Let’s Pursue the Workplaces We Deserve Despite Having Chronic Conditions

The last five months have been bumpy for my family. Back in November, my husband, Manny, and I both got COVID-19. I was hospitalized for several weeks and not expected to come home. My recovery continues, but I am grateful for the progress I have made. 

BioNews, the parent company of this website, has been a supportive and empathetic workplace during this time. Members of the BioNews team are more like family, and most have been affected by a rare disease.

If you have a chronic condition and are thinking about work, imagine what a company can be, then envision and pursue the workplace you deserve.

I thought I would never work again

People with a rare disease like pulmonary hypertension (PH) may find themselves unable to work. When I was diagnosed with PH in 2005, I was working full time in nursing. My medical team didn’t think I could continue.

I understood at the time, because I struggled just to climb the stairs to bed each night. But my heart still ached for a job that I loved.

But how could I take care of others when I couldn’t even take care of myself? Would I ever be able to work and help others again? 

A perfectly timed opportunity

I’ve enjoyed writing since junior high, so I started a blog about my life and PH. I wanted to help others and offer glimmers of hope to anyone who found themselves in similar shoes. While contemplating posting more often, a perfectly timed opportunity arose.

I was active in the Pulmonary Hypertension News Forums, and the moderators at the time, Brittany and Colleen, asked if I’d consider writing a column about my health journey. I was ecstatic that they would think of me. When Brad, the director of columns, interviewed me, I probably didn’t shut up in my excitement. 

He hired me on the spot as a weekly columnist for Pulmonary Hypertension News. I also later became a moderator for the PH forums. I enjoy offering hope and welcoming new members. Many want to know that they are not alone, and they constantly teach me new things by sharing details of their PH journeys. This close-knit community connection helps to improve their overall quality of life, and mine, too!  

I now also work with Insights, the research arm of BioNews. We strive to connect with rare disease communities as we delve deeper to understand each rare disease community’s circumstances and needs. 

I feel guilty when I can’t work

BioNews is such a different company than any others I’ve worked with, including in the medical field. Elsewhere, many employers see disabilities as undesirable for employment, but not the folks at BioNews. More leaders of companies need to think like them.

Although I only work a few hours a day, I always feel guilty when I take time off. At times, I feel like I am abandoning my team. However, everyone, including Chris, the CEO, and my other managers, remind me that they’ve been in my shoes, too. It helps to know that they understand and care about my well-being.

I’m often reminded that my health is always a top priority. Most companies fail to recognize this truth, but my BioNews family reminds me of my priorities when I can’t seem to find them myself. I am honored to be part of such an awesome team.

Living by a mission and values

My BioNews management teams have always been sensitive to my needs and accommodating with change. Whether I’m struggling with health or the recent loss of a parent, my team comes through each time. Members of my team at BioNews have taught me about connection, endurance, inspiration, and hope. 

Thank you, colleagues and friends at BioNews, for always being here when I need y’all. You are making a difference in my life and in the lives of many others, too. Y’all are the perfect examples of how companies should treat people who have diseases. We are RARE! 

You can work in a place like BioNews, too

Some companies do not hire those with disabilities, and it can be challenging to find one that will work with you. I have many PHriends who are working and have not told their employers about their health situation. I think they fear losing their job.

I would suggest doing your research in advance and being honest and upfront about your disability and any restrictions. If people at a particular company are not accommodating and willing to understand, I suggest you check into other companies. You are worth it, and don’t let anyone tell you that you deserve any less.

Are you working while PHighting PH? Please share in the comments below.

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Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.