Most people love sun-shiny, cloudless days. Those of us who are photosensitive have learned to fear them. Photosensitive means that the sun or even UV rays from artificial lighting can trigger an autoimmune response. For some of us, that means anything from a rash to a full-blown flare. I am at the extreme end of responses to the sun. This makes some easy things in life extremely difficult.
Until about three months ago, I lived in a tourist beach destination. The only things that people did were eat out at over-rated chain restaurants and go to the beach. Neither of these things are reasonable for my health. One time I took my boys to the beach. It is like heaven for them to run around all day in sand and surf, and there is no guilt quite like mommy guilt! We were on the beach for a total of five minutes, long enough for them to run into the surf screaming with glee before it hit me. I felt sick. I mean really sick, like I’m-getting-really-scared-here sick. I started breaking out in hives everywhere and getting more and more light-headed. I ordered them to drag everything back to the car immediately. There is a full momma bear mode voice that every mom can use from time to time that assures her children they had better listen and listen quickly. At the time my kids were little, maybe five and six, and they were upset at this turn of events but they heard in my voice that they needed respond. They couldn’t understand what was happening. Little did they know that just standing on the beach on that hot and sunny day had me fighting for my life! It’s not just that I can’t spend a day at the beach.
Recently my sons were signed up for swimming lessons at our (new) local park district. It was a really cool outdoor pool with not one but two diving boards. Upon arriving at their first lesson I felt a sense of panic rising as I searched for a spot to watch from. Initially, I tried sitting with all of the other moms under a nice little pergola with picnic tables. I quickly realized that the slats overhead were spaced way too far apart to provide the safety of shade I needed to avoid getting sick. At that point, I had to find shade or cancel the lessons. Thankfully there was a park bench outside the pool fence in the shade of a lovely tree. Did I look silly sitting outside the pool watching while all of the other moms hung out together under their pretty pergola? Absolutely. But that’s just the thing, invisible illness means that most of the time we look silly.
(That is a lovely piece of fence in the picture since I had to take all of my pictures from outside of it!)
I feel silly that I carry an umbrella for shade to the park with my kids or that I wear a sun hat on days and in places where most wouldn’t. It took a while for me just to embrace the fact that there are ways I need to protect myself that others just won’t get. It took even longer for me not to feel bad about the adjustments that I had to make in the way that I raised my kids because of my illness as well. I mean, can you imagine as a child never going to the beach while living in a town obsessed with the beach? It took a lot of explaining to and understanding from my kids as well.
Another area of photosensitivity that has been a problem for me has been artificial lighting that emits UV rays. If you find yourself under fluorescent lights you are absorbing UV rays. This is a problem for someone who works in office buildings and schools or warehouse type stores that use lots of fluorescent bulbs. I have spent many years working as a teacher and substitute teacher and one of the things that I quickly realized is that a full day under those lights had an impact on me. I felt more drained and less overall wellness. I often left the overhead lights off and substituted lighting with UV-free lamps whenever I could.
All of this has been a growing experience for me. I’ve grown in learning and accepting the limitations my autoimmune mess places on me at times. I’ve grown into maturity in how I handle those limitations. I’ve grown as a mom to not feel so guilty about balancing my illness with how I raise them. They need to be helping me and the more they help me and support me, the more I can do for them.
Here is what I’ve learned about handling my extreme photosensitivity.
- Invest in the cutest of sun hats. You don’t have to wear your grandma’s old sun hat (unless you want too and that’s cool too!) You can rock that accessory with ones like this, this, or this found on Modcloth. (LOVE their clothes!)
- Use an all natural sunscreen. Don’t pile on unnecessary chemicals for your body to further react too.
- Plan your activities around the shade. I know that kind of stinks but if you are an outdoorsy type, like my family, or you want to do something outdoorsy choose an activity and place that offers shade. I know which parks and trails are shade friendly and those are the ones we stick too. I don’t have to completely miss out on hiking with my awesome family I just have to hike in wooded areas that offer lots of shady trees. (It’s prettier anyway!) Get the idea?
- Don’t be afraid to stand up for your health. Don’t feel guilty about having to tell your kids, or friends, or whoever, I can’t do that. I can’t sit outside in the sun at restaurants. You have to eat inside with me or I can’t join you. If you do it anyway then you’ll miss the next thing you want to do because you’ll be flared up from not taking a stand the last time. You have to pick and choose what spoons you are going to spend and blowing them all over a little bit of sunshine seems kind of wasteful to me.
- Take a look at the lighting around you. Is is impacting your health and if so maybe your workplace would allow you to modify things. Use light bulbs that are UV-free and if that is not an option you can actually buy UV-blocking sleeves to place over lights like this or UV blocking clothes.
What crazy photosensitive adventures have you had in your autoimmune journey? What’s worked to keep you safe in the sun? Share your thoughts below!