An arm extended with a scene of the different phases of the sun rising and setting over water.

Sharing Experiences On Summer Sun, Outdoor Activities, and Lupus

It's estimated that more than half of people with lupus experience some form of photosensitivity. The UV light is found in sunlight and fluorescent lights. In addition to rashes, photosensitivity can cause joint pain, fatigue, weakness, headache, and fever.1-3

We recently surveyed hundreds of people with lupus to find out more about their symptoms and life with lupus in general. The results from our 2020 Lupus In America survey revealed that 57 percent of those who took the survey say they are unable to enjoy outdoor activities or sunlight.

We asked – You answered

As the weather warms up, many people are eager to enjoy the great outdoors. However, the sun and heat can make it difficult for people with lupus to fully enjoy the summertime.

We were curious about what is and is not possible for you during the summer, given the effect sunlight can have on lupus symptoms. Knowing what you shared in the In America survey, we asked our Facebook community: Are you still able to enjoy outdoor activities and sunlight?”

Nearly 100 of you shared, and where is what you had to say in the Facebook comments.

The sun can be a recipe for disaster

For many of you, spending time in the sun is a recipe for disaster, given the flare that follows. The sun and heat cause you to feel incredibly sick.

“I can’t be in the sun. I get a terrible rash, and I flare. I am so heat sensitive. If I get hot, I feel sick and like I’m going to pass out.”

“I can’t be out in the sun; it affects my skin too much. I start breaking out in a rash right away and itching. Sometimes I have to ice myself to cool my skin down fast.”

“Sun and heat cause me to flare, get nauseous, and have serious skin rashes.”

“Too many problems. As much as I love the outdoors it’s not worth it, and it’s more important to take care of myself.”

Tired of missing out

Many of you miss the outdoor activities that once brought you joy. It is hard to stay inside while family and friends are out enjoying themselves in the summer sunshine.

“I love the sun but it doesn’t love me – so tired of staying inside!”

“I miss the days when I could soak up the sun. It was so good for me and would always cheer me up. Now it just makes me feel awful.”

“My love of hiking and camping has been ruined.”

“I feel like I got run over by a semi-truck if I’m exposed to sun or heat. I miss doing activities outside.”

“It is nearly impossible to enjoy being outdoors. I hate turning down invites for outdoor activities. The sun used to feed my soul!”

“Cannot go outside. My life has come to a halt for everything I used to enjoy outdoors.”

“I miss getting to go fishing.”

Staying within limits

Some of you are able to enjoy limited time outdoors. Others mentioned that staying in the shade and having access to water also make time outside possible.

"We have a backyard pool and spa and have been able to swim and spa and play with our grandkids. I’m good with SPF 50 for an hour a day and then shade until after 4 pm."

“I can go for a little while, and that’s about it.”

“Shaded with a bit of sun is best.”

“I love how the sun feels on my joints. 15-20 minutes if I sit out. Working in the garden requires lots of breaks and a nap.”

“10-minute limit. Then I’m ready to lay down.”

“It depends on the air quality, and how humid and hot it is. Sunny with a little breeze and minimal humidity isn’t too bad for me.”

Finding the right time

During the height of summer, the mid-day sun can be intense. Many of you shared that going outside when the sun is not at its peak makes the outdoors doable.

“Walks outside are for early mornings and evenings.”

“Once diagnosed with lupus I don’t even consider going out at peak sunshine. I run errands, etc. either in the mornings or evenings.”

“First thing in the morning and later in the evening are the times I try to do anything outside, like walking. It just makes me too sick if I try and go out any other time.”

Thank you to everyone who shared responses for this story. We appreciate your support for one another.

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