Managing Lupus and Photosensitivity
One of the most prevalent symptoms for lupus is photosensitivity, or being sensitive to light. Tack on the fact that most lupus patients are also given medication that makes photosensitivity worse, and you’re looking at some pretty miserable days out during the summer.
I’ve actually been photosensitive my entire life thanks to my father’s extra-white Polish and Irish heritage, which demanded 50+ sunscreen any time we spent time outside. Growing up in California and vacationing with my relatives in Georgia over the summers meant that the smell of sunscreen went hand-in-hand with the smell of freshly cut grass and lazy summer days.
Because photosensitivity has been something I’ve always been pretty used to, having lupus didn’t necessitate a huge lifestyle change that others may notice. But as a lupus patient and resident whitie (my mother’s olive skin from her Ashkenazi Jewish heritage was not passed along to me!), I can give you my best tips for avoiding the sun and therefore avoiding flares and sunburns.
Sunscreen Is Your Friend
Even if you don’t have super-white skin, slathering on the sunscreen is a necessity for lupus patients — particularly if you take medication that makes your photosensitivity even worse. Don’t think that if you don’t burn easily that you can skip this step; you may still find yourself burned or having a flare if you don’t take proper measures.
Personally, I use a tinted moisturizer with a built-in sunscreen (SPF 15 or so) so that even on the coldest days, my face is protected. For days when the sun is out in full force, I will put sunscreen with at least an SPF of 50 on any part of exposed skin.
If you are sweating, at a waterpark or out for more than a few hours, reapply every couple of hours. Even if it claims it is waterproof, it may not be fully. Trust me, I’ve worn 50+ on every inch of my body and still burned to a crisp because I neglected to reapply. Don’t let it happen to you!
Work It With a Hat
I find that my face often gets burned, so a hat is a great choice for keeping the sun out of my face. You can show off allegiance to your favorite sports team or rock a stylish sun hat.
If you’re going for a day at the beach or the waterpark, a big 1950s glam sunhat will both protect you and keep you looking chic.
Cover Up When It Starts to Boil
If you live somewhere where it gets extremely hot, or plan a visit to such a place (like the Middle East or Las Vegas, for example), cover up if you’re going to be outside for long periods of time. Of course, this doesn’t mean wearing a bulky sweatshirt, but light-colored cotton material will help protect your skin and keep lupus flares at bay.
Try to limit your time in the sun if it is so hot where you live/are vacationing that long sleeves are appropriate.
Know How It Affects Your Body
Photosensitivity can affect people with lupus in many different ways. For some (like me), it means a wicked sunburn if you’re not vigilant.
For others, it can mean the appearance of a malar rash from lupus or even a flare. Know the consequences of photosensitivity so that it won’t take you by surprise.
Talk to Your Doctor
Plaquenil, one of the most common medications for lupus, increases photosensitivity. This is why I need to constantly reapply my sunscreen and still find myself burned to a crisp at the end of a day outdoors.
When put on a new medication, always find out if it puts you and your skin at more of a risk by having a conversation with the doctor.
Sunglasses Aren’t Just a Fashion Accessory
It may be partially because I also have Sjogren’s, but I find that my eyes are especially sensitive to the sun. This means that when it is sunny, I’m all for whipping out the sunglasses and keeping my eyes covered.
Make sure, however, that any sunglasses you purchase have UV ray protection, otherwise you may end up hurting both your eyes and the skin around them with a nasty burn.
Sunscreen, Sunscreen, Sunscreen
We’ve already gone over the importance of applying and reapplying when it is hot, but you also need to apply sunscreen if you’re going to be outside and it isn’t hot. Activities such as snowboarding, skiing or anything that has you out in the cold means you are potentially putting your exposed skin in danger.
Wear sunglasses and make sure your exposed skin has plenty of protection on it. You don’t necessarily need to wear a heavy amount of sunscreen that needs to be constantly reapplied during cold weather, but a thin layer of a smaller SPF will do to keep your skin happy and healthy.
What to Do If You Do Get a Sunburn
It is extremely likely with lupus, no matter your skin color, that you will get a nasty sunburn at one time or another. If it happens, make sure to stay hydrated with sports drinks and plenty of water.
Soak in lukewarm baths, take NSAIDs (such as Advil or Tylenol) and apply aloe vera to the affected area. You may feel a bit ill for a day or so.
If you are feeling dizzy or confused or parts of the affected area turn white (apart from peeling), call an ambulance or go to the emergency room right away as these may be signs of more serious issues.
After making the switch to more energy efficient light bulbs, many companies decided to use low-energy fluorescent lights that can cause reactions for those with photosensitivity. If your place of employment uses these bulbs, speak to them immediately about your medical condition as this can exacerbate your lupus symptoms.
You should also be aware of this when purchasing light bulbs for the home and instead stick to LED or halogen lights as these will not interfere with lupus symptoms.