How to Survive Summer with Lupus & Other Autoimmune Conditions: A Writer's Journey from Struggle to Aloha

Brooke Gilbert
Jun 19
8 min read

Spoonie Summer tips & trips

"I wanted to be where I had to fight against currents and streams. Because that’s where life was lived, amongst all the chaos; in the surf, where ripples turned into waves. No one ever gained anything without taking a risk, and no one ever became a better version of themselves without wading through rough waters."- From The Aloha Butterfly Kiss

I used to dread summer, my favorite time of the year.

As someone living with lupus, the season that everyone else celebrates meant months of hiding indoors, watching life happen through UV-protective windows, and feeling like my body was betraying me when I needed it most. But somewhere between doctor visits where I was called a "cuttlefish" due to my intense pink color (yes, that really happened and made it into my novel!) and learning to navigate life with a chronic illness, I discovered something beautiful: summer doesn't have to be the enemy.

"He took my hand, the warmth comforting me. His whole being provided a much-needed shelter from this storm I’d been trying to survive on my own for way too long."- From The Aloha Butterfly Kiss.

When I wrote The Aloha Butterfly Kiss, I poured my heart into creating a heroine who, like me, had to learn that strength sometimes looks like adaptation, not conquest. Guin's journey of finding love and adventure while managing lupus mirrors my own discovery that we can absolutely thrive during summer—we just need the right tools, strategies, and a hefty dose of self-compassion.

Today, I'm sharing my real-life tips that not only kept me safe and comfortable during summers, but also made it into the back of my novel, The Aloha Butterfly Kiss. These aren't just theories—they're battle-tested strategies from someone who's learned to dance with lupus instead of fighting it.

The Foundation: Understanding Your Summer Challenges

Before we dive into solutions, let's acknowledge something important: if you have lupus or another autoimmune condition, summer presents unique challenges that healthy people simply don't face. Sun sensitivity, heat intolerance, fatigue that intensifies with temperature changes, and the social pressure to be "outdoors and active" can make the season feel overwhelming.

But here's what I've learned: acknowledging these challenges isn't giving up—it's the first step toward reclaiming your summer joy.

Sun Protection: Your First Line of Defense

The Butterfly Rash Reality Check

In The Aloha Butterfly Kiss, Guin learns to see her butterfly rash not as a flaw, but as a reminder to protect the body that carries her through life's adventures. Here's how I've made peace with sun protection:

Essential UV Armor (Links to My Actual Go-To Products):

Rash Guards and Dry Skins: These are absolute lifesavers! I buy everything with UV protection, and I'm not ashamed to say I have a hope chest where I keep my collection so I can enjoy time on the lake. My current favorite rash guard has been a game-changer for outdoor activities, and this alternative option is perfect for swimming.

Wide-Brim Hats: Not just any hat—UV protective wide-brim hats that actually shield your face, neck, and ears. Your future self will thank you.

UV Polarized Sunglasses: These protect your eyes and the delicate skin around them. Plus, they help reduce those lupus-related light sensitivity headaches.

The Game-Changer: UV Umbrellas: This UV umbrella has become my constant companion. If I'm sitting outside—at my friend's twins' soccer game, the beach, or even my own backyard—it's up. No exceptions.

The Foundation Strategy

To help with the butterfly rash, I use foundation with high SPF combined with organic zinc oxide sunscreen. This double-layer approach has been incredibly effective, and yes, that story about being compared to a cuttlefish by a doctor was definitely true—and while it was weird, I've actually experienced weirder medical appointments!

Peak UV Avoidance

Stay inside during peak UV hours (10am-4pm). This isn't negotiable. Plan indoor activities, take naps, write, read, or catch up on that show you've been meaning to watch. Your skin will thank you.

Hydration: The Liquid Gold of Summer Survival

Coconut Water Conversion

Coconut water has become my go-to hydration hero. I used to not like the taste, but now my body craves it—especially during summer. Unlike traditional electrolyte mixes, I don't have to worry about artificial sweeteners or flavors that can sometimes trigger other issues. It's particularly amazing for preventing those summer lupus headaches.

For variety, I also love these electrolyte gummies and take two in the morning and one at night. They help me stay ahead of the game. I used to take salt tablets to help with POTS, but these have helped me to be more proactive and to stay hydrated so I don't get in trouble. And I have Gatorade when I'm feeling nostalgic or need something more readily available.

Temperature Regulation: Staying Cool When Your Body Runs Hot

The Personal Fan Revolution

My neck fan lives in my bag permanently. It prevents overheating and has saved me from more lupus flares than I can count. Combined with this cooling mister, I can actually enjoy outdoor events without feeling miserable. I also use this cooling towel to keep from getting over heated or in case of emergencies. And this migraine ice pack if I got over heated during the day.

Vitamin D: The Ironic Necessity

Here's the catch-22 of lupus: we need to avoid the sun, but we also need vitamin D to boost our immune system. Since all our UV protection blocks vitamin D absorption, supplementation becomes crucial. Always check with your doctor about the right dosage for you. I am vitamin D deficient so I take this higher dosage.

Sleep and Pain Management: The Summer Comfort Kit

Creating Your Sleep Sanctuary

Summer can worsen joint pain and GI issues, making quality sleep even more critical. My pregnancy pillow has been a lifesaver for back and stomach pain—don't let the name fool you, it's perfect for anyone who needs extra support while sleeping. One of my best friends suggested it to me and it was a life saver!

