Just Like the Movies

I always imagined my twenties would be like an early 2000s rom-com. I’d live in New York, my friends and I would get drunk off free drinks at rooftop bars, somebody would fall hopelessly in love with me and chase me through a crowded airport after I decided to pursue a new career in LA. Ya know, the usual.

Unfortunately, all my well-crafted daydreams drifted away when, at a measly 21-years-old, my heart stopped beating right.

While my heart raced and fluttered with unrelenting resolve, it dawned on me that my life was becoming less like a cheesy rom-com and more like a tragic coming-of-age movie every day, and I was NOT okay with it.

Art by Maddy Sutka

Were it not for the boy who fell hopelessly in love with me (do not cue the airport scene, I have zero careers and I’m already in LA), I wouldn’t be as comfortable with my illnesses as I am today. Honestly, had it not been for him, I might not have gotten diagnosed at all.

From our very first date to our (almost) one-year wedding anniversary, I’ve never had to question if I can rely on my husband. No matter the situation, he manages to handle everything—including my intense panicking over said situations—with ease. He is my calm during every storm, and he provided unwavering support and compassion during one of my most difficult journeys.

And I definitely didn’t make that process easy for him.

I didn’t go to the doctor or see a dentist often when I was growing up, so I was unable to fully recognize the value of getting checkups regularly and staying in the know about my health, even in adulthood.

When muscle pain and weakness started to accompany the tachycardia soon after it began, I stayed in bed, assuming I had the flu and it would go away with rest. When I stopped feeling hungry, I didn’t really know what to think. There was no denying that my body was struggling, but going to the doctor was not an option in my mind.

Even as my symptoms persisted and worsened, with new issues popping up almost daily, I tried to manage them on my own. I felt so much embarrassment over the sheer idea of admitting I needed help. I knew something was seriously wrong, but I was scared that no doctor would believe me. As terrified as I was by the suddenness and urgency at which my body was deteriorating, I was more scared of being seen as dramatic.

While I battled with my body and my thoughts, my husband urged me to see a doctor with the most gentle and patient ferocity. His care and concern for me remained constant. He reminded me that I could talk to him about whatever I was feeling, and he assured me that I was not bothering him (or anyone else).

He helped me eat soup and brought me vomit bags and Pepto when my stomach couldn’t handle the nutrients. He monitored my heart rate and set the air conditioner to freezing so I wouldn’t faint. Best of all, while he had maintained respect for my boundaries and concerns about seeing a doctor for as long as possible, he convinced me to go to the hospital when the chest pain started.

More visits followed, and I’m going to be honest: every single one of my ER visits sucked. But I am still so thankful he made sure I went.

All of my EKGs and chest x-rays continued to come back normal, the doctors at the ER had no answers about what was causing my tachycardia, and instead told me I was anxious and suffering from panic attacks.

Being told I just had anxiety when my entire body was in constant pain was a huge blow emotionally. I felt dismissed and my fears about appearing dramatic were affirmed.

As always, my husband showed up for me.

He questioned every doctor’s insulting conclusion — “You injected anti-anxiety medication into her IV and her heart rate is still in the 140s, how is this a panic attack?”

He listened while I vented and hugged me while I cried. He handled my frustration with grace and made me laugh anyway. Even through my worries he made me feel safe, and he promised that we would figure everything out.

And he put that promise into action. He looked for the best doctors our insurance covered. He scheduled my appointments, called to confirm them, and missed countless hours of work to make sure I got there. He helped me track my symptoms so I could efficiently relay them to every doctor I saw. He made sure that I got the best care possible every step of the way.

Art by Maddy Sutka

After eleven months of “what the fuck is happening,” I finally got diagnosed with POTS and Undifferentiated Connective Tissue Disease. Tons of appointments and emotions followed my diagnoses.

The appointments allowed me to grow more comfortable with doctors and (gradually) learn to speak about what I experience with confidence and certainty. The emotions are tougher to manage some days more than others, but as I work through the process and frustrations of relearning how to navigate my life, my husband reminds me that I will find a new normal someday.

The past year and a half has been one of the hardest times of my life, but also one of the most fulfilling. During all the uncertainty surrounding my health, I haven’t had to doubt for a second that I am loved.

And no matter how much our life together mimics a cheesy rom-com and a tragic love story, it’s a movie I would watch over and over again.