My Courage to Care as a PF Caregiver Makes Me Rare

Feb. 29 is Rare Disease Day. Pulmonary fibrosis is one of the more than 6,000 known rare diseases. While PF may not have much in common with other diseases, those with PF share a connection with the one in 20 people worldwide who will live with a rare disease at some point during their life.

Does that number surprise you? It sure surprised me! This is a day to celebrate the lives of those with rare diseases and to spread awareness. It’s a day to educate and advocate for more research and better care in the future.

Pulmonary Fibrosis News is just one of a network of 65 websites devoted to rare diseases that are published by BioNews Services. These websites exist to serve rare disease communities by bringing disease information, up-to-date scientific news, forums, and columns into one place. BioNews Services has employees in 19 countries and more than 30 U.S. states.

The most amazing thing about this company is that many of its employees are patients living with rare diseases. There are currently 97 columnists writing for BioNews Services. For the first time in my life, I can say I am a minority among my colleagues, as I am one of the few columnists who is not living with a chronic health condition.

The BioNews motto is, “We are rare.” This month, we have been talking more about what makes each of us rare. The focus has been on our unique stories, our personality quirks, and our humanity. It’s also about bringing awareness to our rare diseases.

Kevin Schaefer, forums director and columnist for SMA News Today, talked about the robotic arm on his wheelchair that helps him live more independently. How many people do you know who use a robo-arm to accomplish their daily tasks? Rare is rad.

As I’ve been reading these stories and watching videos made by people living with rare diseases, I’ve been feeling a little bit … common. I have my quirks and qualities that make me unique, but what makes me rare within this community is that I am not living with a rare disease. I am an oddball within a group of medically rare people.

While I don’t have much to contribute to the conversation about what makes me rare-disease-patient-rare, my role at BioNews makes me rare for a number of reasons.

First of all, my job title is “columnist.” While not unusual, I am the only caregiver-columnist for Pulmonary Fibrosis News. Many people don’t even know what pulmonary fibrosis is, and far fewer have cared for someone after a double-lung transplant. And of those who have, I am not aware of any who are writing about their experiences publicly. If that isn’t a rare niche, I don’t know what is.

The second thing that makes me rare since I’ve been writing for Pulmonary Fibrosis News is that I have inside access to meet many incredible people living with rare diseases. Since most of us work remotely, we have an online work platform on Slack where we can chat and share ideas. I’m privileged that I get to connect with some of the most empathetic, witty, selfless, and empowering people.

Physical limitations and geographical constraints don’t matter when you can meet up with 100 co-workers online instantly. This is especially good for introverts like me because the online cafeteria has plenty of seats and all of the tables are full of cool kids.

Finally, BioNews has given me space to tell my story. It’s given me a routine that has helped me process the experience of going through my mom’s IPF diagnosis and lung transplant. I tell stories that are often hard to share, and I know they will be treated kindly by both the editing staff and the readers. I have a space to be vulnerable and open about things that I sometimes find hard to say aloud.

Writing my column is therapeutic for me, but I hope that I also help others. If telling my story makes one person feel less alone, less out of control, or less stressed out, then my occasional discomfort in exploring these topics is worth it. This column was created with the idea of finding my courage, and sharing that with you is what makes me rare.

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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.