Summer, the time when most people wait all year for. Counting down the days until the end of school and until the pool opens. When you can’t wait to sit outside in the sun without a coat until at least 8:30 pm. As a former teacher, I used to be one of those people too. Then lupus dramatically changed my relationship with summer for good.
My name is Racquel, I’m the founder of Lupus In Color, and I’ve lived with lupus for over 22 years. In that time, I have learned that summer is NOT the season of freedom for me. It’s the one season that I must plan for most methodically. The heat, the sun, the humidity, all of it works against my body. It gives me a new definition to my “summer body” and with that definition, I’ve learned lupus can’t force me to live inside from May to September. Ultimately, it means I just have to be smarter about how I move through the season.
This is what my “summer body” really looks like with lupus, let me tell you how I get through it year after year.
Why Summer is So Hard on the Lupus Body
If you don’t have lupus, it is hard to understand when someone with lupus states that they are allergic to the sun. It is difficult to fathom that instead of summer feeling like a treat, it feels like a threat. People don’t really understand what lupus is. Lupus is an autoimmune condition, which means my immune system attacks healthy parts of my own body. Imagine that an immune system built to protect my body attacks everything in it mistaken it all as foreign objects. And, the sun, the heat and barometric pressure can trigger flares, or attacks on the body.
What Causes Sun Issues?
Photosensitivity is one of the most common lupus symptoms. It affects approximately 40-70% of those with lupus. This means that sunlight, including UV rays that come through windows and clouds, can cause skin rashes, fatigue, joint pain and even full lupus flares in those who are sensitive to it. The heat alone can wear down a lupus body, increasing fatigue and inflammation even without direct sunlight exposure.
So, when the temperature climbs, my body isn’t just the hot looking summer body, it is uncomfortable and under stress. Unfortunately, that stress can show up as a rash across my face or arms, swollen joints, pounding headaches, or days of exhaustion that sleep never fixes. Summer causes my immune system to work overtime, and I’ve had to learn how to protect myself from the season that everyone looks forward to.
The Moment I Realized Summer was Different for Me
I remember the exact summer when I stopped taking sunny days for granted. It was a beautiful day, and I was away on vacation with my family. We went swimming, walking, and had a magnificent time. I took breaks indoors where there was air conditioning when I felt too hot and found shade as much as possible. But, by the end of the night, my body was filled with hives, my lupus butterfly rash was clearly on my face, and my joints were so swollen I couldn’t even hold a fork.
I realized this was my body telling me that summer and I were going to have a complicated relationship from then on. It took me so long to stop feeling angry about my body betraying me like that. In fact, I felt like lupus stole my summer that year. Despite this, I had to realize that lupus didn’t take it away it just changed the rules that I have to play by.
5 Ways I Protect My Skin From Lupus Sun Flares
Sun protection is not an option for me. It is part of my daily routine, rain or shine, every single day of the year, but especially from late spring through early fall. Below is what works for me.
First, I wear broad spectrum sunscreen every day. I look for SPF 50 or Higher and usually go for SPF 100. Most times I’m looking to make sure the sunscreen as UVA and UVB rays protection. I slather it on all my exposed skin. This is usually my face, neck, ears and hands, even if I’m just running short errands. From experience, I’ve learned that UV rays do not care if I am outside for a few minutes or five hours to affect me.
Second, I cover my skin instead of relying on sunscreen alone. I wear lightweight, long sleeve shirts and pants with UPF +50 (Ultraviolet Protection). Then I throw on a wide brim hat to keep the sun off my face and neck, also UPF+50. Finally, I wear sunglasses with UV protection to guard my eyes which for me are also affected by lupus.
Third, I avoid going out in peak sun hours whenever I can. Between the hours of 10 in the morning and 4 in the afternoon, the sun is at its strongest. If I have any plans outside, I try to schedule them for early morning or in the evening when the sun has begun to set.
Fourth, I check the UV index before I plan my day. I have a UV index tracker on my smart watch and most weather apps that I use share that information. If the UV index is high I know to stay inside or cover up fully when I go outside.
Finally, I keep my car and home as shaded as I can. The window tint on my car is darker to block out the sun and I have UV blocking tint on my home windows. I’ve even changed my lights to LED lights because they do not emit UV rays like fluorescent or halogen lights can. These steps have made a real difference. Many people don’t realize the sunlight coming through your windows and from your light bulbs can still cause serious flares. Now, I make sure my indoor spaces are set up to protect me too.
Managing Lupus Heat Intolerance and Humidity
I have learned that the sun is only part of the problem. Heat on its own can wear my body down just as much. Here is how I handle the heat.
- I stay hydrated all day, not just when I feel thirsty. By the time I am feeling thirsty, I know I am already behind on being hydrated. I keep a water bottle with me and sip throughout the day and eat hydrating fruit like watermelon or vegetables like cucumber.
- I dress for temperature control, not just style. Loose, light, breathable fabrics like cotton, linen, or sweat wicking have been my go to. They help my body regulate the heat better than synthetic materials.
- I use cooling tools when I need them. A cooling towel, a small handheld fan, or even a damp cloth on the back of my neck help to being my body temperature down quickly.
- I limit my time outside, even if I’m in the shade. Shade helps for sure, but it doesn’t fully protect me from the heat. If I am outside for an event, I set timers to check in with my body and take a break to go indoors or in a cool car.
- I pay attention to humidity. Checking the humidity tells me if I need to just stay in or take a chance and stay outside for a short period of time.
Listening to my Body Instead of Fighting it
One of the hardest lessons lupus has taught me is listening to my body. I had to learn that pushing through is not always the best thing to do especially in the summer. Getting honest with myself about my limits was difficult.
