Growing up with PH meant answering a lot of questions from peers

Growing up with a rare, chronic illness can draw a lot of attention. Specifically, it can raise a lot of questions, especially from other kids. I can’t remember an age when I wasn’t required to explain my health situation to others, particularly my peers.

Early on, absences from school would lead to lunchtime interrogations in the school cafeteria. Being gone for a certain number of days meant discussing the specialist I had to see in another state once a year and the various procedures I had to undergo while there. At the age of 7, I was a pro at explaining heart catheterizations and central line placements.

In middle school, another prompt of curious questions was when I had to sit out gym class for the day. There was always interest regarding why I couldn’t swim or run a mile. I looked “normal,” so it was always challenging to defend my need to skip certain activities.

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Somewhere between middle school and high school, these conversations became more complex. My friends wanted to know more about my life and how pulmonary hypertension (PH) affected me. As we all matured, I learned how to better educate others and advocate for myself, and those who were close to me developed a deeper understanding of how serious my illness was.

Throughout this evolution, there was one sentiment I could never escape, especially when speaking with someone new. “How long will you have the pump?” people would ask, referring to the small device that was attached to my body from the age of 4 to 23. It was a valid question, but what they really wanted to know was, “When will you get better?”

The simple answer I provided was that there wasn’t a cure yet. Unless that changed, I’d need the pump for the rest of my life. What I wanted to say was that I’d never get better. In fact, I’d only get worse. Over the years, my vocabulary and backbone grew, and I could meaningfully expand on these conversations, even if the answers were hard for people to hear.

Before my heart-lung transplant in 2018, one of the more memorable conversations was with a fellow nursing student. In one of our classes, we had to give a presentation on a disease of our choice. Seeing it as an opportunity to educate my peers, mine was about PH. Naturally, this included the typical prognosis and potential outcomes. A lot of this information was already known by my close friends, but it took some of my other peers by surprise.

“That’s not what you have though, right?” an acquaintance asked in an attempt to clarify that my illness was of a lesser degree. I explained that I did have terminal PH, just as I’d described. In fact, my disease was so severe that I was listed for a transplant. Although she was an intelligent nursing student, she found what I was saying hard to comprehend. For the most part, I appeared healthy. She couldn’t reconcile the information I’d shared with the life I was living.

I think back on this memory and recall how truly invisible my PH was at times, despite how sick I was. In some ways, this made answering questions harder for me. Because I might appear to be completely healthy, the illness remained abstract.

Growing up with the burden of educating others about such a devastating illness wasn’t an easy task, but I’m proud of how I’ve progressed on that front. I believe that all of those years answering questions have made me an insightful and empathetic communicator, a quality I see in many other PH warriors as well.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.