Photosensitive, isn't it ever go away?

To the photosensitive lupies out there, who is too sick and effective by the sun and fluorescent light?

I'm just became extremely photosensitive 2 years ago, I feel I'm in probation of the heat and light from the sun. I can look but can't touch or feel it or will get hurt from it

I just wondering if I ever have a chance later to do what I used to do like normal people would do: go to beach, outside at the park or be on the pool ...

Is any of you was photosensitive at a time and get better later, at least not too sensitive with the UV from the sun and fluorescent lights?

Or I can only dream about it?

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2 Replies

  • I am photosensitive and it seems to get worse as I get older, especially when i am in a flare. I wear sunscreen at all times, even if I am staying in the house. (This was a little difficult in the beginning because it seems many sunscreens break me out in a rash.) I wear eye protection 24/7, even in when indoors. I have different sunglasses for day and night/indoors and outdoors. I wear sun protective clothing...always. There are a few companies online if you search for SPF or UPF clothing. The windows in my car are tinted to limit the Florida window tint pass will allow. If you dont have that, get it. It makes a huge difference. I have protective shields on the lights in my office to help block that light while at work. I am able to enjoy being outdoors with my family in moderation. They understand mommy needs shade and they help find it. I take an spf 50 umbrella with me everywhere I go. When I leave the house, I always prepare for "what if I have to be outside today". It is cumbersome but I know I need to take the precautions to stay healthy and out of a flare. I am able to go to parks, beaches and ride my bike with my family. It takes time to figure out the best routine for yourself, but you will and will be able to spend a little bit of time outdoors enjoying the beautiful Florida weather. I hope this helps.

  • I do think it's getting worsen in the long run, the body only gets older not get any younger to fight with the disease. That's why, I don't want to go outside even I really wanted. One cloudy day I decided to go to flee market (worn sunblock, long pants, sleeves and big rim hat...) the next day, I got flare and sick for the whole week to the point that I don't know if it's worth it to do it again or not.

    The limitation of these activities make me feel I'm a prison for my own sickness.