Sharing the Journey: June 2019

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

In the summer, it can feel like the sun is unavoidable. How do you explain the precautions you need to take to your friends and family?

Summer is the worst season for my lupus. The heat gives me headaches, and of course, I have to stay covered up. My friends and family know that if we make a trip to the beach, I have to sit under the pier, and that I’ll be covered in a full body swimsuit with a hat, or wrapped up in a towel. Now, I’m definitely that spunky woman that has to have the perfect Instagram beach picture, so I pose in my cute bikini, but then I immediately go back to being covered. When I was younger, I hated this, but now that I see how gracefully I’m aging, I thank lupus sometimes for making me take care of my skin! – Kayla

As a sun/summer lover, I’ve had to really change the way I enjoy my time in the sun. Lots of hats (always), sunscreen, umbrellas, spf clothing, and always try to find a shady spot! I have young kids and I don’t want to miss out on their life, so I make sure I’m prepared to block out the sun, otherwise I will pay for it later. – Roxi 

During this time of the year, my family does many outdoor activities where the sun is shining very hot. I try to explain why I avoid being in the direct sun. I articulate to them that due to my lupus, the sun can be very tough. I explain how it burns my skin within minutes, and I feel like my skin is on fire. I also tell them about how the sun can be very draining when you have lupus. I explain about the medication I take and the sun. I really avoid long periods of time in the sun. It has been to the point that the prolonged periods of being in the sun have made me so sick. I’m grateful that my family and friends understand every precaution, and they encourage me not to be out in it for a long time. There are times when it’s unavoidable, and I always end up suffering from the sun’s direct contact, especially on my face and arms. – Sylvia 

Summer may be the most exciting time of year for most! There are so many outdoor activities to enjoy; however, for those living with lupus, we have to take extra precautions and prepare immensely for the sun exposure. Explaining this to friends and family can be difficult because most of the time the sun may not really bother them. It is important to have open conversations prior to summertime to prepare your loved ones for the things you will need to enjoy the sun. Personally, I not only need sunscreen (all year round), but I need protective hats, sunglasses, umbrellas, and as much shade as possible. I explain to my family and friends that in order for me to participate, I need these things so my skin doesn’t turn red and blister. I explain it as a severe sunburn all over my body that has the potential to land me in the hospital. Since no one wants that to happen, I have gotten nothing but support. It is also imperative that I hydrate to prevent passing out, and if it is really hot, I just may not be able to go. Keep your communication open and transparent with your friends and family and you will have a successful and fun summer! – Angel 

The sun can be my best and worst friend, all in one day. This is due to the self-fulfillment that being able to go to the pool or beach allows me to feel, but I am also faced with the issue of having no energy left at the end of my trip. Explaining this to my friends and family can be hard. The best way I have found to explain it is that if I spend one day in the sun, I have to give myself two days off of work or anything else. The rash that sometimes occurs from the photosensitivity not only leaves me itching, but it also decreases my self-confidence. Overall, the ability to be in the sun for a period of time is one that is very meaningful to me, but it takes a deep understanding of the consequences to be worth it. To help with sun safety, I always make sure to try to stay in the shade or water to keep my body at a cool temperature. I have learned that it is when my body gets hot that I break out or get sick. I always make sure to bring an umbrella when I go outside for long periods of time.  – Tiffany 

The precautions I need to take to try to avoid the sun is wear a lot of sunscreen and whatever we do outside we have to do it short periods of time. I live in Arizona so the sun is always hot and harsh on my skin. The best thing to do is wear long sleeve shirts and sneakers. My arms and feet always seem to be the most affected from the sun if I’m out too long. – Kyra 

In the summer, I always make sure to put on a high SPF sunscreen every morning. This way, no matter what I’m doing, I’m always protected and sometimes I don’t even have to mention it to family and friends. When I do have to discuss it with them, I normally say that I have a bad reaction when I am in the sun for too long and just need to be careful. I tell them that I will try to be with them as much as possible, but I have to monitor myself, otherwise I could get a rash and/or get sick. I know how much my body can handle. So, I try to do what I can, then explain as much or as little to my friends about my disease as I feel comfortable when I need to start sitting out of activities. – Becca 

Explaining sun safety to family and friends

For people with lupus, it can be difficult to enjoy outside activities – especially during the summer. You want to be able to go to the beach or pool, take your kid to the park, or join a family cookout. But you know you need to protect yourself from the sun — even when it’s not sunny out. What do you say to your friends and family? 

It’s important for family and friends to understand lupus and sun safety so they know how to help and adjust. Be open about how the sun affects you. You may want to explain that:

• Being in the sun can trigger your lupus symptoms or make them worse.
• Some medications can make you more sensitive to the sun. 
• There’s more to sun safety than using sunscreen — like staying in the shade, and wearing sun-protective clothing, a wide-brimmed hat, and sunglasses. 
• You may have to limit the time you spend outside and go inside early or take a break.
• It’s better to try to plan outdoor activities for early in the morning or later in the evening. 

You can share our 5 facts on sun safety or 10 truths about UV light. And if you’re planning a trip, check out our lupus travel packing list as a reminder to pack sun protection and other essentials.