With my complex medical history, sometimes I just want to be normal

Living with cystic fibrosis (CF) and a double-lung transplant often feels like inhabiting two worlds simultaneously. There’s the extraordinary world, filled with medical miracles, precisely managed medications, and a body that has defied more statistics than I care to count. Then there’s the ordinary world, where sometimes all I want is to just be a normal patient with a simple complaint.

Recently, I visited a local urgent care center for what I knew was routine conjunctivitis, commonly known as pink eye. It’s a straightforward diagnosis, usually resulting in a quick prescription for antibiotic eye drops. But I also asked for a COVID-19 swab, as I had attended a wedding a few days earlier. Two of the times I tested positive for COVID-19 in the past, my only symptom was a sty on my right eye.

In and out, that was the plan. Instead, the appointment evolved into something entirely different.

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In those places, you never see the same doctor twice. This one opened my chart, and his eyes widened. Suddenly, I wasn’t a woman with a mildly irritated eye; I was the patient with a double-lung transplant, an insulin pump, stage 3 kidney disease, a complex medical history, and a laundry list of medications. His curiosity was genuine and kind, but the questions kept coming. Why did I require a transplant? How did the kidney disease develop? What type of diabetes did I have? Each answer spawned another inquiry, his amazement building with every detail.

Meanwhile, I sat masked, immunocompromised, and, at the start of cold and flu season, acutely aware of the coughs and sneezes echoing beyond the curtain of my room. My mind circled back to one persistent thought: “I just need the eye drops!” My patience thinned as I politely tried to redirect our conversation.

Between years of chronic illness and my background in nursing, I understand the medical community’s fascination with my health history. I know most of us with CF often feel like medical experts ourselves. We know our bodies and the idiosyncrasies of our own disease. We’re familiar with medical terminology and know procedure protocols like the back of our hand.

I realize reaching my age with CF and surviving a double-lung transplant is, admittedly, no small feat. But on this day, I felt every ounce of that weight. I felt the burden of being a “medical curiosity.”

When I finally escaped outside, antibiotic eye drops in hand, I sanitized every surface of my car. I cracked the window and drew deep breaths until the tension dissolved. I reminded myself, as I often must, that my life is both a miracle and a blessing. Yet a quiet truth persisted: Sometimes I yearn for the simplicity of being just another patient with a common cold, a sprained ankle, or, yes, an uncomplicated case of pink eye.

I envied the man called back to get his vital signs checked, explaining his vague symptoms of fatigue and a scratchy throat. Or the woman who explained that she had never been there before, as she’d never been sick, but had been experiencing a slight cough for the past two days.

Now, even these complaints could ultimately be a much larger issue, though I sincerely hope that’s not the case. And I don’t know why, on this particular day, I felt and noticed the tension between my gratitude for survival and desire for normalcy. I generally live in appreciation, but I am human, and sometimes I wonder what it’s like to be “normal.”

I see that my daughter does, too, and perhaps that’s the catalyst for me. But that’s a topic for another column.

I know we in the CF community are not “common,” and I’m proud and grateful for every day that proves it. But occasionally, I long for a medical visit where the most remarkable thing about me is absolutely nothing at all. I’m not always a “warrior,” and I’d love to allow myself a day off from that mentality.

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