“When people search about rheumatic heart disease on the internet, they often get the impression that it was virtually eradicated from the United States. However, I am an American who was diagnosed with rheumatic heart disease in March of 2021. Over time, I have grown to understand how this condition has affected my perspective on life.
Initially, one of the questions I have always asked surrounding my diagnosis was ‘Why me?’ Even though it appeared as though I was functioning fine to my friends, deep down I knew that my diagnosis was weighing on me. Having to accept the fact that I was going to be more fatigued and having to take breaks more often than my peers was extremely difficult, and is still something I struggle with to this day.
One of the typical reactions I am used to when telling people about my illness is a look of shock. They often tell me that they never would have guessed that I was ill, or would say that I ‘looked healthy.’ Over time, I felt as though I needed to function the same way that everyone else did because I didn’t look like someone with a chronic illness. Throughout the first few years after my diagnosis, I brushed my illness aside, aiming my sight towards being normal, like my friends. For a long time, I was reluctant to share my illness with others, in fear that they would treat me differently or that they would look down upon me. What I didn’t realize was the burden of hiding my struggles and trying to do things that were not sustainable in the long run.
I started noticing a progression in symptoms shortly after I entered high school. It began with worsening a feeling of fatigue, which initially, I disregarded as just stress from transitioning to a different school. It was only a couple months later in which I would begin thinking that something was wrong, after I began developing symptoms of shortness of breath and chest pain, which began to interfere with everyday life. For the past few years, I was able to hide my illness from others, and play a facade that I could constantly live up to the expectations of everybody around me. I had control over my life until that point, but I felt like heart disease was slowly ripping that control away from me.
I realized that I couldn’t live with this grief bottled up forever. Sooner or later, people would find out about my heart condition, but I had the power to tell my own story.
It started small. I pulled my coach aside at swim practice one day to have a serious conversation about my condition. To my surprise, talking to him actually made me feel better about my struggles with my condition. Instead of rejecting my condition and brushing it aside, I learned that I needed to embrace it in order to feel seen.
Today, I continue to reach out to different people to share my story, not only for my own benefit, but also because having rheumatic heart disease gave me a sense of purpose. Globally, 40 million people live with rheumatic heart disease, and there are likely thousands of other kids in the US who live with rheumatic heart disease, feeling isolated because they feel like there’s nobody like them. By sharing my story, I hope that I can help other people with similar experiences as mine feel as though there is a beacon of hope in their journeys.”
Sophia
Maryland, USA
