I Have Cause to Celebrate This National Disability Employment Awareness Month
Every October, numerous causes host an awareness month. For instance, you are likely aware that it’s Breast Cancer Awareness Month. Thanks to widespread campaigns, pink ribbons have been popping up everywhere in my city and on virtual platforms like Facebook.
A lesser-known but significant awareness month also occurs in October in the United States. National Disability Employment Awareness Month is particularly meaningful for me and other employees at BioNews, the publisher of multiple rare disease sites including Pulmonary Fibrosis News.
Did you know that all of BioNews’ columnists and forum moderators are patients or caregivers affected by a health condition? This is unusual for a company, and it brings authenticity to the content in a way other publications lack. Personal experience can be far more relatable to readers. Leaders at BioNews are proud to employ patients with rare diseases and disabilities, which I deeply appreciate.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease, in 2016, I never planned on writing about my experiences. In fact, I hated English in secondary school. However, writing for BioNews has empowered me as a rare disease patient in ways I never knew were possible. It has also given me the confidence to see my rare disease as an asset. I’m able to help others, and I have skills that employers value, despite being physically limited and requiring supplemental oxygen.
I’d like to live in a world where disabilities and rare diseases are always welcome in the workplace, but unfortunately, that isn’t the case. While I haven’t been mistreated due to my illness, some of my fellow BioNews columnists have. For example, Cystic Fibrosis News Today columnist Lara Govendo wrote about getting fired for being sick. Reading about experiences like hers means that I can’t help but worry when my rare disease and subsequent health needs come up at work.
I started a new job this January after my mental health had suffered drastically in my previous position. For months, I was hesitant to share news of my lung disease, and often hid my need for oxygen, which was possible while working from home during the COVID-19 pandemic. I didn’t like hiding my IPF, but I struggled to feel comfortable sharing because not all companies embrace employees with rare diseases and disabilities.
When I finally shared about my IPF months after my employment began, I downplayed its seriousness. By doing this, I wasn’t setting myself up for success in times of sickness, because no one really understood how important it was to take care of myself.
In addition to the narratives I tell myself about employees with rare diseases, I also worry how my colleagues and employers will perceive me. Will they believe I’m capable of doing the job? Unfortunately, some have questioned my ability to do a job well, which felt unfair, and didn’t set me up for success.
Many of my BioNews colleagues, who also have rare diseases, are among the brightest and most dedicated people I know. They work hard and want to see others succeed. However, this isn’t always the perception of us in the workplace.
Some believe that those of us with disabilities are unable to keep up with the workload due to fatigue, brain fog, or medication side effects. I have also been asked upfront how much time I’ll need to take off for appointments. Some employers have been surprised that I can attend appointments in the evenings or outside of work hours.
These are just a few of the challenges that those of us living with rare diseases or disabilities may face in the workplace. Thankfully, as a writer for BioNews, I can feel proud of my employment and embrace the work that my colleagues and I do. That is cause for celebration this National Disability Employment Awareness 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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.