A Look Back On My CF Journey
Last updated: May 2023
I figured, with it being Cystic Fibrosis (CF) Awareness Month, this was a great time to look back on my journey over the past year. So much has happened, I wasn’t quite sure where to begin. A year ago, this month, I had just started my journey at Cystic-Fibrosis.com.
After 36 years of life, I was only just beginning to be more vocal about my CF. I was only just beginning to feel comfortable in my own skin. Though I knew I wanted to make a difference, to advocate, I didn’t know where to start. I had lived for so long in the shadow of CF I wasn’t sure how to expose myself.
It started with a story
My journey started early last year (2022) as I started learning how to become more comfortable sharing my story. I wrote a short article about my diagnosis with the intent of publishing it eventually- maybe in a magazine.
That lead me to my next big leap. I took that next big leap last March by beginning to write here, but still, I only shared that news with a few people. May of last year I took the plunge and shared on my public social media page that I had been nominated for a social health award.
This opened up the flood gates and within weeks a large circle of my friends discovered for the first time in my 36 years- that I was a cystic fibrosis warrior. That led me to create an IG account relating solely to my CF journey. Still, I hid it from people close to me and I’m not quite sure why.
I suppose I was still unable to risk anyone seeing me differently. The idea of having limitations or those limitations holding me back made me uncomfortable. I didn’t want to be underestimated.
A turn of events
I guess that concept changed a bit when I was knocked off my feet towards the end of last summer. For the first time since starting Trikafta, I got sick. Really sick. By September I was having difficulty keeping up with work and found myself hospitalized. It was my first hospitalization in ten years, and it hit hard. That led me to losing myself at an alarming rate and questioning everything I thought I knew. I felt lost. I was lost.
It got worse before it got better and by the end of the year, I was probably at the lowest point I’ve ever been. My health was fading. My mental health was at an all-time low. I no longer felt like an advocate for CF. I couldn’t see outside my own misery.
A new year
I don’t know exactly what empowered me enough to get back up, but I did. I still struggled with my health, but I tried to power through. Some days I couldn’t and that was okay too. Those were the days I had to prioritize myself. Around this time my oldest son was also coming to terms with his own private battle. I think we both leaned on each other as we battled the turbulence.
As Spring approached, I came face to face with a difficult conversation. I had to discuss my diagnosis with my partner which I’d been struggling to do. It wasn’t easy for me to do. I've always struggled with this, and I was letting my inability to discuss it take control of me. I also knew he deserved to know.
I know he was surprised at first- probably more so about the fact I hadn’t told him. He was very supportive though. That's actually an understatement. Those moments were a turning point for me. He wanted to know about everything, which opened me up to sharing my story.
It was also a reminder that my CF didn’t change who I was. If anything, it made me more powerful for everything I’ve overcome. He reminded me of who I am and what I can do.
Since then, I made the decision to turn the short article I wrote into a full book. The story of my journey... for everyone to see. So other people like me, can maybe gain something from my story. As a published author, I always focused on other genres and ideas, but finally I decided I wanted to be a part of this wonderful community of CF warriors that shared their battle with the world. I got involved with my Instagram CF account again. Then, I sat down and wrote my journey- from the beginning. I started doing research on what I can do to support more advocacy for CF.
I started talking about my cystic fibrosis, even when it felt uncomfortable. I’ve found nothing but support along the way. My hope is to reach others who let CF hide them away and show them the beauty in accepting how amazing they are - CF and all. So, as we focus our attention on Cystic Fibrosis Awareness Month, I choose to celebrate the leaps we continue to make as a community. I choose to embrace my journey.
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