If you asked me if I knew what a heart attack felt like, I could confidently answer that I knew that particular pain.
If you asked me how old I was when I first experienced that pain, I would answer that I was fourteen.
If you asked me what I had been thinking at the time, I would answer that I had exactly two thoughts in that moment. The first, “Dear God, I’m going to die while getting a bowl of Cheerios,” and the second, “I was really looking forward to that bowl of Cheerios.”
That experience is hard to forget. It’s one that I recall almost daily while taking my morning medication, even though the pain has long since faded. Though what I experienced that day wasn’t an actual heart attack, the sensation and the severity is one that is instantly recognized by almost everyone. It’s the closest comparison I can come up with when someone asks me what it feels like when I have an episode.
I didn’t know how else to describe what I was feeling to my parents who watched in disbelief and concern as I slid to the floor in tears. I didn’t know how else to explain to the myriad of doctors who didn’t quite believe me when I told them of the pain, or the tightening in my throat, the choking sensation I felt every time I ate, or my inability to not get violently sick after every meal.
How do you explain to someone what you’re experiencing when your disease is experienced by so few people?
It’s simple, you stop trying to.
A myriad of doctors couldn’t explain what I was going through, and after putting me on different treatment plans and all of them failing, I was getting worse. Ibuprofen and Tylenol became my constant companions to keep the pain at bay, and Clubhouse crackers and juice boxes were the only foods that didn’t make me throw up. I was rapidly losing weight and sleeping became a regular nightmare.
I was in a sick state: running daily on 3-4 hours of sleep (on a good night) and roughly 400-500 calories (if I could keep anything down).
My mom and I were becoming desperate to know what was wrong. Doctor after doctor couldn’t help, but my pediatrician set us on the right path. God bless Dr. Agnes Gomes and her no- nonsense personality. I went into the routine of describing what I was feeling and going through, with my mom supplementing with her nurse’s opinion. Dr. Gomes recommended an endoscopy, something that she spoke of in hushed terms with my mom.
As a kid, you know when the doctor lowers their voice and avoids eye contact, it’s not going to be good.
Along with recommending the endoscopy, she referred me to another doctor. A specialized doctor. One Dr. James Friedlander, specialized in the field of Allergy and Immunology. He knew, instantly after I described to him the memorized list of symptoms and experiences, what was wrong. Several allergy tests would go on to confirm his theory – I was suffering from a widely uncommon illness called Eosinophilic Esophagitis (commonly referred to as EE or EoE).
It’s a mouthful, I know.
I was overjoyed. What I was experiencing and suffering from had a name. I wasn’t out of line for describing to him the heart attack-like pain that came with the disease, it was something commonly experienced. Along with dysphagia (trouble swallowing), food getting stuck in the esophagus (impaction), vomiting, difficulty sleeping, lethargy, malnutrition, and weight loss.
I hit the jackpot of symptoms; I was the unfortunate winner in the chronic illness game.
You might be wondering, like so many others, what is EE? EE is an allergy-like reaction that happens in the esophagus. The esophagus becomes inflamed, narrowed, and produces an excess of mucus due to a high count of white blood cells that are produced in response to an allergen. The allergen can be food related, something I would come to find out in my case, or environmental based, like dust and pollen.
The only thing worse than not knowing the name of the disease, was quite possibly, the treatment.
But at least I could still eat Cheerios.
I really enjoyed reading your blog. I know it probably wasn’t easy to write about, or maybe it was, but I don’t think if I would’ve went through what you did, I wouldn’t have been able to write about it without a few tears. I think it’s crazy that you experienced that at just 14, but I’m glad you finally found a doctor that could give you and your family the answers you were searching for. I did like how you ended with “But at least I could still eat Cheerios.” It added a little humor and made me smile, and it tied in with what you said at the beginning which brought it full circle.
Kristen, you really do have a talent for writing narratives. You have such vivid language that makes the story flow naturally. You also know how to go through events at a good pace, with the right amount of detail. You have the kind of writing style that keeps people reading – I couldn’t stop until the end. The humor and seriousness intertwined in your story work well (especially since it’s a tough topic to write about). I don’t want to assume I know what your experience was like, but I do understand the trauma and frustration that comes with having health complications with no explanation. I’ve faced an unknown health complication since I was 5 and to this day I still don’t know what the cause is. Your story gives me hope, and I’m glad that you got closure — it’s such a relief that many people don’t understand. Thank you for sharing this.
Wow Kristen, I’m sorry you have had the misfortune of experiencing a heart attack at such a young age. As a fellow Cheerios enthusiast this story touched me on a personal level. This is another story that you absolutely need to have published. The utilization of your voice in your writing is so unique and entertaining. I found my reading this article like many of yours, totally engaged with a few chuckles in between. You have real talent.
Glad you were able to find a diagnosis and get the treatment you needed – you rock to work with!
This post is such a good way of going into your experience growing up with something so few people experience. When a perspective seems truly unique, it is so gratifying to finally find someone who understands, especially when they’re able to help.
Keep on keeping on!