Why I wish people wouldn’t search cystic fibrosis online
No 2 experiences are alike, so it's best to learn directly from patients
What is cystic fibrosis (CF)? I get asked this question on the regular. My automatic response is: Please don’t search it online. No, really. Just don’t.
I equate searching CF online to looking up your symptoms when you’re sick: Both typically result in death. (That’s dark humor.) But truly, search engines offer blanket statements that don’t always apply to individuals.
The worst thing is having people make assumptions about my life just because of something they’ve read on the internet. They seem to detach any information they find from actual people with the disease. Some will talk about me when I’m right there, as if they’re the expert on my disease, just because they did an online search. They like to tell me facts about my own health.
I wish that people would think before they speak.
Just because something is on the internet doesn’t mean it’s accurate. I have tons of friends in the CF community and can tell you that no two cases are exactly the same. We each have a slight variation in our symptoms and health experiences, even if our genetic mutations are similar. It’s not fair to be lumped into one group just because we share the same disease name.
Also, the typical statistics that appear in search engines aren’t completely accurate and up to date. If the statistics about my age, health situation, and outcome applied to me, I would’ve been dead a long time ago. I understand that, from a scientific and healthcare perspective, estimates about life expectancy can be useful. But on a personal level, there’s no guarantee these numbers will apply. Too many immeasurable variables contribute to how long someone will live.
My personal experience with CF
The thing is, I’ve beaten the odds since I was born. I nearly died within my first few months, but miraculously, I bounced back and went home. My life has almost always mirrored that pattern.
I have a similar story of when I needed a double-lung transplant seven years ago. It didn’t follow the path that most have experienced. Long story short, I went into respiratory failure, was on 55 liters of oxygen, and then miraculously bounced back, at which point I was sent home to wait for new lungs.
These are just two examples of my unique experience with the disease, neither of which is represented in CF literature.
That’s why I implore others to ask me questions about my health. If you want to know what CF is, I’m the expert on my own experience with the disease. I’ve always been a bit of an anomaly, so my story shouldn’t be compared with others. There are too many idiosyncrasies that don’t align with what most know CF to be.
Word to the wise
People want to share their own experience. Our personal insight doesn’t live in a textbook and is rarely detailed in a medical journal. I’m not a betting woman, but I’d bet that anyone with a chronic health condition would say the same thing.
That doesn’t just relate to health circumstances, though. Whether it’s health, relationships, family, jobs, etc., it’s best to ask people about what the experience is like for them. It’ll always be unique because that’s how we’re designed. And people want to be treated as such, not clumped together misleadingly with others.
I’d rather tell someone about my personal experience with CF than have them learn about it from a textbook or the internet. So before you search CF online, how about we have a conversation? I bet you’ll learn more than the search engines will ever know.
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.
About the Author
Comments
Jane
I believe that conversations are invaluable, however Web searches are sometimes the only way to go. I’m referring to a conversation I had with a Consultant Chest Physician of many years standing.
Having had lung issues since I was a child, damage to both lungs, many years in and out of hospitals, he announced that my lung issues are psychosomatic. In other words, I’m on my own.