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photosensitivity

Sun-kissed

Oh no...summertime! The sun is hot and burning. It is the season for the beach and sun-bathing. It is the time of the year when most people are really excited. Why would anyone say "oh no?" Well, have you ever met anyone who has been diagnosed with lupus?

Lupus is an autoimmune disease that for unknown reasons causes one's immune system to attack the body's own organs. Any of the body's organs may be affected but most often the joints and skin. According to the Lupus Foundation of America, one half to three fourths of people with lupus have adverse reactions to the sun, which may result in an itchy rash, lesions or sores, and which can aggravate other lupus symptoms, such as joint inflammation and fatigue. This adverse reaction, or photosensitivity as it is called, follows from a complex process where the UV rays, primarily UVB rays activates a particular cellular reaction.

Time to gear up to go outside. Here we go: start with at least SPF 70 on your face and entire body. Don't forget to get the areas between your fingers and your feet. Grab that large sombrero-like hat, and find that loose-fitting long-sleeved shirt that you are praying you will not sweat through. You think I am joking? Nope. This is what people who live with lupus have to deal with when the sun is high and mighty, unless they are feeling risky on a certain day, and trust me there are many people who might be feeling risky. And even sometimes one may take all the precautionary steps and they get home at night and--oh darn there is that itching and burning red rashy thing on the little part of my wrist that I did not cover, or maybe even on parts of the body that were covered. Yes this is more than annoying and sometimes the frustration is enough to make one say, "hey I love the feeling of the sun on me and I am going to tan in the middle of the day" or maybe even less extreme, "oh so I forgot to spread the sunscreen on today, no big deal." Sometimes people may just want to forget that they have to deal with this annoying chronic illness and want to enjoy the sun like everyone else.

Initially when one is diagnosed with a chronic illness there is an element of denial. Eventually, most people who have been living with the illness for a while come to accept the changes that have come with the disease. However it is not always so black and white; even people coping with a chronic illness for years may fluctuate between denying the adjustments that their illness requires of them and accepting that they can live a high quality life despite having to deal with a chronic illness. As for lupus, think about it...who should really be sitting in the sun without sunscreen or even with sunscreen if it is midday. We all know about skin cancer and even early age wrinkles. Avoiding direct sunlight does not mean you can never enjoy the sun or the outdoors, but rather you can experience them and well. Options: you can sit and tan at noon for 2 hours and risk a week's worth of suffering or you can cover up, wear a hat, and sit in the sun in the late afternoon and know that the odds of any negative reactions are really low. You can take in all the beautiful surroundings, like the trees or the ocean or the people walking by, and you can feel alive as you observe all the life around you. And if you have lupus, you probably know that sometimes you are still more likely to get tanned faster than everyone else.

You don't need a sun burn, a sun rash, or a sun scar, just get a quick sun-kiss. Allow the sun to kiss your skin and then run away leaving it begging for more. Maybe if the sun is nice and kind to you, you will come back another day and let it kiss you once more. And just like people will treat you the way you allow them to treat you, so will the sun, so protect yourself. At most you will be left with a tiny red mark on your skin; a sign that you were smooching for a little too long. You just have to see this all in a different light... and not U.V.