Patient Blogs | Lupus
Managing My Lupus Photosensitivity
photo of woman in sun admiring view from balcony

Because of my lupus, I experience photosensitivity. I have to be extremely careful in the sun, or I can feel very sick very fast. I experience joint swelling and pain, as well as general fatigue and weakness if I spend too much time in the sun. Over the years, I’ve figured out a few ways that I can protect myself from the sun and still enjoy being outside.

Sunscreen

It’s obvious, but I wear sunscreen all the time. Even when it’s cloudy or I’m just running outside for a quick errand, I make sure to put it on. I have a variety of different types – moisturizer with SPF (sun protection factor), invisible sunscreen that goes over makeup, body spray, and sunscreens with higher SPFs for when I’m at the beach or outside for long periods of time. In those instances, I reapply frequently even when I think I don’t need to. As a rule, I buy the highest SPF that is offered for all of my sunscreens and make sure that they have broad-spectrum protection.

UPF Clothing

I’ve recently started purchasing UPF (ultraviolet protection factor) clothing, and I don’t know why I didn’t do it sooner! I’ll wear it on a walk, at the beach, or in the car on long drives. I can admit that the options aren’t the most fashionable and tend to be expensive, but I’ve found some good options! My current favorites are a pair of moisture-wicking wide-leg pants, a light zip-up long-sleeve rash guard, and various beach coverups. I’m trying to expand my wardrobe and find some more options because I really do see a difference when I wear these items. Hats are also super important; I always wear a baseball hat or wide-brimmed hat when out in the sun.

Car Window Shade

I live in Southern California, so it is almost always sunny. When we go for a long drive, I am usually in direct sunlight. I bought roll-down window shades for the car so I have a little more protection on these drives. I keep one in my car and one in my girlfriend’s, so I know I’ll always have one. I’ve found that it really helps!

Sun Shelters

During the pandemic, I started going to the beach a lot more, which meant I needed to upgrade my sun protection. For my birthday, my mom got me a portable pop-up tent with UPF protection, which we have named “The Lupus Lounge.” It’s very light and easy for me to carry, and I feel very protected in it. For situations where we need a larger amount of shade, we recently purchased a beach canopy. It gives us a lot of space for beach chairs and multiple people to be under it at once. It also keeps the area cool, which is nice because I get overheated very easily.

When I was first diagnosed with lupus, I was afraid to do a lot of activities outside because of the sun, and I felt left out. I’m so glad I took the time to find the right products and tools for me because they allow me to enjoy activities outside safely without putting my health at risk. Being upfront with my friends and family about needing shade and being careful of the sun has also made a huge difference, and they make sure to accommodate my needs. Advocating for myself and my body is always worth it.

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Photo Credit: Peathegee Inc / Tetra Images via Getty Images

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Erica Lupinacci

Erica Lupinacci

Diagnosed since 2009

Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

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