I am a believer in the power of sharing stories. I believe that our narratives can shape and inspire others. As a columnist for Pulmonary Fibrosis News, I hope to help others by sharing my story about living with idiopathic pulmonary fibrosis (IPF) as a young adult.
“When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else.” — Iyanla Vanzant
I recently wrote about the benefits of being vulnerable and wanting to highlight the young adult perspective of living with a fatal lung disease. But it wasn’t an easy decision at first. My diagnosis was too raw, and a few interactions had left me feeling uneasy. I wasn’t ready to go public. It is important for patients to make privacy a priority when they need it.
After working through my diagnosis and how my life would change, I chose to share my story because I believe in the power of helping others.
What about asking the ‘wrong’ thing?
There are taboo topics when it comes to rare diseases and disabilities, and people often are afraid of saying the wrong thing. But if asked out of curiosity instead of judgment, there is no wrong question. I appreciate when others want to learn about my condition because it helps spread awareness.
IPF is a terminal disease. Even with a successful lung transplant, a patient’s life is likely to be shortened. Topics such as death or infertility are often things people wonder about but refrain from asking. I am here to tell you that curiosity leads to understanding, and there are no wrong questions to ask me.
I have mentioned that best-selling author Kristan Higgins has been in contact with me about a novel she is writing about a young adult living with IPF. I appreciate that Kristan has asked me some of those harder questions. It will ensure that her fictional character’s experience with IPF is adequately portrayed. I would much rather answer her difficult questions than have misinformation shared.
If you’re uncertain, following are ways to approach asking patients about their illness:
- Preface your question: Because so many aspects of living with a chronic illness are out of a patient’s control, allow us some control when it comes to satisfying your curiosity. Acknowledge that it may be an uncomfortable topic and that it is up to us how much we want to share. Letting us know that you are aware your question might be a tough one makes us feel respected and supported.
- Explain your reasoning behind the question: Many people without a chronic illness are curious, and that’s OK. It might be a specific topic you are interested in, or maybe you are asking for a friend who is experiencing something similar. Regardless of your reason, many patients with rare diseases are happy to help.
- Share if and how the information will be used: It is important that I know what will be done with the information I choose to share about my illness. It helps me tailor my responses to a particular audience and be aware of additional questions that may result from the information that is shared.
How do you feel about answering personal questions pertaining to your IPF/PF journey? Please share in the comments below.
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.
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