In honor of Pulmonary Fibrosis Awareness Month, I’d like to tell you, in my own voice, what it’s been like living with a terminal lung disease as a young woman. Naturally, I felt very alone, unsettled, and isolated from my peers when I was diagnosed. Sharing about my experiences, however, has not only helped others, it’s also helped me live with IPF. Here is my story—listen along or read!
Typically speaking, I am a very private person and remained this way for months after my IPF diagnosis. Everything felt out of control and I often pondered how and why I was diagnosed with a life-threatening and chronic lung condition as a young adult, especially because I’ve been previously healthy and active all of my life.
I was first approached to write about my story and life with IPF by an incredible advocate and friend in the Pulmonary Hypertension community. She has since passed away, and I will be forever grateful to Serena for encouraging me to step out of my shell and start writing about life as a young adult living with a chronic illness.
It took me some time to test out my writing skills and to consider what I wanted to write about, but I am grateful for the connections I’ve made as a result of doing so. Not only have I heard from a number of other people living with IPF that my columns and blog posts resonate with them, but they’ve also shared that my writings have helped inform their doctor’s appointments in terms of what questions to ask. They’ve also said that they have found relief from symptoms through some of the topics I’ve chosen to write about.
Most importantly to me, however, is the fact that others have shared that they feel less alone as a result of my writing and living with IPF, and ultimately, this is why I chose to write about my experience of having a chronic lung disease as a young adult—no one should have to face this disease alone.
I remember feeling very alone, unsettled, and isolated from my peers when I was diagnosed. Writing about my experiences not only helps others, it’s helped me realize that I am not alone in this journey either. Writing has become very therapeutic for me—it is a safe way to express my feelings, fears, frustrations, and questions. Now that I’ve heard how beneficial it is to others, I consider it a true privilege to write about my experiences of living with IPF.
This is part 2 of a 4-part series. Stay tuned to find out why PF Awareness Month is important to me and how you can help spread the word about IPF.
Please don’t hesitate to reach out by leaving a comment below. I look forward to hearing from everyone while I continue to share my story with you all.
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