Photosensitivity literally means extra-sensitive to light. For some people with Lupus, that means that they might break out in a rash when in the sun. Some people are extra sensitive to fluorescent lighting. It can mean very different things for each person.
For me, when I’m exposed to direct sunlight, it causes an increase in inflammation everywhere. If I’m just exposed for a short time, say, 20 minutes, I might get a bit headachy and tired, but can recover by resting inside.
Longer sun exposure causes musculoskeletal inflammation, making my joints and body ache. I also get tummy problems and fevers from long sun exposure, and I’ll need to lie down in the dark to get rid of my headache.
Once, sun exposure caused a moderate flare.
To protect, I wear lots of hats, sunglasses, cover up, and exposed skin gets factor 70 sunscreen. I also sometimes get these reactions to indoor strip lighting, and “full-spectrum” daylight lamps.
I have a fickle relationship with sun. I love it, and it makes me happier, like everyone else, but it also makes myself. Ironically, I conduct research in one of the sunniest places on earth. One thing that I didn’t clarify in my original post was that UVA is the wavelength that causes Lupus inflammation, while UVB is what most people are protecting against when they wear sunscreen to avoid getting a sunburn. Whenever I am reapplying sunscreen in a group setting (and I have to reapply every two hours), there is inevitably someone (usually a white man) who will see the high number on the container and go out of their way to tell me, “You know that over SPF 30, all sunscreen is the same.” For UVB burners, that may be true, but I’m not using it just to keep from getting a sunburn. In order to effectively block the UVA that makes me sick, I need a broad-spectrum sunscreen with a very high SPF. I have actually been using SPF 100+ and 110 for the last two years, and it’s been amazing. That stuff kept me safe at the Dead Sea and Mitspe Ramon in the middle of the Negev Desert last year in March– which is the month with the most UV exposure in the northern hemisphere, by the way!
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 