The Summer and Photosensitivity

When you think of summer, what  do you think of first!?! For many people they think of vacations, time at the pool, outdoor barbecues, baseball games, and just being outdoors in general. For those of us living with lupus our list looks a little different.  We are thinking about sunscreen, missing out on things because of the heat, the risk of a flare. Along with deciding whether said activity is worth the day(s) in bed it will take to recover.

Summer just started and it seems like most areas of the US have been under a major heat wave this week, with heat advisories. The high temperatures are not good for anyone, but it is especially bad for those of us with lupus. The heat can cause flare ups so much faster than you can imagine. That’s why you have to learn about your body, how photosensitive you are. As well as  what warning signs you may experience when you’ve been in the heat too long.

What is photosensitivity?

Most people have very little understanding of what photosensitivity is. Because, at least in my case, my doctor never really explained what it was. Or how it could impact my body. I would just be asked if I’ve noticed being more sensitive to the sun, and reminded to wear sunscreen.

Many, myself included, have no idea just how much more dangerous being “sensitive to light,” can be. Along with the fact that it’s not just exposure to the sun. It can be triggered by fluorescent light and can trigger more fatigue than your norm, skin rashes beyond the butterfly rash. In severe cases it can even cause inflammation of the internal organs.

Why are people with lupus more photosensitive?

Two-thirds of people with lupus have increased sensitivity to ultraviolet (UV) rays. Also known as photosensitivity. This can be caused by either sunlight, or from artificial inside lights, such as  fluorescent lights - or both.¹ There is a very complex process in our body where skin cells die through a process known as programmed cell death. Basically the body just gets rid of dead cells. But in people with lupus this process happens more frequently than in an able body. This causes more inflammation. So we have to do anything possible to prevent UV exposure.

What are the best ways to protect from UV?

• AVOID BEING OUTSIDE DURING PEAK HOURS  - You can plan your outdoor activities during the cooler periods of the day. Avoiding peak heat and sun hours between 10am to 4pm.
• ALWAYS WEAR SUNSCREEN - The FDA recommends that everyone wear at least 15 SPF. But people with lupus should be wearing a MINIMUM 30 SPF, 70 is better. A broad spectrum sunscreen that covers both UVA and UVB.² You should always protect your lips with 15 SPF. It’s important to remember that sunscreen needs 20 minutes to fully be activated, before you get out in the sun, and remember to reapply sunscreen every 2 hours.
• WEAR PROTECTIVE CLOTHING - When you are going to be in the sun/heat for any amount of time it’s best to cover what skin you can. They do make clothing containing SPF. Wearing clothing and/or a hat that will reflect or even absorb the sunlight. When looking for clothing to wear in the sun it’s important to avoid super lightweight silky type fabrics, as those can still let light through.  So look for tighter woven, long sleeves and long pants or skirts.  I personally find maxi skirts to be the most comfortable, and versatile.

What works for you?

It will likely take some time to figure out what will work best for you in regards to outdoor timing, sunscreens and clothing.  The best you can do is know your options and choose what works best for you.