Stepping Back From Work Does Not Mean I’m Letting My Illness ‘Win’

Ever since I was diagnosed with pulmonary hypertension (PH) in 2017, I have been determined to live as normal a life as possible. As soon as I was able, I returned to work. My doctors had told me that lots of people with PH either don’t work or work part time, but I was eager to get back and prove to everyone that I was capable.

For years I worked part-time stints, which went well, but since last April, I have been working full time from home. When I agreed to increase my hours, I thought it would be fine. It’s not like working from home is physically strenuous!

But although I’m not in the office, longer hours have had an impact on my health and well-being. 

Sometimes it feels like managing a chronic illness is a full-time job in itself. We’re required to pay extra attention to what we eat, how much we rest, and how much exercise we do. 

In my new role, I found myself without the energy or time to make sure I was eating nutritious, low-sodium meals. Instead, I would snack on foods I normally try to avoid. 

Although I was sitting around all day, I couldn’t muster any energy in the evenings to do my normal PH-friendly workouts. I could feel my stamina dwindling and my breathlessness increasing.

I realized something had to change when the stress of my new role started impacting my ability to sleep. My mind was wired, and I spent the evenings worrying about meeting work targets. Getting a good night’s sleep was rare.

I was terrified to give up a job in the middle of the pandemic, but I knew that way of life wasn’t sustainable.

Now, for the first time since my diagnosis, I don’t have a job. At first, the concept made me panic. Having a normal job was a big part of what made me feel like my illness wasn’t “winning.” But I have come to realize that rejecting a life that left me drained and cultivating one that leaves me happier and more energized couldn’t possibly equate to letting my illness “win.”

Since I left my job, I have mostly felt relief. As much as I want a normal life, it’s unbelievably exhausting pretending to cope and trying to keep up in an environment where people largely have no idea what you’re going through.

I don’t know what the next steps will be for me work-wise, but I know I will prioritize finding something that allows me to look after my mind and body in the ways that I need to.  

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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.