Why I choose to write about my journey with CF and transplant
I share authentically because it gives others permission to do the same
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“Why do you keep talking about what you’ve been through?”
Yes, I’ve actually been asked this before. No, I won’t stop talking about what I’ve lived through. It’s not for my own sake, but because people continue reaching out to me to say that sharing my story helps them feel less alone in theirs. One way I get to do that is by writing this column!
Living with cystic fibrosis (CF) is not an easy feat. Throw a double-lung transplant in there, and it’s quite the cocktail of anomalies. Welcome to my life — it’s far from normal. But I’m not sure normal exists anyway. Plus, it makes for a great story to share because who doesn’t love an adventure?
Writing has always been a therapeutic outlet for me. Ever since I can remember, formulating words birthed from both my painful experiences and my victories in life was the best way for me to articulate the highs and lows of living with chronic illness. Playing with words is one of my favorite hobbies, so I was excited to have the opportunity to write a column.
The power of the pen
I began writing for Bionews, the parent company of this website, more than six years ago. I shot out of the gate by talking about my journey with CF and transplant. Shortly after that, the COVID-19 pandemic hit, and I had a boatload of topics to cover as someone living in isolation to stay safe. I slowly transitioned into talking about all things related to mental health due to my profession as a therapist, as well as discussing the challenges of living with a disability in an able-bodied world, flipping metaphorical tables in the process.
I care about discussing things that most people shy away from. The taboo topics that a lot of people experience, but nobody wants to acknowledge, are my jam. Controversial matters aren’t comfortable to talk about, but because I’ve rarely been comfortable in my life, I’m used to that tension. That’s why I’m perfectly at ease discussing embarrassing topics like pooping, vulnerably sharing my own mental health struggles, and challenging mainstream narratives about disabilities. I’m sure that these subjects are on people’s minds, but they’re not often discussed out loud.
That might not resonate with some, which is OK! Personally, it’s worth the risk that it poses to my reputation to share authentically and vulnerably because I’ve found that it gives others permission to do the same.
Through my column, social media, and being involved in the CF and transplant communities, I’ve learned that the internet has the power to connect people from all over the planet. That’s made it easier to talk to others who have similar genetic codes and have been through lifesaving organ replacements. It also helps to connect with others where they’re at. Oftentimes, we isolate ourselves to protect our health or aren’t well enough to do things in person. I’ve been able to talk to people when I’m in the hospital, traveling, or sitting at home. It’s truly been a game changer.
As I reflect on National Columnists’ Day on April 18, it’s an honor to be a part of the crew of columnists here at Cystic Fibrosis News Today. I’m humbled that I get to write about my life in a way that is real, raw, and vulnerable. I hope I make you laugh a little bit, too. Swapping war stories of our lived experiences never gets old for me. Thank you for being here for the journey. I’m truly in awe at what a gift it is to write!
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.
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