Chronic illness and work: How to navigate through your career

How to make the best of whatever season of disease severity you're in

Marisa Zeppieri avatar

by Marisa Zeppieri |

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It can be a sticky topic — working (or not working) when living with a chronic illness. We travel so many journeys when we navigate this aspect of our lives. The fact is, each one of us will, at some point, experience our health intersecting with our ability (or inability) to work.

As the years pass, some seasons of disease severity may let us work part or full time, while others may prevent us from working at all. Bottom line, employment and finances can throw us some curveballs when we’re managing our health. Here are a few tips and insights I’ve learned along the way.

Throw the word ‘burden’ out of your vocabulary

Over the years, I’ve interacted with so many people living with lupus, and for those who weren’t able to work at the time, I heard them mention the word “burden” a lot. Seriously, if I had a dollar … .

The truth is that I personally understood this feeling, and at the same time, it broke my heart. For the first seven to eight years after I was diagnosed with lupus, I saw myself as a burden. I couldn’t work; heck, I was hospitalized so many times that there were days and weeks I couldn’t even feed or shower myself, let alone do a job.

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My Worth Is Not Measured by My Work

For someone who’d spent many years in college to finish a bachelor’s degree in nursing, needing a nurse instead of being able to serve as one was a major blow to my self-esteem. My mom and elderly grandmother were also caring for me. Unfortunately, I sometimes poured out my frustration on those in my household because I felt I had nothing to offer.

Counseling, praying, and trying to see life from a different perspective helped guide me through this period — but it was messy. Looking back on that season now, I see I had zero strength or stamina to handle working.

My body was fighting so hard. I was blessed to have family who supported me, and my therapist was a rock; she helped me recognize that in our society, we can easily get caught up in the hustle culture, and social media can fill up our mind with the idea that everyone else is getting so much done and we aren’t measuring up.

The truth is, we with lupus are all walking our own journey, and comparing our life and career with that of someone completely healthy is anything but a level playing field. Remember that even if your current season doesn’t allow working, that might not always be the case. I’ve seen so many — myself included — who find meaningful endeavors at home, either hybrid or remote. Some even open their own home-based businesses. You’ll know the ifs and hows to working when the time is right.

Know your rights

If you’re in a season where you can work or look for a job, I recommend that you read up on the Americans with Disabilities Act (ADA). This legislation can act as a lifeline for those of us with chronic illness who are navigating the workplace. Under the ADA, employers who have 15 or more employees are required by law to offer a disabled worker reasonable accommodations so they can do their job.

What’s a reasonable accommodation, you ask? I’ll give you some examples I’ve seen. A worker with lupus might ask an employer to change the fluorescent light in their office to a type of lightbulb that doesn’t set off flares and symptoms. (Those with sun sensitivity should not be under fluorescent light.) In another instance, someone living with inflammatory bowel disease might need a desk or work area that’s close to a bathroom. Another accommodation might be the ability to work away from the office sometimes, or get time away for an IV treatment or a daylong visit to a clinic.

Of course, asking for an accommodation means having a transparent conversation about your disability or illness with your human resources department or supervisor. You might also have to furnish medical documentation. One tip I’ve learned in these cases is to get everything discussed in writing — either the initial conversation or a follow-up. That way everyone is on the same page, and the interaction is documented.

This journey can have its ups and downs, but we must remember we have purpose, whether we’re working or not. Give yourself grace and patience, no matter which season of your disease you’re navigating!

Note: Lupus News Today 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 Lupus News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.


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