If I wake up already feeling tired or achy, I know that is my body asking me to slow down, not push through. I’ve learned to say no to plans that would have felt easy for someone without lupus to handle. But, for me it would of cost me a few days of recovery. Saying no hasn’t always been simple, and it can be so isolating as you see others carefree and enjoying the season.
I’ve had to remind myself that resting today means I get to show up for the things that matter most tomorrow. Pacing myself has taken a lot of practice, but it is what allows me to live a well life in spite of lupus.
Planning Ahead Instead of Reacting
When I was first diagnosed, summer used to catch me off guard. Every single year I’d be stunned at how sick I would get. I finally had to start planning for the season the way I would plan at a full-time job.
Now, before the season even starts, I speak with my doctor about my summer plan. We review my medications, talk about any adjustments that might help with the heat and sun sensitivity, and make sure I know the early warning signs of a flare so I can act quickly instead of waiting until things go awry.
I also plan my calendar a bit differently. In the summer I try not to schedule too many outdoor commitments back to back. When I know big events are coming up, I try to build in rest periods before and after so my body has room to recover.
Having a proactive summer bag packed also helps. My summer packing usually includes sunscreen, a cooling towel, water, my medication and a small umbrella for shade if I end up somewhere without a covered area.
Being prepared has saved me a lot of stress.
What I Eat and Drink in the Summer to Prevent Lupus Flares
Food and hydration play a bigger role in my summer routine than many realize. What I put into my body during the hottest months either helps me manage lupus or adds fuel to a flare.
- I lean on water rich foods. Watermelon, cucumber, oranges and berries help keep me hydrated in a way that plain water can’t. They also feel refreshing on days when the heat kills my appetite.
- I try to eat lighter meals during peak heat. Heavy, greasy meals often leave me feeling sluggish and sluggish is the last thing I need to be feeling when my body is already fighting. So, I aim for meals with lean protein, leafy greens, and healthy fats that keep me full instead of weigh me down.
- I limit alcohol and sugary drinks. Both can dehydrate me, and that dehydration can my flares worse. A cold glass of water or an unsweetened iced tea or water with lemons and cucumber are my go to.
- Electrolytes are helpful. On days when I am sweating more than usual or spending time outside, a low sugar electrolyte drink helps me replace what my body loses. This helps with any dizziness or headaches that used to catch me off guard.
I know this is a lot but, all of this doesn’t mean I never enjoy a summer treat. It just means I am more mindful about how food and drink affect my summer body that struggles to find balance.
Leaning on my Community
I didn’t learn any of this on my own. Although my own experiences helped me know my body, so much of what I know about surviving lupus in the summer came from other butterflies in the lupus community and beyond. Some have walked this journey and have been generous to share.
There is something powerful about talking to someone who understands why you just canceled plans you made 4 months ago. No long explanation is needed, it is just completely understood. Community has taught me different products to try, new ways to advocate for myself with doctors, and new ways to give myself grace on the days that summer wins.
If you are newly diagnosed or still learning how your body responds to heat and sun, I encourage you to find that kind of community for yourself. Whether it’s an online support group, local meetup, or simply one other person who gets it, you don’t have to figure summer out by yourself.
Finding my Joy in the Summer Anyway
I want to be completely honest. Summer will probably always be harder for me that it is for people without lupus. But I have also learned that hard does not mean totally impossible.
I’ve found ways to enjoy the season without putting my own health at risk. I am in love with early morning walks before the sun gets too strong. Inside gatherings are fun especially with air conditioning. Seeing the sunset from my porch or on a beach has been amazing.
Summer with lupus has taught me to slow down and be more intentional with my time. I used to see that as a loss. Now I see it as a beautiful mindful way to live beyond lupus.
A Message to Fellow Lupus Warriors Struggling This Summer
If you have lupus or any chronic condition, summer can feel like a fight instead of a season that you can enjoy. I want you to know you aren’t alone in that feeling. So many of us feel the same weight when the sun is out, and the temperature rises. It’s not in your head, and it’s not something you have to push through in silence.
You are allowed to say no to plans that may put your health at risk and not feel guilty. In fact, you are allowed to leave early, skip beach day, and choose air conditioning over an outdoor event. None of that makes you selfish or weak. It makes you someone who has learned how to take care of yourself in a new hot summer body.
Summer with lupus is not about giving up on the season. It is about learning your body limits and then leaning on new rules and ways to enjoy the summer season.
I have had over 22 summers with lupus now, and each one has taught me something new about my body and its limits. I know I can’t survive summers ignoring my lupus. Ultimately, I can only survive it by respecting my what my body is telling me and being prepared to plan around that truth.
Listen, I see you. I know summers can be hard, but it isn’t impossible. With the right preparation, protection, pacing, and a little grace for yourself, you can make it through the summer and still find moments of real joy along the way.
A quick medical note: I am not a doctor, and this article reflects my personal experiences living with lupus for over two decades. Although photosensitivity and heat sensitivity are widely recognized as common lupus symptoms, every person’s experience with this disease is different. Please be sure to speak with your rheumatologist or healthcare team about a summer safety plan that fits your specific diagnosis and needs.
Frequently Asked Questions
Q: Can sunlight trigger a full-body lupus flare?
A: Yes. Photosensitivity affects 40% to 70% of people with lupus. Exposure to UV rays (even through windows or clouds) can cause skin rashes, systemic fatigue, joint pain, and severe disease flares.
Q: Does indoor lighting affect people with lupus?
A: Yes, certain types of indoor lighting, such as fluorescent and halogen bulbs, emit small amounts of UV rays that can trigger symptoms. Switching to LED lights can help protect your skin indoors.
Q: How does heat affect lupus if you stay in the shade?
A: Even in the shade, high temperatures and barometric shifts cause physical stress, which increases systemic inflammation, joint swelling, and profound fatigue.
