition, or a sexual awakening or any other chapter of life that splinters us out of neatly organized groups, do them a favor and stop caring to which box they belong.

Even if just for a day, take a deep breath (or in my case, a shallow one) and try to live in the gray.