A Personal Triumph for Sun Safety

It didn’t take long after my lupus diagnosis for me to realize I was likely going to have some level of sun sensitivity, either from the disease or the medications that were treating it. My head was spinning from all the rules and recommendations. Wear a hat at all times! Stay out of the sun in the middle of the day. Wear SPF 50! Buy UV blocking clothing. Get tinting on your car (there’s even a special permit for this in my state). Make sure you always carry sunscreen!

Like many aspects of lupus, it took me a while to find my own sweet spot in handling this issue.

The early years of sun sensitivity

The first thing I had to do with my new knowledge of sun sensitivity with lupus was grieve. I no longer left my home or workplace and turned my face towards the sun with peace and joy. I was stressed all the time about sun exposure and my body’s reaction. I didn't want a preventable flare. I was even stressed about the UV exposure from fluorescent lights and started avoiding them as much as I could.

I bought long sleeve rash guards, huge hats, and lots of sunscreen. I joked that I should invest in sunscreen stock. I found myself asking people to move into the shade when we were out together. Whenever possible, I avoided being outside during peak hours. I learned from my dermatologist, after a scalding rash, that I can only use gentle mineral sunscreen on my face because it’s so prone to inflammation in the areas of my butterfly rash. But this sunscreen turned my face chalky white and I hated it.

I alternated between avoiding the sun and ignoring my previous safety precautions. I became very tired of following so many rules. My enthusiasm for sun safety waned. I had a few rough experiences because of that attitude, but then a highly motivating factor emerged – protecting my children from the sun.

My 3 tier sunscreen system

This summer my boys are 3 and 6-years-old. They want to be outside. I knew that I couldn’t (and didn’t want to) limit our sun exposure or be careless while outside. I went back to the basics and bought a sampling of sunscreens to try out again. Thankfully I was able to learn from trial and error and created what I call my “3 tier sunscreen system”.

First, I use a gentle mineral sunscreen – made for babies with cocoa butter in it – that comes in a stick form. This helps my joints a lot because it’s easier than rubbing in liquid sunscreen. I apply it to my face and my sons’ faces and any other sensitive high-sun areas. I tell them it’s their facial massage and it goes surprisingly well with a bonus of having very little risk of getting any in your eyes.

Then I coat whatever isn’t covered by rash guards or swimsuits with mineral sunscreen. This can be hard because rubbing it in thoroughly on me and two energetic kids can cause sore joints and tiredness. Some mineral sunscreen is much harder to rub in than others. I’m currently a big fan of Sun Bum sunscreen for ease of application and effectiveness. It takes a few minutes, but this completes my second tier.

(Bonus tip: always go underneath the rash guard or swimsuit a little when applying sunscreen, as they'll often ride up while playing or swimming.)

My third tier involves a chemical sunscreen that I spray in hard-to-reach places. But I’ve also started spraying it on top of the mineral sunscreen spots where there’s high sun exposure, so that I can cover any accidental gaps. It may seem like overkill, but I believe this final layer plays a huge factor in our sunscreen success. At this point, we set a timer for 90 minutes so we don’t have to wonder about when to reapply.

Feeling proud of figuring it out

By using this combo of a gentle face stick, easy to rub in mineral sunscreen, and another protective layer of spray-on chemical sunscreen on top, I’ve finally achieved a sunburn free summer vacation! We recently spent 3 full days at the lake, being outside during high intensity UV periods, and only had a little redness one day, which I treated with pure aloe vera. I guess you could call the aloe a fourth tier, because if you apply it often enough after seeing redness you won’t have to worry about feeling any burn or having your skin damage or peel.

Being able to have fun with my family while staying safe from the sun was a huge achievement for me. It was also freeing to figure out an effective sunscreen system and not always have to be hiding or covered with a restrictive hat when I wanted to be jumping off the dock and swimming around with my kids.

I know my experience may not work for everyone. Some people with lupus have extreme photosensitivity and wouldn’t be able to have success with my method. But I hope these tips can help someone who just needs that bit of extra help to stay sun safe this summer.