Spoonies and the Sun

by Ariela Paulsen
Spoonies and the Sun

Sunshine can be such a wonderful presence in life. The warmth spreading over your face when you first step outside… there’s nothing quite like it. Vitamin D, and even just the feeling of sunshine on your skin, can have health benefits and can drastically improve mental health. Yet, for many people living with chronic illness, the sun can also be dangerous.

Most people are aware that UV rays can cause skin damage and even cancer. But chronic illnesses like MS, Lupus, rheumatoid arthritis, POTS, MCAS, and more can be triggered or worsened by the sun.

This dichotomy — both loving and fearing the sun — makes summertime a challenge. Sure, you can tell yourself to just avoid the sun, but when it’s also such a wonderful feeling, it’s tough to stay away.

This month, we chatted with Lauren Maley, our Friend in the Fight, about her complicated relationship to the sun. Here are a few highlights from our interview with her:

What was like life before Lupus?

My life before Lupus was tied to the sun. I based most of my life decisions around it. My mom worshipped the sun, my grandfather worshipped the sun…and me especially, worshipped the sun. I never got overheated. I could lay out all day every day, I never burned, and nothing made me happier than the feeling of the sun on me. It’s like a hug from a god. I studied outside, I ran, I backpacked, I swam, I’d gravitate towards anything that could get me some time in the sun.

Flash forward about 10 years, I’m 24, just moved to LA – mostly for the sun – and I’m starting to get more health issues. The sun started to make my face blow up in a butterfly rash, and very oddly – my ears would swell, itch, turn bright red, and not a single person I saw had any idea what was wrong with my ears. Eventually, my face rang the alarms, and that was the beginning of my SLE lupus diagnosis. Turns out rashes and dots I had started getting from being out in the sun were discoid lupus. We never had any idea. 

How has that relationship changed with your diagnosis?

For a while, I was rebellious, and still went in the sun. So long as the rash wasn’t too bad, I thought it was no big deal. But I think I used up my entire life of sun quota in a few months because suddenly, everything changed. 
Now, about 4 years after my first butterfly rash and about 3.5 years after my diagnosis, the sun has become my worst enemy.  

The sun is the number one thing that makes me flare now. No matter what I do, it will get me. I could be the most conscious of it possible and I’d still get sick. 

Do you have any advice to share?

Prevention is key. If I had known I had all these things wrong with me that could eventually lead to getting Lupus, I would have made very different decisions. Always wear SPF. If you get a rash from the sun, stop going in it. Get used to being pale and learn to rock it. Invest in broad spectrum SPF like neutrogenas formula. UVA and UVB coverage is critical. Avoid being outside, even in shade, between 10-2:30pm. Wear hats and UV protectant clothing if you can. Reapply often.

And when it’s late enough in the day, and you need a hug from a god, take ten minutes and let yourself soak it in when you can. 

Mighty Tips for Managing the Sun

Lauren’s story reflects many spoonies’ experiences. So many of us have an emotional attachment to the sun — it’s tough to cut it out completely. Lauren’s advice is great: stay protected, but once in awhile embrace your love of the sun, if only for a few minutes.

As Lauren recommended, UV protection is key. You can even buy UV protectant window film. This clear plastic coating covers your windows so that you can feel the glory of the sun without UV rays! You can also wear sun hats, UV clothes, sunscreen, and avoid outdoor time during peak hours.

Whatever your coping mechanisms, it is normal to have a complicated relationship with the sun. Know your own boundaries, but also take care of your mental health and enjoy it in a way that is safe for you!

For more on enjoying summer within your body’s boundaries, check out Mighty Well tips for keeping your cool!

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