Please don’t tell me how strong I am for living with chronic illness

While settling in for a recent clinic appointment, a nurse reviewed my record and praised me for the breadth of my health history, noting how impressive I was for everything I had survived. This response isn’t uncommon when people learn that I had a heart and lung transplant.

My nurse was sincere and kind, but these types of conversations can rattle my mind. I never quite know how to respond. “Thank you,” paired with a placid smile, is the easy response, but it does little to encapsulate my mixed emotions.

Throughout my life, various iterations of this interaction have prompted similar feelings. While living with pulmonary hypertension, people would frequently tell me, “You’re too young to be this sick!” No one ever said it with malice, but having this truth stated so blatantly always left me uneasy.

Later on, following my transplant in 2018, friends and strangers alike would frequently say, “I don’t know how you did it. I never could have.” After everything I had been through, this comment always stung a bit. I wanted to explain to them that I had to do it.

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As I reflect on what ties these interactions together, I believe it comes down to acknowledging my agency, or in some cases, lack thereof. As someone who was diagnosed with a rare and chronic illness at a very young age, I feel it’s deeply important for people to understand how illness can be a lottery. My circumstances could have belonged to anyone; it was simply by chance that the fates assigned them to me.

Rather than making statements about how brave I’ve been or how unfortunate it is for someone so young to be so ill, I wish people would make a greater effort to empathize. I didn’t choose to endure what I have. My illness is not a sport I decided to pursue or a degree in which I hope to earn high marks. The truth is, I am strong. I have to be. But that doesn’t mean I want to be reminded of how much more has been asked of me than most.

Whether it’s fate or luck, or something greater, severe illness is a task that could be asked of anyone, at any time. My life could belong to anyone; it just so happens that it belongs to me. When people say, “I don’t know how you did it,” I want to explain that there’s no magic to it. My resilience was born of unfair necessity, the same way it would be summoned from most people put in my place. I haven’t had an option to escape it; I’ve simply had to rise to the occasion, with no other options at my disposal.

In the end, I know that no one aims to do harm with these sentiments. I also know that it can be hard for people to be properly informed about why their words might not sit right with someone like me. Perhaps one day I’ll be better at redirecting the conversation, but if anyone reading now is wondering, sometimes the best thing you can say is, “I’m sorry you had to go through that.” Beyond that, there’s certainly something else we can talk about.

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.