https://resources.lupus.org/entry/living-an-active-life-despite-lupus

personal story

Living an active life despite lupus

Lupus Foundation of America

Resource Content

Being diagnosed at the age of five with discoid lupus meant a childhood filled with doctors telling me what I couldn’t or shouldn’t do. They were concerned about what I ate, what outdoor activities I should participate in, and how much time in general I spent outside, because they believed all of this inadvertently worsened the scars on my face. I hated the possibility of the scars spreading, which felt like they were lurking behind every playground and sunny day. The doctor visits only increased as I grew, and at 22 years old I received the diagnosis of systemic lupus. I was told that I needed to limit my time outdoors. One doctor jokingly told me to become a vampire. I lived in perpetually sunny Los Angeles. How could life exist if I didn’t go outside?

I didn’t know what the life of a vampire was like because I spent my childhood running outside. Beaches, trails, tracks, you name it and I probably ran it at some point. My parents did their best to modify my life but it was difficult. Hiking without sun? That didn’t seem like a likely option. It also didn’t help that I was so angry at the lupus itself for forcing me to make these changes. I wanted to live on my terms, and that meant attempting to ignore lupus. Regardless of my best efforts, I had to change the way I viewed myself and ultimately the disease.

Instead of spending an entire day at the beach, my friends and I would go at night. We listened to the waves crashing into the shore without the guilt of sitting under the southern California sun. Each time I saw others riding bikes during the day or playing beach volleyball I cringed. It wasn’t fair! I wanted to do those things too, and do so without any guilt. That’s probably the toughest aspect of lupus is the guilt that consumes you when doing something you know you should not be doing. But, I was determined to make it work. 

With age came some wisdom (and Google)! With a little research I discovered clothing that has built in ultraviolet protection factor (UPF). I found that hats aren’t as ugly as I initially thought. I began purchasing clothing with UPF and kept a medicine cabinet stocked with sunblock. Although I hate wearing it, I’ve finally found brands that I like (I have tried what seems like hundreds). If I want to go hiking, I go, but I am smart about it. I slather on the sunblock, wear protective clothing and always wear a large brimmed hat that also has UPF. Taking the extra time to prepare for the outdoors allows me to still enjoy that part of my life. Lupus will not be the reason I change who I am, nothing can do that.

Throughout the years, as a child and now an adult, I’ve managed to maintain an outdoor lifestyle. Lupus gives and it takes away, but for now, I’m living the life I want to live—despite lupus.