Being a Patient AND a Person is Impossible

“You should write about how it’s impossible to have a life and be sick at the same time.” This is what my partner said this morning, after asking him what the heck my column should be about this week.

Honestly, as a mother of two girls, ages 11 and almost 8, writing this bit of literary brilliance [subliminal messaging] was multitasking enough. The amount of times I said, “If I could just write one word, then I’ll be able to get your dinner!” is likely in the multi-mil-thousands. My superior math skills and lack of patience aside, dealing with chronic illness is nothing if not defined by multitasking.

For many, this statement is so obvious that it begs a different synonym entirely. (Word to the wise: don’t Google “less obvious words for obvious” unless you want to feel like a Grade A Oxy-Moron.) Balancing both the life of a chronic patient and the life of a thriving citizen of humanity (or even just the Cheetos and Netflix garden variety of humanity) can feel insufferable.

On any given day, I attempt to be three people at the exact same time: The compliant patient who listens to her physicians and never ruffles any feathers, the whole and complete being who understands her identity and worth far outside of the hospital walls, and the thriving Cheetos & Netflix co-insurer who cares for her family, earns money, pays bills, and sometimes dances.

The Cystic Fibrosis News Today forums are a place to connect with other patients, share tips and talk about the latest research. Join today!

On the former subject, I have not always been perfect. In fact, a couple of years ago I wrote openly about ordering a supplement to treat a symptom on my own, because I didn’t want to stress my husband or bother with yet another doctor’s appointment. Not only did this have adverse effects I didn’t connect until later, but it also messed with my sense of trust in the system.

Did I learn to stop trying to resolve issues myself or take matters into my own hands? Oh, hell yes! But, can I still empathize with why someone would make the same mistake, when faced with constant medical regimes, refill routines and surgical rotations? Also, yes.

We need doctors and staff who understand the psychology of dealing with medical management of this magnitude, for better and worse. Thankfully for me, my worse has been only once, but that still doesn’t excuse it. Neither does my desire to be the perfect low-maintenance patient ever completely resolve. (I was a Professional Brown-noser in college, too.) I want to listen, do well, and succeed at all things in life, so when that thing never really resolves, and there is no “right” way to handle it … it is hard to navigate.

Living “in the grey” (or living with any long-term condition) often can leave you emotionally detached from anything and everything to do with medical science. A doctor tells me to take Creon instead of ZenPep? I shut up and do it. A doctor says it’s likely I have primary ciliary dyskinesia instead of CF, or CF instead of something else, or something else instead of something else? I shut up and nod my head.

For the most part, every single aspect of my daily routine and vernacular has been determined by a doctor of some sort (even when they disagree with each other), and I just ride the wave trying to control the only thing I can — my identity.

Our identity is indefinitely entangled in our health maintenance, and the resounding resentment is something that makes me a little too Sour Patch Kid most days of the week (sour + sweet = terrible pun). By morning, I brew coffee, down pills, cough up my guts, tell my kids to stop fighting, and check business emails for my professional dance nonprofit, Company 360. By afternoon, I might be teaching dance for upwards of 10 hours without breaks, requiring secret Tobi puffs, tubes of Arnica gel, and torrents of tears to the side.

I have to be prepared for a Plan B at all times (so many inappropriate jokes, so little time). Is something going to go wrong with my body, leading to last-second appointments? Is my stomach going to be releasing too much or too little of itself on busy mornings? As a dancer, director and mother, certain weeks just don’t care about my health issues. For lack of any other way to phrase it: I just have to hold in the vomit, swallow the mucus and suck it the heck up.

Thankfully, I almost always can remind myself why it is, in fact, worth it. Is two hours of dancing worth discreetly cleaning blood off my leotard from G and J pains? Yup. (Haven’t you seen Black Swan? We are psychotic.) Is an extra-long day with my daughters worth starting feeds a little later that night, or skipping a third nebulizer treatment? Normally, yeah (when they’re not fighting). Still, finding a way to balance my goals as a human being WITH a life, with the absolutes of being a patient who needs to live, are far from perfect.

I wish I were a better patient, though I certainly have learned from my mistakes. I now know to ask for help more, stay open always, and stop trying to fix everything myself.

I wish I was more patient, in general. As a parent, a partner, a person.

I wish I was more at all times. But most of the time? I’m just not.

I still don’t know exactly how to tango between the many needs of life, but luckily, every single day presents a new opportunity to raise two humans at once, be three things at once, do hundreds of treatments at once … and continue to suck at math.

***

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.