What I’ve learned about working full time with a chronic illness

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I had no idea how much my life — and my career — would change. At the time, I was fully immersed in my job as a financial analyst, balancing deadlines, meetings, and the typical stresses of corporate life. But suddenly, I wasn’t just managing spreadsheets — I was managing a rare blood disorder that came with relentless fatigue, unpredictable symptoms, and a treatment regimen that often dictated my schedule.

For anyone living with PNH, the question of whether to continue working full time isn’t simple. Some days, I feel like I can handle anything. Other days, the exhaustion is so overwhelming that even getting out of bed feels impossible.

So how do you find a balance? Should you push through, or is stepping back the better choice? I never want to feel less than or lazy even though I’m not in control of my symptoms.

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March 10, 2023 by Brandi Lewis

How I navigate a career while managing PNH symptoms

My experience

For me, work has been more than just a paycheck; it’s been a lifeline. Having a career provides financial security, which is crucial when managing a disease that requires expensive treatments like Soliris (eculizumab) or Ultomiris (ravulizumab). Without health insurance, these treatments can cost hundreds of thousands of dollars per year.

Beyond the financial aspect, working full time has given me a sense of normalcy. PNH already takes so much — our energy, our spontaneity, sometimes even our confidence. For me, staying in the workforce has been a way to reclaim control. It keeps my mind engaged and allows me to focus on something other than lab results and infusion schedules.

But working with PNH isn’t easy. Fatigue is my biggest enemy, and stress can make it worse. There have been days when I had to excuse myself from meetings because I felt lightheaded and days when I powered through, only to crash the moment I got home.

One thing I’ve learned is the importance of accommodations. Under the Americans with Disabilities Act, employers must grant reasonable accommodations to qualified employees with chronic illnesses. The Family and Medical Leave Act allows eligible employees to take up to 12 weeks of unpaid, job-protected leave per year for qualifying family and medical reasons.

For me, accommodations meant discussing remote work options, flexible hours, and understanding the importance of rest when needed.

Should you work full time?

The truth is there’s no right answer — only what’s right for you. Some people with PNH manage full-time work with the right support. Others find that reducing hours or switching to a part-time role makes a world of difference in their health.

If you’re struggling, consider:

• How is work affecting your health? Are you constantly drained, getting sick more often, or struggling to keep up?
• Can you adjust your work environment? Would remote work, fewer hours, or a flexible schedule help?
• What are your financial options? Disability benefits, workplace accommodations, or even switching to a less demanding role might be worth exploring.

I won’t pretend I have it all figured out. Some weeks, I feel like I’m thriving. Other weeks, I wonder if I’m pushing myself too hard. But I do know this: PNH has forced me to become my own advocate. I’ve had to speak up about my needs, set boundaries, and most importantly, give myself grace on the tough days.

If you’re living with PNH and trying to work, know that you’re not alone. It’s OK to slow down when you need to. It’s OK to ask for help. And most importantly, it’s OK to put your health first — because, at the end of the day, no job is more important than your well-being.

Are you managing PNH while working? I’d love to read about your experience in the comments below. Let’s support each other.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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