Celebrating 1 Year of Finding My Path Through Writing
It’s been one year since I joined BioNews, the publisher of Pulmonary Fibrosis News, as a columnist. At that point, I was trying to find my way in life with lymphocytic interstitial pneumonia (LIP) amid the COVID-19 pandemic.
I never thought I’d have so much to write about. It’s an honor to have a platform where I can reach out to people like me. Not only have I found it therapeutic, but I also enjoy helping others who are struggling to find their footing in the rare disease community.
Over the past year, I’ve written about my journey with LIP and the impact it’s had on my family and me. I’ve discussed the detours my life has taken, especially having to put my career on hold. I’ve written about grief related to my illness and the heartbreaking loss of my mother. I’ve shared about being hospitalized and diagnosed with atrial fibrillation. I’ve even covered medication expenses, mental health, my relationship with my husband, and learning to feel confident and important.
Each column has been a chapter in my life with rare disease, adding up to a year’s worth of learning, listening to others, and taking in words of wisdom. I have been overwhelmed at times, but I have also been humbled. I’ve met more people than ever before due to my illness. I’ve learned to accept that I’m different and imperfect. I’ve allowed myself to tear down the wall that I felt so safe behind, and to cry, scream, and laugh, all at the same time.
Writing has always been an outlet for me, but now it’s a way to voice my fight with LIP. It’s granted me the privilege of meeting and hearing from others who are fighting their own illness. I have learned so much from their stories of bravery. It touches me to hear that other patients read my columns.
I am not a medical expert, but I do have experience living with a rare, incurable disease. I tell my story to advocate for myself. My life isn’t always blissful, joyous, or funny, but I can provide honest insight into what it’s like to live through health difficulties. It’s frightening to feel like my lungs can’t take in air, and there are days when I feel like my body can’t take any more of this torture. I’ve come to dread the flare-ups that occur when my lungs fill with fluid. Writing has become my escape. I can share my pain, fears, and recoveries.
Knowing that others will read my columns gives me comfort. I am supported and not alone. Working for BioNews has given me purpose and courage.
I once believed that my teaching career had ended due to my illness, and I would never have a reason to feel valuable again. But I was wrong. Between my readers and the friends I’ve made, I now feel wonderfully connected to the world again. I’ve found a community full of people like me.
I read over my previous columns before writing this one, and I felt like I was reading a beginner’s journal. A year ago, I was only just starting to understand my illness, and my frustration came through in my writing. But something has changed: Acquiring more knowledge feeds my soul.
For someone with a rare illness, an anniversary is a celebration. It means that I have conquered another year with breath in my lungs. Now I have another opportunity to practice acceptance and achieve my goals.
There will always be times when life strikes us in the gut. But with my army of new friends and readers, I feel ready for another year.
Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.