Living with Lupus | Asia's Journey of Strength

In this interview, Asia Renee, a 12th-grade student with lupus, talks about her experience living with the disease. She shares how she first found out she had lupus, the challenges she faced, and how it has affected her life. Asia also discusses some common misunderstandings about lupus and gives advice to others who are dealing with it. Her story is a powerful reminder that even though lupus can be tough, there is always support and ways to take care of yourself.

1. How did you first learn you had Lupus?

I first learned that I had lupus in December 2021. Initially, neither my mom nor the doctors knew what was wrong with me. It took two months of testing before they finally figured it out. Before my diagnosis, I experienced frequent illnesses, random headaches, stomach aches, the flu, and increased body pain, symptoms I dismissed as minor issues.

2. What challenges did you face adjusting to it?

Facing my condition meant adapting to many challenges, including taking medication, which was a big change since I’d never taken pills before. I also had frequent hospital admissions, sometimes lasting two weeks, which made my freshman year of high school incredibly short and disruptive. This eventually led to home instruction due to my physical limitations. Being on a dance step team added to the struggle, as I had to practice via Google Meet and complete all my work online. I dealt with isolation, weight gain from the medicine, and later rapid weight loss when the medication was stopped, which only heightened my insecurities as a teenager. Additionally, lupus forced me to avoid the sun, so I always had to wear a hat, seek shade, and apply sunscreen.

3. What’s a common misconception about Lupus?

One thing I will say is that not many people know much about lupus. Although it’s a disease that often comes up in conversation, most people don’t really understand what it is or how many individuals live with it. In reality, lupus is more common than many realize. Another misconception is that since lupus is a “disease,” many people think it is transferable or contagious, which it is not.

4. How does it affect your daily life?

Lupus affects my daily life. Even though I’m slowly getting better, I often feel lightheaded, dizzy, and experience headaches, foot pain, and shortness of breath, especially when navigating school stairs. At home, I must carefully manage my medications, ensuring I take them on time. Some days, I even miss events because I need to be admitted to the hospital or attend a treatment or checkup.

5. What’s your message to others with Lupus?

My message to others who have lupus is: If you feel comfortable, speak up about it. Although lupus can present many challenges, it’s important to remember that there is support available, and you are not alone. Along with the medical treatments prescribed by your doctors, consider embracing lifestyle changes that promote well-being. Simple adjustments, such as maintaining a healthy diet, drinking plenty of water, and engaging in gentle exercise, can truly make a significant difference in managing your symptoms.

By sharing your experiences, you not only help to break down the stigma surrounding lupus, but you also create opportunities for mutual support. Opening up about your condition can lead to advice, encouragement, and a sense of community that can help you navigate the ups and downs of living with lupus. Also, remember that managing lupus isn’t just about medication, it’s also about taking proactive steps toward a healthier lifestyle and finding balance in your daily life.

Asia's story highlights the strength and determination it takes to live with lupus, especially as a teenager. Despite the challenges, she shows that with support, self-care, and the right mindset, it’s possible to manage the disease and stay positive. Her message encourages others with lupus to speak up, take care of themselves, and never feel alone in their journey.