Scheduling My Life Around Lupus

When I first became sick at 21 years old, I was an active person balancing a job and my first year of graduate school. I would often study until late at night, wake up early for class, then stay out late with friends. But with lupus came crushing fatigue and muscle weakness. I felt like a young person trapped inside an 80-year-old body.

Lupus is life-changing

For many patients, being diagnosed with lupus means making small changes to their lifestyle. They might start taking medication every day, rest more often, or need to avoid the sun. For others, like me, being diagnosed with lupus is life-changing. The diagnosis requires not just a few minor adjustments, but an entirely different lifestyle. Many patients with severe lupus may have to quit their job or find a new, less physically demanding career. They might struggle each day with pain or fatigue. Patients with severe lupus often find that their diagnosis upends their life and affects them on a daily basis.

Lupus denial

I spent the first few years of my diagnosis fighting the new restrictions lupus placed on my life. I still tried to stay out late but found that I felt so sick by the end of the night I could barely drive myself home. If I went shopping or out to lunch with friends, exhaustion would keep me in bed for the rest of the day after. But mornings were always the worst. I’d drag myself out of bed at 9 am, determined to have a productive day. However, I was too fatigued and nauseous to do much more than slump on the couch clutching a coffee mug as if it were a life raft. Even though I believed I was being productive by getting up early, I began to see that I was losing many hours of my life to exhaustion and pain.

It took me much longer than it should have to learn to pay attention to my body’s new needs. When I started to listen to what my body was telling me, I noticed a pattern. No matter how much sleep I got the night before, mornings always felt like running a marathon wearing a backpack full of bricks. Why not just skip the worst part of the day? I reasoned. So I turned off my alarm clock. I set aside my need to be productive. I began to stay in bed until my body decided it wanted to get up.

Learning to schedule my life around lupus

At first, scheduling my entire life around my disease felt depressing. I wanted the freedom to walk around the mall with friends, to go out for breakfast, to work full-time in my career. But I couldn’t deny the benefits of sleeping in and resting when I needed to. Within weeks, the fatigue had loosened its vice-grip on my life. Ironically, relinquishing control over my schedule gave me back my life.

Over time, I was able to gain much more control over my life and my disease by making drastic changes to my daily routine. I learned to brush aside society’s expectations for people my age. Maybe I would never work full-time. Maybe I’d never be the type of person who jogged around the neighborhood in neon activewear at 8 am. Maybe I wasn’t the type of person who would jog at all unless I was chasing my next cup of coffee. But maybe a normal schedule that aligns with the rest of society is overrated.

On a typical day, I fit in a few hours of work at my teaching job, walk my dogs, read part of a novel, and write. I do this despite waking up at 11 am and going to sleep at 11:30 pm. I’ve realized that there are advantages to a shortened day. Instead of cramming cleaning, exercising, work, writing, and returning emails and phone calls into 24 hours, I’ve accepted I just won’t get to everything. When you’re only awake 12 hours, you quickly discover that not everything “normal” people do really needs to be done. I might never have the cleanest countertops on the block, but I always make sure I set aside time to play with my dogs or text a friend. Maybe lupus has stolen my ability to have a normal schedule. I wouldn’t mind more hours in my day. But 12 years after my diagnosis, I’m realizing a “normal” schedule was never the point of life.