I also swear by this cervical neck pillow for proper alignment and this massager for end-of-day relief. I use it every morning for a lymph massage and to help massage my neck to ward off migraines.

Morning Joint Stiffness Solutions

I swell a lot in the morning during summer, so I've developed a routine that includes heated blankets and heating pads for joint and GI pain relief. Morning and evening baths with Epsom salts are also incredibly helpful.

For topical relief, I rely on my favorite pain relief brand (no fillers!) and arcina gel for targeted pain.

Evening Rituals: Yin Yoga and Gentle Movement

The Yoga Solution

Yin Yoga at night or Yoga Nidra is fantastic for joint pain and swelling. I use this Yin yoga book and the Down Dog app for guided practices. These gentle movements help reduce inflammation and prepare your body for restorative sleep.

Summer Skin Comfort Strategies

Cooling and Soothing Products

Summer heat can make lupus skin symptoms worse, so I've curated a collection of cooling products:

Oatmeal lotion for daily moisture without irritation
Oatmeal bath soaks for full-body relief
Shower spray for help with summer sinus problems
After shower skin care for burns or sun rash: lidocaine gel

Compression with a Summer Twist

Traditional compression can be too hot for summer, so I use lighter compression gear around my torso that provides support without overheating. If you have low blood pressure problems like me, this really helps!

Technology for Health Tracking

Monitoring Your Patterns

I use a sleep tracking ring to monitor how summer affects my sleep patterns and recovery. Understanding your body's rhythms helps you plan better and recognize when you need extra rest.

For respiratory issues during high-pollen summer days, I keep an inhaler nearby and I usually put some eucalyptus and lavender oil in it.

The Power of Community: Finding Your Lupus Ohana

Building Your Support Network

One of the most healing discoveries in my spoonie journey has been connecting online with other lupus warriors through blogs and social media. Sharing tips and tricks, finding common triggers, and celebrating small victories together has been invaluable. This truly is a beautiful community of women (and men!) who understand the unique challenges we face.

In The Aloha Butterfly Kiss, Guin finds her strength partly through the supportive community around her—and this mirrors real life. Whether it's online support groups, local meetups, or even just one understanding friend, community makes the journey so much more manageable.

Specialized Diet: The Anti-Inflammatory Approach

Following a low-inflammatory diet has been crucial for managing my symptoms, especially during summer when heat can increase inflammation. While I detail my specific approach on my blog, the key principles include:

Focusing on anti-inflammatory foods
Staying hydrated with natural options
Avoiding trigger foods that increase inflammation
Listening to your body's responses

Creating Your Summer Action Plan

Daily Non-Negotiables:

Morning routine: Epsom salt bath, gentle stretching, massage, meditation, medications
UV protection: Always applied before leaving the house
Hydration schedule: Coconut water, electrolyte gummies, and regular water intake
Midday rest: Honoring your body's need for restoration
Evening wind-down: Yin yoga, oatmeal bath, cooling products, gratitude journal, preparation for quality sleep

Weekly Rituals:

Community connection (online or in-person)
Gentle movement that feels good
Meal prep with anti-inflammatory focus
Equipment check (sunscreen supplies, fan batteries, etc.)

From Surviving to Thriving: The Aloha Mindset

Writing The Aloha Butterfly Kiss taught me that living with lupus doesn't mean settling for less—it means finding creative ways to access the joy, adventure, and love that make life beautiful. Guin's journey from feeling limited by her condition to embracing a full, romantic life in Hawaii reflects what's possible when we combine practical strategies with a mindset of possibility.

Summer with lupus requires planning, yes. It requires tools and strategies and sometimes saying no to things others take for granted. But it also offers opportunities for deeper self-care, creative problem-solving, and discovering just how resilient and amazing you truly are.

Remember sometimes the most beautiful butterflies emerge from the cocoons we never wanted to build.

Ready to Plan Your Best Summer Yet?

Whether you're newly diagnosed or have been managing lupus for years, remember that every small adaptation is an act of self-love. Every tool you use, every boundary you set, every modification you make—it's all evidence of your strength and wisdom.

Ready to escape into a romance that understands your journey?

The Aloha Butterfly Kiss features a heroine who proves that having lupus doesn't mean choosing between love and adventure—sometimes it means finding both in the most unexpected ways. Available now!

And coming soon: The Heartbeats of Aloha continues exploring how love flourishes when we embrace our authentic selves, challenges and all.

Remember: You are not broken. You are not less than. You are beautifully, powerfully adapting to create the life you deserve. And sometimes, the most magnificent butterflies are the ones who learned to fly differently.

What's your best summer lupus/spoonie tip? I'd love to hear from you in the comments below! And if you try any of these strategies, please share your experience—your story might be exactly what another lupus warrior needs to hear. 💜🦋

"That flap of a butterfly’s wing had amplified into a hurricane. That was the power of kindness. You never knew what a little of it could do for someone."- From The Aloha Butterfly Kiss

Sending you love and endless spoons!

Brooke ❤️🥄

Disclaimer: These are personal strategies that work for me and should not replace medical advice from your healthcare provider. Always consult with your doctor before making changes to your treatment plan or trying new products.

Affiliate Disclosure: This post contains affiliate links to products I personally use and recommend. Purchasing through these links helps support my writing and allows me to continue sharing resources for the chronic illness community—at no extra cost to you!