Made in the Shade

Did you know that 50-75% of systemic Lupus patients have a photosensitivity to sunlight? I used to be in this category, and it was a real bummer. After about 20-30 minutes in the sun (even with a ton of sunscreen on), I would experience flu-like symptoms, including but not limited to fatigue, joint pain, and a slight fever. Depending on how intense my sun exposure was, I might also have swelling in my hands, knuckles and wrists. That's in addition to a sunburn and maybe a little heat rash! At the beach, I used to huddle up beneath a big umbrella, covered from head to toe in long sleeves, pants, beach towels and a big ole' floppy hat, terrified that even one inch of me would be exposed. You can understand why I might not spend my days lounging in the sun!

About a year or so ago, my photosensitivity seemed to subside, in correlation with my disease inactivity. How relieved was I to be able to enjoy the outdoors again, with no worry of going into a mini-flare! I still wear sunscreen every day, and I almost always choose shade over bright sunshine. It brought me great joy to spend almost two hours romping around in the swimming pool with my two nieces during a recent family vacation. Experiencing freedom like that reminds me why I've worked so hard to keep my disease under control.

How can you still enjoy the great outdoors without risking a flare? Try out the Columbia brand photosensitive clothing at Alex & Me Company, or pick up some Rit Sun Guard UV Protectant on Amazon.com. Add a box to your next load of laundry, and your clothes will be UV protected for several washings. It's not a permanent solution, but it's sure to help during the sunny summer months ahead. (Be sure to follow specific instructions on the box.)

I also invested in a slew of 3/4" or full length sleeve, lightweight shirts to round out my wardrobe. Combined with cool, summery long pants, I was confident that I could at least unload my groceries from cart to car without risking too much exposure. Tack on a hat, make sure your moisturizer has SPF, and you're ready to take on the rays.