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

Though well-intentioned, these compliments can make me uneasy

Written by Anna Jeter |

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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.

Aunt Lizzie avatar

Aunt Lizzie

I know what you mean. What choice do you have when life gives you lemons? Up 'n at 'em kid. I can't go bushwalking or run a mile with my PH etc but love sketching, watercolour, studying etc. I'm 84 but plan on hanging around for a while yet. Cheers!

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Carol avatar

Carol

Wow this hit me so hard. It’s exactly how I feel. As nice as people mean to be- “you’re so strong” rips through me. I don’t want this disease They have no clue what we go through every single day. I’m alone I have no family left& all my friends moved out of state. I cry alone a lot. But we have no choice to continue on and fight. It hurts to go to dr appointments alone & go through so many tests. The drs don’t even understand. I’m depressed I’m angry and barely surviving. People see me walking and outwardly looking -ok not realizing the toll I face alone. My meds aren’t working like they were. One gave me liver disease. The lung hospital said I was not a recipient of a transplant. So I live with this alone everyday & when I hear ppl say that I cringe I’m not that strong. I need more people to empathize and understand my struggles. Just try and understand by putting yourselves in my place. Thank you for this article. You read my heart& my mind. Please pray for me Carol

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Sandy Jennings-Ingle avatar

Sandy Jennings-Ingle

This is such a hard topic, discussing chronic illness. I’m living with PAH and several other auto-immune diseases. I’ve also found that another one of the hard factors is to discuss our own mortality. Sometimes I work so hard at “Not wanting to be sick” that I miss the bigger picture of having an open, honest discussion about death / dying. I have to remind myself that we are all on this journey together.

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Catherine Hammond avatar

Catherine Hammond

I've never felt so seen!!!! People don't realize, when faced with these life altering issues, they would find a way to survive too. We're not super heroes... just super tired lol.

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