How I Get Around My Sunlight Sensitivity
I hadn’t experienced sensitivity to ultraviolet (UV) rays until this year, despite living with lupus for the past thirteen years. I’ve learned that lupus symptoms can change and evolve over time. For example, I didn’t experience joint pain or have a butterfly rash until eight years after I was diagnosed.
Temperatures in my home state of Texas can rise enough to fry an egg on the sidewalk, and stepping outside can feel like walking into an oven. So much so, that once a woman in my city literally baked bread outside using her mailbox. Having lived in Texas all my life, I thought I was used to the heat.
Then one week, I woke up exhausted for the fifth day in a row. Still groggy, I glanced at my watch. It was noon, and I’d just slept for twelve hours straight.
Sensitivity to sunlight
I’m used to feeling tired a lot of the time. But this summer I realized I’ve been exhausted nearly every day. Because I don’t develop skin rashes from UV light, I didn’t connect my increased fatigue to sunlight. However, after eliminating other triggers, like stress, waking up too early, and staying up too late, I finally put two and two together.
Sensitivity to sunlight is another symptom that I’ll have to learn to manage. Here is what I’ve done so far to limit my exposure to the sun:
Limiting sun exposure with lupus
Consolidation
I consolidate errands and outdoor activities into a single day.
Rather than deal with sun exposure every day, I try to take care of all my outdoor errands in one day. I place and pick up my grocery order, trade in books at my local used bookstore, and get coffee with friends all in one day. I’ll feel exhausted for the rest of the day, but I’ll mostly recover after a good night’s sleep.
Sunglasses
I wear sunglasses.
Wearing sunglasses mostly eliminates the nausea and dizziness I feel from being out in the sun. The sunglasses you use don’t have to be fancy; I bought my current pair a few years ago for about $12.
Utilize the Internet
If I go out to eat, I google pictures of local restaurants, then choose one without too much natural light.
While sun-drenched tables in cafes are cute, sitting at one will leave me exhausted and nauseous. Before I choose a restaurant or coffee shop, I now look at pictures of it online. Are there lots of windows? Are the windows covered? Is there seating in the back of the restaurant away from any windows?
Tinted windows
I paid to have my car windows tinted with special ceramic UV-ray-blocking film.
Window tinting is expensive and therefore unfortunately not a viable option for everyone living with sun sensitivity. It was a bit of a stretch for me to afford it. However, as a musician who often travels for work, I spend a lot of time in my car. When I arrive at a gig, I need to be well enough to perform.
Adjust my personal style
I wear a wide-brimmed sun hat.
At first, I was self-conscious about wearing a hat when no one else was. Then one day I was running errands wearing a black dress, sunglasses, and an oversized straw hat when a woman stopped me to tell me I looked like Audrey Hepburn in Breakfast at Tiffany’s. I caught a glimpse of my reflection on a glass door. To my surprise, the woman staring back at me looked classy, sophisticated, and even slightly mysterious.
The stranger’s comment was a reminder that often, we are too critical of our own appearance. Where I saw a disease that had imposed on my personal style, the people around me saw someone who was stylish and classy.
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