How to hurt someone with chronic illness by a few choice words

I’m so tired of some people’s responses to my suffering.

I understand that some people might not get what I’m going through if they don’t have personal experience living with chronic illness. But I’d think they wouldn’t voice an opinion on something they know nothing about. Unfortunately, that’s not the case. People have said things to me that are hurtful and frustrating.

While living with cystic fibrosis (CF) and since my double-lung transplant seven years ago, I’ve heard too many ridiculous statements that make my eyes roll.

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What I’m hearing isn’t helpful

If I had a dollar for every time someone told me “but you look good,” I’d be a millionaire by now. People have told me that after I’ve relayed my current health struggles, as if I’m not fighting for my life, as if I’m redeemed by looking good. Here’s a secret: I’m not. It’s actually harder to get my needs met because my pretty face makes others unable to believe how sick my insides are.

Telling me to hang in there is a cop-out. I’m not sure what that means. To me, it’s an exit from an uncomfortable conversation.

“Just stay positive.” Believe me, if staying positive would change health circumstances, I’m willing to bet that even the most negative, half-empty people would flip their cup upside down to see the positives just so they’d feel better.

Asking how I’m feeling annoys me because my answer will never be awesome. I’ll most likely lie and say that I’m doing great just to ease the questioner’s likely unease with my health status. Rarely can people handle the truth about how I’m actually feeling.

“I know what you’re going through,” people say. Fill in the blank with the symptoms, but typically my struggles aren’t what others have gone through because of my various physical complications and chronic illnesses. People who tell me they know exactly how I feel aren’t being truthful, and that doesn’t help me; it does the opposite.

I’ve been asked, “Why are you still talking about what you’ve gone through?” That’s like asking why people talk about their jobs, families, and hobbies. It’s an important part of life.

“It’s just a cold,” they say. “Toughen up.” Most people don’t understand that my immune system is suppressed because of post-transplant, anti-rejection medications. Additionally, some nerves that send signals to my brain were severed during the transplant, so my symptoms take longer to develop. I also have a harder time getting rid of an infection, especially in my new lungs.

Before the transplant and since, people have said, “It must be nice not to work and do whatever you want.” Excuse me, but that just screams blatant ignorance. People have no idea how sick I was because I didn’t look like I had CF, and they didn’t know how grueling my transplant recovery was. Neither was a walk in the park.

“What do you do with your time?” I was asked while I was a hospital inpatient before my transplant. I rolled my eyes because the question bespoke a level of ignorance and lack of empathy that were at an all-time high. People have no idea what it takes just to get out of bed some days when functioning is a struggle, let alone have energy to do anything else. Also, it’s no one’s business what I do with my time, just as it’d be inappropriate to ask an able-bodied person the same question.

I’ve heard so many more phrases of this sort, but these are the repeat offenders. I’ve learned that watering down my experience to make others comfortable is extremely unhealthy for me. Being honest about my personal experiences has been healing and it’s my choice what I talk about.

It’s not helpful for others to make assumptions about my life. Just because they know someone with the same chronic illness or have read about it on the internet, it doesn’t mean that they truly understand. When these statements are made, it automatically makes me shut down and tells me they’re not a safe repository for the intimate details of my life.

The moral of the story is, please think before you speak.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.