It Is Hard to Have Fun in the Sun With Lupus

Throughout my life, one of my all-time favorite sensations has been feeling the warmth on my skin from rays of sunshine. I love feeling warm from head to toe. Growing up in the southeastern USA, I’ve spent many summers in the sun.

Learning to fear the sun

Unfortunately, I no longer rejoice when I feel the sun hit my skin. In fact, what I feel is more like panic – because I know that the UV rays are causing damage to my cells and setting off a process that can lead to a lupus flare.^1,2

Lupus photosensitivity has robbed me of that happy, bright feeling I used to associate with sunlight. It’s been one of the hardest things for me to deal with. I have accepted the medications, the slower pace of life, the aches and pains, the doctor’s visits, and so on – but giving up my time in the sun? It’s the only thing I’ve rebelled against.

Lupus photosensitivity and UV exposure

I experienced lupus photosensitivity for the first time after I started a medication that can cause it. I held out hope that maybe I was part of the nearly 20 percent of lupus patients that aren’t sensitive to UV rays.³ I tried to stop the medication, with my doctor’s permission, but I got far too sick and had to restart it.

I may never know if it’s inherent or just a side effect of my meds (many lupus medications can cause photosensitivity). However, exposure to UV light can cause significant lupus activity even if you don’t noticeably flare immediately afterward. So I need to practice sun safety regardless.

Trying to practice sun safety

After my diagnosis, I practiced radical sun protection. I got a permit to tint the windows on my car so that I got less exposure while driving. I stashed sunscreen everywhere, and I’d put it on just to go to my local department store because of their uncovered fluorescent lights, which emit UV rays.⁴

I wore long sleeves, sought shade, and generally avoided going into the sun when the UV index was high (from 10 am to 4 pm, with the peak intensity occurring in the middle of the day). But these practices soon became tedious. I found myself getting angry that a previously simple afternoon walk now required sunscreen, a hat, UPF clothing, and sometimes even an umbrella.

I don’t know how to balance my love for being outside with my abhorrence for smelling like sunscreen and my apprehension about causing a flare. I just want to have fun in the sun without all the pressure and worry. Is that so much to ask?

A lifetime of adjustments

It was much easier to follow the rules in the beginning. I wanted to feel better and I tackled sun safety wholeheartedly. It’s the length of the battle that made me falter – and yet it’s only been 3 years since my diagnosis. So how am I going to keep this up for the rest of my life?

There have been things that helped: joining a support group, accumulating more UPF clothing (therefore minimizing the personal battles with sunscreen), and occasionally allowing myself a short, guilt-free sunbathing session. But I know that this is a problem I’ll have to continue to face and figure out how to overcome.

What lifestyle change did you find to be the hardest with lupus? And how do you manage to stick to it?