The photosensitivity roller coaster. Climb aboard if you have lupus!


As mentioned in a previous post, I had to wrangle up some photos for a recent interview I did, and I ran across several that struck a chord. 

Below is what I call my "My Photosensitivity Wardrobe" series. If only I had a picture of me, huddled under an umbrella with full length beach pants on, without a scrap of skin showing. Then you would see how far I've come! 

As with many things with lupus, my photosensitivity has changed over the years. If my disease is active, my sensitivity to the sun increases. There have been times during the worst flares when I was so sensitive to the sunlight that walking from a parking lot to a store was too much. It zapped my energy, and any prolonged exposure resulted in increased symptom activity.  

Those were the times I donned a hat anytime I was outdoors. Not just at the beach, or a trip to the park. I mean EVERYWHERE. If I went out, my head was covered.

This was also the period in my life when all of my short sleeve shirts and shorts moved to the back of my closet, replaced with pants and long sleeves, even in the summer. If I felt daring, I wore 3/4 sleeve. Ooh! Racy! 

During this time, the bathing suits I owned never saw the light of day.  I didn't buy a new one for years, because no one ever saw them under my SPF-protective clothing or a full-coverage cover-up or pants. And they certainly weren't fading from the sun! I remember thinking that at least I was saving a little money each summer. 

But this dark period (see what I did there?!) didn't last forever.  Once my disease activity was managed, and I became stronger and more stable, my photosensitivity let up. 

But I eased into it, make no mistake. I tested my exposure tolerance very, very slowly. 

Here are just a few snapshots of my experiments over the years: 

***

1) First up is a picture from a marathon my family and I did about two years after I was diagnosed.  I knew I wanted to raise money for the cause, and at the time, the best option seemed to be the Arthritis Foundation of America. Our options? A marathon in Hawaii...or Dublin, Ireland. 

While this tropic-loving family REALLY would have preferred Hawaii, I knew that sun exposure for an extended period of time was out of the question.  So off to the cloudy, overcast skies of Dublin, we went. As you can see in the picture below, the weather cooperated. Not a ray of sunshine in sight! 


2) This picture is more recent - but donning the sun hat is still always a must. Also lathered in sunscreen, but happy and healthy enough to wear a suit and spend some significant time in the sun. 

This right here - it was worth all the sacrifices I made to get better, get stronger, and to get my disease under control:  extra naps, changes at work, accepting help, saying "No", trying the tough medications, putting plans for kids on hold. Basically downshifting life in general. All for the long range goal of doing stuff like this - traveling to fun, tropical places so I could frolick in the surf with my girls. Yeah, I say, "Worth it." 


3) This photo below exemplifies what used to be my typical beach outfit - long sleeves, spf-protected clothing, and pants. Not sure where my hat is, but you can also see the time of day. I used to be relegated to early mornings and late afternoons. Actually,  not bad times to be beach-bound, so I tried to make the most of it. But anytime you don't get to choose when or how you do things, you feel a little gypped, don't you? 


4) And this is a picture of me out fishing with my Dad and daughters. Look who's hauling 'em in, now?!

This is another milestone - a couple of hours in the sun was out of reach for sooo long. But not now!



5) Last one. When I married Johnny almost 20 years ago, I knew two things - he was a good man, and he loved golf. Nothing has changed all these years later!

Becasue I was diagnosed with lupus just six weeks after we got married (starting debilitating symptoms just two weeks after our honeymoon), I never had the chance to take up golf with my links-loving husband. Four hours in the sun for this photosensitive gal would have meant serious flare-ville. But it was okay.  When he played golf, I napped, headed to the spa, or relaxed. Then, we'd meet afterward for drinks. A win-win for everyone. 

But as my disease management has improved, and our girls have come to the age where golf could be a family affair,   I've been tempted to give a try. Here I am out on the course, swinging it like a champion. 

When we do play as a family, we stick to late afternoon/early evenings for a couple of reasons. But I love that this was an activity that was definitely out of the question during my early years with lupus because of sun exposure. But not anymore! 


Comments

Melissa - 710.9 said…
Hi, Sara! Thanks for another inspiring, educational post.

I hope you'll consider not using the word "gypped" in future posts: https://www.npr.org/sections/codeswitch/2013/12/30/242429836/why-being-gypped-hurts-the-roma-more-than-it-hurts-you

Thanks!
Sara Gorman said…
Melissa - Thanks for reading! Wow. I'd never thought about the etymology of that word before. I even had to look it up to confirm its correct spelling, and there certainly wasn't anything derrogative in the definition I read. Thanks for sharing. I learned something!

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