Being diagnosed with a life-threatening illness and learning to live with it is not for the faint of heart. There is an abundance of emotions that accompanies a diagnosis plagued by a grim prognosis and no cure. No one can prepare you for how it feels to hear the words, “You have idiopathic pulmonary fibrosis (IPF),” and how difficult it becomes to emotionally, physically, and mentally accept life with a chronic lung disease. At least this has been my experience over the past three years.
While I wish this disease had never crept into my life, I don’t consider myself unlucky. Everyone has battles to face and mine are no better or worse than the next person trying to cope with a chronic illness. The daily struggles of IPF are not easy, and some days I cope better than others. Ultimately, I don’t have control over how this disease will progress. I do my best to follow medical advice, exercise, eat well, and enjoy quality time with friends and family. Knowing that I am trying my best with what I can control gives me peace. Worrying is a waste of my mental and emotional energy. Don’t get me wrong. I know this is far easier said than done.
Learning to live with IPF has been full of gifts and hardships. Sometimes those hardships can be overwhelming, such as the difficulty of accepting lung transplantation and all the considerations that come with it. Discussions about how your quality of life will change after a diagnosis of IPF, unpleasant medication side effects, and unemployment are all heavy topics that can make life seem really unfair. Because these conversations, decisions, and sacrifices are often part of our daily lives with IPF, it has become important for me to celebrate small victories in this journey.
After writing earlier this month about some tough decisions related to my health, I decided to reframe my thinking. I am focusing on the small victories instead of the difficulties. I realize that although things certainly are different compared to life before IPF, I can still do things that are normal for young adults and that are important to me. This month, I am celebrating the following small victories:
- Sharing my story: As a patient living with IPF, it has become important to help raise awareness about it. There is a lot of vulnerability that comes with sharing about your personal health, and despite writing about it regularly, I wasn’t sure I was ready to talk about my story in front of a group of people. I recently did this, and I am happy with how it went. I consider this a victory because it was something I was fearful about, and now I’d consider doing it again.
- Going to a concert with supplemental oxygen: Attending concerts is a normal event for many young adults and being dependent on supplemental oxygen doesn’t make it easy. Not only did I have to navigate the accessibility options in a large indoor stadium (alongside 20,000 other people), I also had to ensure my oxygen supply was sufficient to last for the duration of the concert. Furthermore, I had to keep my portable oxygen concentrator safe from the crowds and try to limit my exposure to germs due to my compromised immune system. A friend carried my oxygen for me and texted the “concert support” line to help us when needed. When others lined up to use the elevator, the support team came to prioritize those with accessibility needs. I wore my mask often and overused hand sanitizer to keep me as safe as possible. I definitely consider attending this concert (and having a great time) a small victory!
- A stable pulmonary function test (PFT): Patients on the Pulmonary Fibrosis News Forums talk about PFTs often, and how we are happy with “stable.” I’ve learned that not having fibrosis worsen is something I consider a small victory. Whether it is my medication regimen, the steps I take to protect my lungs, or just dumb luck, a stable PFT is worth celebrating.
What small victories can you celebrate this month?
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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.