A Day in the Life of a Teen Living With Lupus

On a typical day, I wake up to my alarm blaring at 7:20 am.

Immediately, I hit snooze on my alarm clock. I have to leave for school at 7:45 am, so when my blaring alarm returns 9 minutes later, I try my best to get out of bed. But, this is not always easy for me. One of my main lupus symptoms is overwhelming fatigue, so sometimes it takes everything in me to get out of bed in the morning. If we’re being honest, most mornings, I have barely dragged myself out of bed at 7:35, only giving myself 10 minutes to get ready and out the door.

Pair my inability to get up with my 13-year-old brother’s inability to get himself ready by 7:45, and it is safe to say that the mornings are difficult. But somehow, I always seem to make it to school and into my first class on time, never without my hat to block my extremely photosensitive skin from the sun.

I sit through my morning classes as every other high school student does, besides the fact that sometimes I am extra tired, have a strange rash, or have a headache. Then it is lunchtime, which I honestly dread. Each time I eat, there is a large chance that I will develop some sort of stomach ache, facial rash, or swelling. While my friends get to eat whatever they want, indulging in chicken tenders, pizza, and dessert, I have to be extremely careful about what I put in my body. My lunch options are limited: Arugula salad with grilled chicken with no cheese, scrambled eggs with no butter or milk, and plain shrimp or steak tacos are my go-to’s. And then, of course, I have a coffee to get myself to my afternoon nap.

After lunch, I return to the classroom. At the end of the school day, I always try to do something to move my body, as I find that even 30 minutes of movement really helps my lupus. During golf season, I play golf every day, and the rest of the year, I either go to a workout class, hit golf balls, or simply walk my dog around the block.

When I return home, I get into bed and give myself time to rest. Somedays, this is short, and other days I end up taking a three-hour nap. Then, I once again force myself out of bed and try to do as much homework as possible. Normally I do the homework I have to do at my desk first, and then I crawl back into bed to finish up whatever I need to finish.

Next, it is dinner time. My medicine stunts my appetite, so dinner is not always an easy time of the day for me. But, each night, I try my best to eat a normal amount. On the weekends, I love going out to dinner with my friends and trying new foods. After dinner, I go back to my room and get into bed. I normally binge-watch a tv show or talk to my friends on FaceTime. Then, at around 11:30, I take melatonin and go to bed.

Every day is different, some days are easy, and some days are hard. But the thing is— I never know what my day is going to be like. When I experience a lupus flare-up, each day is challenging and different. Some days I have to deal with a terrible new rash or extreme aches and fatigue, while on other days, I feel completely normal.

By: Lexi Hamburger

Lexi Hamburger was born in Washington DC and now lives in Los Angeles. She is a junior at Brentwood School where she has attended classes since kindergarten. Her favorite activities include: academics, skiing, golf, tennis and community outreach. She was diagnosed with Lupus last year at the height of the pandemic, and is excited to participate with Lupus LA as a teen advocate.

For Lexi’s full lupus story, watch Season 2, Episode #12 of the #YourStoryOurFight Podcast at lupusla.org/podcast! You can also watch the full episode here, on Lupus LA’s YouTube Channel. Tap to stream Lexi’s episode directly from: Buzzsprout, Spotify, Amazon Music, Apple Podcasts or Google Podcasts!