Getting Diagnosed With Lupus As A Teen

August 17, 2022

To put it simply, it sucks to be in high school and have lupus; there is no way to sugarcoat it. What started out as a game of trying to touch my extremely cold feet to my parent’s legs and hearing them scream, has turned into an illness that plagues most aspects of my life. As a junior at an academically rigorous high school, I am finding it challenging to balance not feeling well with my immense workload.

I was formally diagnosed with lupus when I was in 10th grade, during lockdown. Starting my freshman year in high school, I began to experience a host of random symptoms. First, it was swelling in my eyes and constantly cold hands and feet. Then my whole face swelled, which was accompanied by a red “butterfly rash.” Next came a collection of strange and temporary rashes across my body, and overwhelming fatigue and headaches. I knew that something was wrong with me, and I was already sick of feeling sick. Little did I know, those were just the first of many days where I would barely be able to get out of bed.

It is hard to live with an invisible illness, but it is even harder to live with an invisible illness in high school that isn’t invisible to you. While my facial swelling was apparently subtle enough to go unnoticed by most, it became the only thing that I noticed when I looked into the mirror or saw a photo of myself. Just glimpsing the swelling or rash in the mirror made me feel infinitely worse. People would tell me that my rashy cheeks made me look like I was always wearing blush, but I couldn’t see it in a positive light. Being forced to attend school on Zoom for a year and a half turned out to be a blessing for me, ironically. I was able to turn my camera off and hide my insecurities from my classmates and teachers. I just wanted one thing: to feel normal again. I did not care what was wrong or how it would be fixed, I just wanted to feel better. Each time I went to the doctors, they took more blood to run tests, and each time I got results back that did not give a clear-cut answer, I cried. I was desperate for a diagnosis so that I could be fixed.

My final lupus diagnosis came after several long doctor’s visits, more than 50 vials of blood, gallons of tears, plenty of stress over missed classes, and many more days of severe discomfort. In many ways, I have been lucky so far–lupus hasn’t impacted my organs and my friends often tell me that they forget that I’m sick. But there isn’t a day that goes by that I forget that I have lupus. While my appearance might remain rather normal, there are plenty of days when I am simply unable to get out of bed in the morning due to fatigue or pain. I always worry that people around me won’t believe me when I tell them I have lupus, especially adults. I worry that my teachers will not understand why I missed my class or why I have to take a test late. Because my sickness isn’t always visible, I constantly fear that my teachers will accuse me of faking lupus as an excuse.

When I was prescribed hydroxychloroquine to combat my lupus, I was initially optimistic and thought that this medicine would put me on a straight path to feeling better. But I soon realized that the medicine would not provide the quick and easy fix that I was hoping for. I was shattered when I was told that it would take at least six months for enough hydroxychloroquine to build up in my system to make a difference. I did not want to wait six months to feel better; I wanted to feel better instantly. After about four months of taking the medicine, the only thing that had changed was my weight. My lack of appetite from the medicine accompanied by my strict anti-inflammatory diet led me to lose 12 pounds. My pants were falling off of me, I felt more lethargic than ever, and I couldn’t escape comments about my weight from friends and family. My doctor even thought she had misdiagnosed me and that I had IBS instead. This was infuriating, as all I wanted was to feel better and this felt like a major setback. Luckily, all of my stomach tests came back negative, and my lupus diagnosis was confirmed. I had never been so happy to hear that something was definitely wrong with me.

The next step was to wait it out and see if the hydroxychloroquine would start doing its job. This was not what I wanted to hear, but I had already learned that my wants did not have the power to change reality. Thankfully the medicine eventually started working, after 8 months, and I slowly started to look and feel a little better. My symptoms remained manageable with the occasional flare-up. I finally had what I wanted: I felt better.

Having lupus in high school still isn’t easy in any way. It is hard to balance my school work, my social life, and my chronic illness, particularly when I feel like I have to prove my illness because it is invisible. I have learned, though, to roll with the punches and make the best of the cards I’ve been dealt.

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.