Have you ever gone to bed not knowing if you’d wake up in the morning? I have. Many times. That’s the reality of living with heart problems. It’s a terrifying existence that forces you to confront what actually matters in life.
There’s an interesting paradox to it all. Having these near-death experiences has pushed me to try to really live, to spend time with the people I love, and to try to live like a normal twenty-something. But doing exactly that is often what puts me into those terrifying episodes in the first place of my heart racing to 215+ beats per minute. So how do you live life to the fullest when a ticking time bomb follows you every step of the way?
We talk about heart conditions, and chronic illness more broadly, as if they are only about physical symptoms. And while those symptoms can be, and are, debilitating, what is discussed even less, which says a lot considering how under-discussed the physical side already is, are the psychological challenges that come with living in a body that feels unsafe.
With endometriosis, the psychological toll has mostly come from not being believed by medical professionals, feeling misunderstood by the people around me, and trying to come to terms with having a lifelong painful disease with no cure. These are things I’m still working through more than ten years after my diagnosis, and I don’t know if I’ll ever fully move past the medical trauma I experienced while trying to get answers. But the psychological challenges I face with my heart conditions are different, because I’ve never feared for my life due to my endometriosis.
Being in your early twenties and having to make every decision based on how your heart might react is exhausting. I can’t eat sugar or drink alcohol too close to bedtime or I’ll be up all night with a racing heart. I have to ask others to replace my water jug at work because I’m not supposed to lift heavy things. I walk slowly up hills and stairs to avoid triggering an arrhythmia. I can’t attend work events if I won’t have a seat. I do everything I can to get a seat on the train so I don’t pass out during my commute. The stress of that alone gets my heart racing in the mornings.
I wake up in the middle of the night thinking there’s an earthquake, only to realize it’s my own heart beating so fast that it’s shaking the entire bed. I go to sleep not knowing if I’ll wake up in the morning. That fear doesn’t get easier. If anything, it follows me into other parts of my body.
After two back-to-back heart surgeries and years of living in constant fear, I developed neurological chest pain called intercostal neuralgia. It is a condition involving the nerves between the ribs and causes excruciating chest pain. After my second heart surgery last February, I underwent every test imaginable and no cardiovascular cause was found. Instead, the conclusion was that this pain is a result of the ongoing trauma my body has endured. My neurologist believes it will subside once I recover from my upcoming third surgery, one that is meant to finally put my atrial fibrillation at bay and allow me to move forward from the trauma my heart conditions have caused over the past few years.
Medical conditions do not stop at textbook symptoms. They can leave lasting psychological scars. I wish I had advice to share on how to manage that part of it, but the truth is I’m still figuring it out myself and probably will be for some time, until I can start feeling safe in my own body again.
I know my loved ones are scared for me. I try to be strong for them, but I’m scared too. Not all the time, because this has become my reality, but often enough, especially when I’m alone with my thoughts. That’s why I try to keep my brain busy.
Still, with my third and hopefully final heart surgery scheduled for the coming months, I’m starting to see the light at the end of the tunnel. I won’t let myself fully celebrate just yet. I thought this would all be over back in November 2024. But this time feels different. And for now, that hope is enough.
