The Sun, Lupus and Me

By Michelle99

1 min read

I loved being outside soaking up the sun. Feeling the warmth go through my body.

The sun is now my enemy

I was very young when I was diagnosed with Lupus. I was 8. It has affected my life more than I expected. Like being able to go outside and work in the garden like I used to love to do. Who knew that the sun could make you so sick. The doctors told me the sun would become my enemy. I can't enjoy the sun because it makes me very sick and I end up in the hospital. The heat is another enemy.

Missing out...

I know people that have Lupus that can be in the sun and heat. The funny thing is that I live in Texas where it's super hot in the summer. It's hard not being able to go to pool parties because I can't be in the sun. My doctor and my mom tells me to wear long sleeves in the Texas heat!! No thanks, I'll stay home. I miss out on a lot of family and friends because of Lupus. But I would much rather be at home and not in the hospital just because of the Sun.

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Cody Leach Member
<inline-mention username="Michelle99" user-id="4655125"/> I can hear from your post how difficult it is to not enjoy the sun's warm rays because of how painful and hurtful they can be. I can't imagine how difficult it is to miss out on all of the things that are going on either. I hope that there is some way that you can find protection from the sun, and enjoy your life in the sun to some degree. I do know that <inline-mention username="Ava Meena" user-id="2042408"/> has experience with photosensitivity. Perhaps she has something to add about this. She has written an article about this topic, and it might feel relatable to you: You can find that article at this link here: https://lupus.net/living/sun-sensitivity We also have some information on how to adjust to photosensitivity. I know you have said you tried to wear heavier clothing with longer sleeves, and that wasn't helpful. This article might have some other recommendations: https://lupus.net/sun-safety Thank you for posting. Hopefully there are some solutions to help you cope with the photosensitivity. Wishing you well, - Cody (Lupus. net Team Member)
Ava Meena Moderator & Contributor
 Hi <inline-mention username="Michelle99" user-id="4655125"/>, I can feel the pain and frustration in your story. When I found out that lupus meant I couldn't go out in the sun like I was used to doing, it broke my heart. Like you said, feeling the warmth go through my body was one of the best feelings in the world. How could the sun possibly be so bad? Even worse, when people find out I'm ill, they say I need to go get some sun and I'll feel better. It's like rubbing salt in the wound and it also hurts because it's an ignorant statement that makes me feel like people don't care to understand my disease. I can't speak to your level of photosensitivity, but I have found some success with UPF clothing and TONS of sunscreen. There are common brands of lightweight sun protective clothing, such as Coolibar, although I often look at clothes meant for fishing because they tend to all be sun protective and a little easier to find. I also occasionally cover myself thoroughly with sunscreen and enjoy the sun for about 20 minutes - it helps me cope with my sense of loss. Even when I'm careful I still feel a bit tired afterward, so I understand if you're sensitive then it may not be possible to do those things. But I'm happy to provide more recommendations on lightweight clothing if that would be helpful. Wishing you the best. -Ava, <a href='http://lupus.net' target='_blank'>lupus.net</a> team 
1. Michelle99 Member
 <inline-mention username="Ava Meena" user-id="2042408"/> My husband suggested the fishing clothes cause he wears them when he's outside fishing and other things. That's what I miss fishing just feeling the sun. I am pale but I have a porcelain complexion anyway. But I'm pale from no sun as well..I do have a large brimmed straw hat too. I just make sure I go out early as possible. The Texas heat is no fun anyway.☺️
2. Ava Meena Moderator & Contributor
 <inline-mention username="Michelle99" user-id="4655125"/> I totally understand! Nothing replaces that sun on the skin feeling. But the heat can also be very intense. -Ava, <a href='http://lupus.net' target='_blank'>lupus.net</a> team
Racquel H. Dozier Moderator & Contributor
<inline-mention username="Michelle99" user-id="4655125"/> I feel like not being able to be outside especially when it’s warm is so difficult. It’s definitely something that is so hard to deal with and adjust to. I too hate missing out. I know exactly how you feel. I have had to find times outside of peak sun hours to enjoy the outdoors like early morning. The adjustments have been hard. I am holding space for you to find ways to get a little of outdoor space to enjoy the things you used to. ~Racquel~ lupus team member
Christopher Reed Moderator & Contributor
<inline-mention username="Michelle99" user-id="4655125"/> I certainly understand. I lived in sunny Miami where there is nothing but sun throughout the day. I watched all of my college friends run to the beach, to football games, and to the pool every weekend while I tried to find other things to do. The beach is my favorite vacation idea. I now go to the beach late in the day. I look at it this way. As I settle on the beach as the sun goes down, I have the beach to myself. Christopher Reed, <a href='http://Lupus.net' target='_blank'>Lupus.net</a> Team member
Sheila Member
<inline-mention username="Michelle99" user-id="4655125"/> I'm so sorry that you have such a hard time with sun and heat. This summer has been particularly bad because of the extreme temperatures. I limit my time outdoors though I do have a furbaby so going out is something I have to do. I have transitional glasses, wear a light weight beach jacket and get back in as quickly as possible. I make decisions to go out for very special occasions but limit my time and exposure. I agree with you. Sometimes it's prudent to stay indoors if you think the issues aren't worth the risks. Take ❤, it's almost sweater season! Blessings!!

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