When I was younger, people used to always compliment my skin tone. I would have so many family and friends tell me how no matter how long I would stay in the sun, I would never burn. I never used sunscreen and it would take me days to look like I even went into the sun. I spent most of childhood and teenage years at the beach. The sun was almost like my first love. I went on to fit the whole “beach bum” profile. I did live most of my life in South Florida, what else was I expected to do?
As I grew older, my dreams and love for the sun grew. I loved being by the ocean and could always find happiness there. If I ever needed to get away to clear my mind you would find me at the beach. One jump into that ocean and I felt brand new. I ended up wanting to become a marine biologist. I knew this was what I was going to do; I could feel it in my bones. Years went by and my ability to handle the sun started to fade, there would be unexplained rashes, and I always ended up in bed for days with the “flu.”
My abilities began to shift and so did my dreams. I ended up going less and less in the sun. I would miss the peaceful feeling of the ocean. Fast forwarding to a later time in my life, I was diagnosed with lupus. An autoimmune disease that can be triggered and flared up by the sun. But after research I saw some people with lupus were still able to go in the sun. I was thinking positive and told myself I was going to be one of them. Reality told me something completely different.
Due to lupus, today I cannot handle being in the sun. No, not even for more than a few minutes. I can wear a hat, sunscreen, stay hydrated and be completely covered, and still become sick. If I am in the sun for a few minutes in this heat I end up with dizziness, nausea and weakness like I am about to fall over. If I decide to stay longer than that, it gets ugly. I get the worst headache of my life, skin rashes and vomiting. The following days end up feeling like a “flu” but worse. I will admit that I believe my medication, methotrexate, does exacerbate sensitivity to the sun. But the combination of both means that the sun and I are no longer friends. We broke up.
When most people see me today, they make comments… “I didn’t know you could get that pale” or “You look sick.” Though I do not disagree with them, it still hurts. For me, there isn’t much else I can do. I have tried on multiple occasions and failed miserably. Because of lupus, “fun in the sun” is a thing of the past. On most days in the summer I must say “no” to all the fun outdoor activities. This means staying at home alone feeling punished for an illness which I did not choose. I do have hope that one day the sun and I can make up, but I’m not holding my breath on this. Unfortunately, this isn’t the first or last time lupus has or will dictate what I do with my life.