The Experience of Living in Denial, From Soda to a Diagnosis
My aunt laughed as she set the beverage down on the coffee table. “Go ahead,” she coaxed, “try it!”
I stared at the clear plastic cup in front of me. The liquid looked like my favorite soda (or pop, depending on what region of the U.S. you’re from), but according to my aunt, a brown cola enthusiast, it was going to taste nothing like it.
After a vague Super Bowl commercial in 1992, a “revolutionary” new product called Crystal Pepsi debuted. While this particular soda brand purported to be the healthier alternative to its predecessor, it was still flavored to taste as close to the original cola as possible.
But 11-year-old me was utterly unconvinced. Like most people, I’d already decided that clear soda meant a citrus taste was imminent. In my sixth-grade mind, drink color equaled flavor.
As soon as I took my first sip, time seemed to pause. My taste buds registered the taste of my aunt’s favorite beverage, but my eyes “told” my brain it was impossible.
I refused to finish the cup. Because I had predetermined how this taste test was supposed to go, I never bought into the ’90s marketing brilliance of the drink.
Years later, I often joked about my brain completely denying what I was actually tasting. The commercial, bottle, and flavor told me precisely what it was, but I couldn’t accept it over the tiny detail of it being the wrong color.
By 2021, my husband and I awaited blood test results for our oldest daughter to confirm her hereditary angioedema diagnosis (HAE) further. Unbeknownst to us, Ladybug (a nickname since birth) started showing signs of HAE as young as 5. However, through misunderstandings and misdiagnoses, it had taken six years to get to what I considered this defining test.
Ladybug exhibited all the HAE symptoms: tingling and swelling hands, feet, and face, painful stomach pain and gastrointestinal issues, and even nonitchy skin rashes. All signs pointed to the proof that she had this chronic illness. Now, all her doctor wanted was the results of her blood test to give us all the information we needed.
When her results came back with a normal C1-inhibitor, I was devastatingly excited. Of course, I assumed this was proof that she didn’t have the disease, but that meant we were right back where we started.
However, Ladybug’s doctor and I didn’t see eye to eye on my reasoning.
“There are three types of HAE,” her doctor told us during the virtual appointment. “Ladybug has type 3: hereditary angioedema with normal C1-inhibitor.”
“I don’t think she has it,” I argued. “If she did, the blood test would’ve told us something.”
The doctor’s patience was remarkable. The same little girl who refused to believe she was drinking Pepsi because of its color had grown into a mom denying her daughter’s diagnosis because the blood test was normal. Both rejections stemmed from the liquid inside a clearly labeled package.
“Ms. Jones,” her doctor stated as gently as possible, “if Ladybug didn’t have it, she wouldn’t respond to the emergency treatment medications.”
He was right. Medications specific for HAE patients like Berinert controlled all of Ladybug’s flares.
I was terrified of the disease when the doctor introduced the possibility of HAE. I convinced myself that with a negative blood test, we wouldn’t have to deal with everything that comes with this chronic illness.
But once I accepted that this was our journey, we got access to excellent care, advocacy, and other families going through exactly what we were going through.
Excellent medical care, support, and understanding are some of the best things to occur when faced with a difficult diagnosis, even if the initial news is hard to swallow.
Note: Angioedema News 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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