How I Balance Work and Lupus
Last updated: August 2021
I’m 3 hours away from the end of my workday when I realized I’m in steroid withdrawal. Sweat beads on my forehead, even though I just turned up the AC. A slight tremor makes my hands shake. My stomach cramps. I’m exhausted, and my body aches as if I’ve just run a marathon. I try to focus on the screen in front of me.
As a long-time lupus patient, I always keep a prescription bottle of steroids in my medicine cabinet in case of a flare. When my fatigue level increased the previous week to the point where I was staying in bed until 1 pm, I started myself on 12mg of Medrol. Then, eager to avoid side effects, I tapered down a little too quickly. Rookie mistake.
As someone who lives with chronic fatigue every day, I'm extremely fortunate to have a job where I can sit down and where I can make my own hours. I started playing the viola at 10 years old and knew from a young age that I wanted to be a professional musician when I grew up. I feel lucky every day to be able to teach the instrument I love to my favorite people in the world. Still, maintaining a career while living with a chronic illness can be incredibly difficult at times. By sticking to the following rules, I am able to stay healthy while putting in my best at work.
I keep my schedule light
I'm not able to work full-time due to my illness. There are also times of the day, particularly mornings, in which I feel sickest. I make sure to schedule my work when I feel my healthiest and most productive. For me, that means working 3-6 hours 5 days a week from around 3 pm to 9 pm. The optimal amount of hours I can work in a week and maintain good health is 25 hours. Anything past 30 hours a week and I start to feel run down.
I chose a job that isn't physically demanding
I sit at a desk when I teach. The lessons I teach are one on one, which means less physical work than classroom teaching. Allowing myself to physically rest while my brain is working helps me to conserve energy.
I schedule vacation days throughout the year
According to the U.S. Travel Association, Americans left 768 million days of paid time off unused in 2018.1 Not me, though! I schedule a week off for Thanksgiving, 2 weeks off for Christmas, a weekend off in February, a week off in March, and usually some time off in the summer. These breaks, strategically scheduled throughout the year, give me time off to rest and recharge, helping me to avoid flares.
Occasionally, I do have to work when I'm sick
On these days, I rest after and try not to overdo it. I am someone who experiences lupus symptoms every single day. By necessity, I do have to work when I'm sick in order to support myself. On especially exhausting days, I make sure to rest after work and not overdo it.
I have a contingency plan in case of a severe flare
Every few years, I have a severe flare. I've had one life-threatening cerebritis flare that resulted in me missing almost a full year of work. I also recently had another flare that caused me to take off for a month to recover. I've learned to have a backup plan in case of emergencies like these. During both these instances, I've asked teacher friends to cover my students while I worked on my recovery.
I accept that I won't be perfect
Some days, if I'm tired while teaching or if I don't have time to check my email, I feel like I'm not giving enough at work. On other days, I might push too hard at work and feel guilty about risking my health. On these days, I remind myself that balance takes work and that the goal is not to be perfect but to be happy and healthy.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?