How Photosensitivity Changed My Life (Plus 2 of My Favorite Wearable Products)

Marisa Zeppieri avatar

by Marisa Zeppieri |

Share this article:

Share article via email
Langerhans cells, bully, live with lupus

I remember the first time I learned about photosensitivity and how the blazing South Florida sun was affecting my disease state. For more than 20 years of my life, I lived in Fort Lauderdale, where almost every single day is hot and sunny, and often humid. Though my original diagnosing rheumatologist never mentioned sun sensitivity in our appointments, when I heard about it at a local support group, I instantly had answers to so many lingering questions.

Though I was diagnosed at 23, my mother and I can remember me having strange reactions after being out in the sun even as young as 9. It was hard to be the only kid in a group of friends who would break out in a mouthful (and sometimes noseful) of canker sores after spending a few hours at the beach or riding my bike near my home. The sun was almost impossible to get away from in South Florida, and because both my mother and I had never heard about photosensitivity, we thought surely something else was causing my strange symptoms.

In addition to the sores, I would get severe rashes on my body, eczema, and fevers after particularly long bouts outdoors. As I reached 18, I greatly reduced my time at the beach or outside with friends, because even though I wasn’t diagnosed yet, I knew something didn’t feel right after being in the sun. After my diagnosis, and over the past 17 years as my disease state has worsened, photosensitivity became an even larger issue. Even just five to 10 minutes in the direct Florida sun could spiral me into a major flare.

I felt trapped in my home, unable to go outdoors to do errands or see friends until after 7 or 8 p.m. Getting into my car in the summer in Florida, when interior car temperatures would hover around 100 degrees, was an impossible task. These limitations became so overwhelming over the years that my husband and I made the decision to pack up and move north near the Canadian border, leaving friends and family behind.

If photosensitivity is new to you, it basically means a sensitivity to UV light, either from the sun or indoor fluorescent light bulbs. Not all lupus patients will experience photosensitivity, though a recent study on Lupus Foundation of America‘s website conducted by Victoria P. Werth, MD, revealed that 83 percent of lupus patients reported having some form of light sensitivity. It is also considered a major symptom of lupus, and patients can experience fevers, rashes, fatigue, increased joint pain, mouth sores, and increased disease activity after exposure.

Many people have asked if my move was worth it. I tell them, “Absolutely.” Though most of our friends and family members prefer the heat, my husband and I love the cold weather. Near my home in western New York, the sun is not very strong, and I am actually able to venture outdoors for up to an hour in most cases to go for a hike or visit a local farm to pick fruits and vegetables.

I would never have been able to do those things in Florida, especially for an hour. I also feel better in the cold weather and have fewer fevers. In fact, while I had a fever almost every single day in South Florida, I typically have only experienced them one to two days a week now. I still limit my time outdoors in the summer, and only typically hike in the fall, winter, and early spring. In addition to limiting overall time outdoors, I have added a few photosensitivity-related wearable products to my wardrobe.

Here are two of my favorites:

Shade: You may have heard me talk about the Shade sensor in the past, but I bring it up again because it is truly an incredible product that offers great insight into our body’s reaction to the sun and other UV light. The sensor can clip onto any top or jacket you are wearing and connects wirelessly to an app on your phone. During the day, the sensor will measure the amount of UV light you have received. You can also track daily symptoms through the app, and over time, this intuitive device creates a threshold of how much sunlight you can get before experiencing an increase in symptoms. You can learn more about the device here.

Coolibar: Coolibar has quickly become one of my other favorite wearable products in the fight against UV light. From adorable tops and bathing suits to wide-brimmed hats and dresses, their fabrics offer UPF 50+ protection. This is the highest protection rating clothing can have, and it means that only one-fiftieth of the sun’s UV rays are able to reach your skin rather than 50/50. You can find their awesome clothes here.

Two of my favorite Coolibar products: their rash-guard bathing suit and wide-brimmed hat with UV protection. (Courtesy of Marisa Zeppieri)

How do you stay safe in the sun? Tell us about it.


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.