Working with chronic illness makes keeping my word to clients hard

Whether it’s a work meeting, family gathering, or friendly meetup, I always feel the need to mention that I might have to cancel due to my chronic illness. But most people don’t seem to fully understand this.

I remember watching a discussion on French TV where a woman said something along the lines of, “Oh, come on, if someone takes a leave just for a cold, where is our country going?” It was a heated debate about sick leave and how costly it is for the government. Even though I was watching from Algeria, on the other side of the sea, her words stuck with me.

It’s why I’ve never applied for a traditional job. The thought of physically keeping up with a 9-to-5 schedule has always terrified me. What the woman said that day on TV made my stomach turn.

For most people, a cold might be a minor inconvenience, but for me, it can turn into a month of exhaustion. With myasthenia gravis (MG), simple symptoms become exaggerated. A basic illness that a healthy person might recover from in days can overwhelm my body for weeks. It feels like my immune system throws a party, and my body becomes the main attraction for overactive antibodies.

And I know I’m not the only one. Anyone with a chronic illness or unpredictable health condition has to deal with the same thing.

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November 19, 2018 Columns by Rebekah Dorr

Finding Grace When MG Changes Our Plans

Planning for the unpredictable

As a freelance digital marketing specialist, I need more time before deadlines than others in my field. Many freelancers take only three to four days to complete projects, but I’ll add on a few more days. People often ask, “Why do projects take you so long? Your job requires only a laptop and the internet!”

The answer is simple: I plan for the possibility of getting sick.

I don’t get to choose which days I feel good. Every morning is different. Some days I wake up feeling strong and ready to work, but on others, I can barely lift my arms or get out of bed. Because MG is unpredictable, I secure extra time in my schedule to allow for the unexpected.

This is the only way I can keep my word with clients. Instead of telling them, “I’m sorry, I got sick,” when it’s too late, I say upfront, “This project will take me a week because I might experience some health issues, and I don’t want to set an unrealistic deadline.”

Does this mean I always deliver on time? The answer is no.

I can never predict exactly how I’ll feel or how long an illness or flare-up will last. Sometimes I get short of breath, but I can still work. Other times, I wake up with heavy legs and can’t leave the house for days.

Adding three or four extra days to my deadlines helps me introduce my condition in a professional and objective way. It also prevents me from feeling like a victim when I need to explain delays. By addressing it at the start of a project, I make sure my clients understand my workflow so it doesn’t affect their performance.

What can we do?

We can’t change the unpredictable nature of chronic illness, but we can try to plan around it.

Although I’d love to keep my health issues completely private in a professional setting, I’ve learned that mentioning them early makes everything easier. Clients who have already seen my work don’t question my ability; they just need to understand that my process may look a little different.

Most of the time, I meet my deadlines. But there have been times when I miscalculated and had to deliver a project late. It’s frustrating, but I remind myself that this is just the reality of living with chronic illness — a reality we didn’t choose.

We can’t avoid it, so those of us with conditions like MG do what we can: plan, adjust, and hope that flare-ups don’t show up as uninvited guests.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.