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Embracing Contradictions: My Diagnosis Journey

Updated: Apr 18, 2023

Kathryn uses her love for contradictions which lies at the heart of her condition, where she discusses what it is like to be sick and healthy at the same time.


Obsessed, I was obsessed with contradictions. I took refuge in paradoxes. I found solace in nonsense. In my college apartment room, where I spent quite a lot of time, hung an MC Escher. I escaped into the drawing’s twists and turns. The more you look, the less it makes sense. How splendid!


When I found out about poison dart frogs in my ecology class, I was excited for another contradiction! Scientists wanted to understand South American poison dart frogs better, so they captured them and tested them in a new environment. Curiously, the frogs, in their new setting, were no longer poisonous. Why? The frogs’ protective poison, scientists found, was derived from their diet— from eating chemical-containing ants found in one environment, but not the other. So the frogs, I realised, are both poisonous and not poisonous.


I longed for paradoxes, by necessity. You see, I was healthy and I was sick.

My symptoms began during my sophomore year of college. Chest pain, dizziness and fatigue. In the afternoon, I would grow weak and breathless. My walking speed would slow. I struggled to stay alert and upright. The next day, however, I would hop over to the boxing club to work out with friends. My symptoms would fluctuate. But the bad days were growing more frequent.


“Try Xanax” a cardiologist suggested, dismissing my chest paint as anxiety. My doctors and people close to me did not believe I was unwell. The next summer, I shared my health struggles with a supervisor at my summer research job. She was an MD/PHD whom I respected. Asserting that I’m healthy and it’s all in my head, she suggested mental health therapy.


Later my sophomore year, I received a diagnosis of postural orthostatic tachycardia syndrome (POTS), a condition where blood pressure drops and heart rate rises when standing upright. Doctors introduced a series of POTS medications through trial and error. Symptoms improved and worsened. I wanted to believe I was better… but I felt the same.


While I was home from school resting during my junior year, I was trying to find the right POTS treatment, but then my muscles started moving without my consent. I was brushing my hair one evening, when strange, ballistic movements began. Four months later, when I finally saw a movement disorder specialist, the message was the same—it’s all in your head.


For the first time, I had visible symptoms, but visibility failed to make my illness valid.

Entering my senior year, I was healthy according to my doctors. A mild case of POTs and some anemia—nothing sinister. The conflict between my alleged health and my daily suffering left me feeling displaced. What the external world gave me permission to feel directly contradicted my inner experience. Brushing my teeth in the morning wore me out. Fatigue permeated my daily life and forced me to miss classes. I was losing weight, my bones stuck out and I struggled with concentration. One doctor on campus started noticing and was concerned. She detected unstable sodium levels and insisted I leave school when the problem recurred.


A few weeks after leaving school with incompletes in my classes, a visit with a geneticist changed my health and life trajectory. The geneticist diagnosed me with carnitine deficiency, a mitochondrial disorder. She found heart imaging tests from my sophomore year that indicated I have a heart condition—dilated cardiomyopathy. I left the appointment relieved!


Finally, my internal struggle began to align with the outside reality.


The next day, I hunted through medical articles for a prognosis. Relief and anxiety shared space in my mind.


Now, I am a long distance runner living with a heart disease. I have been on beta blockers since age 22 and I take carnitine, an amino acid essential for converting fat to energy, three times a day. My treatment works well! Last year, I ran a marathon, a bucket list goal I formerly abandoned when my symptoms escalated.


I eat chemical-containing ants and I am protected from harm.

While the gap between the body I occupy and the body in my medical records has narrowed, my fondness for contradictions persists.

MRI scanner

Since treatment started, I live a normal young professional life. I work a remote job full time. Sixteen weeks a year, I receive iron infusions because my iron count regularly falls to zero. I go out to explore D.C., I swallow capsule-sized cameras to scope out my gut. I send emails and buy cucumbers and brew coffee and do dishes. I laugh tipsy from wine, I call my mom, I file taxes. I lie in MRI scanners, inhaling at the tone and exhaling at the tone. I am fine and I am not fine.


My heart condition does not appear to be worsening, thankfully. My running, however, is improving. While my health continues to present challenges, it also presents opportunities to develop my voice, advocate for policy change and meet patient and caregiver leaders. I am cursed to endure long calls with insurance providers, near-syncope at the grocery store and frantic stress when I run out of my essential medication. I am lucky to meet advocates, appreciate what my body can do and soak up joy around me. Like the poison dart frogs, the Escher’s artwork, I hope to keep living my contradictions.

 

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LinkedIn: Kathryn Cowie

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