From the Archives: Summer 2008 issue of Lupus Now
Shades of Summer
by Patrick Hayes
For many teenagers, summertime means no school, long, lazy days and fun times spent at the beach, at camps, and on family vacations. For teens with lupus, however, this fun time can be tempered by symptoms brought on by sun exposure and wanting to fill each day with activities. It can also be intimidating to tell friends that you can’t do certain things because of lupus. For this issue’s Teen Talk column, we asked three teenagers how they manage having fun in the summer without taking on too much. We talked to Susan B., 14, from Independence, KY; Gloriana DeCandia, 15, from Ventura, CA; and Soha Gilani, from Abqaiq, Saudi Arabia, 14, who all have lupus.
Lupus Now: Is it difficult telling friends you can’t participate in certain activities? What can you do in the summertime?
Soha: For me, it is not difficult at all. My friends are very understanding. There aren’t many things I can do during the summer, but indoor swimming is a possibility. I tend to stay away from outdoor activities in the summer, so going to the beach or playing volleyball outside are activities I can’t partake in; mostly I just stay indoors and maybe play basketball or go bowling.
Gloriana: It’s usually not a problem -- friends understand if you just explain it to them. Most are considerate and work around it. I can basically do everything; I just have to set limits for myself. If I go to the beach, I’ll sit under an umbrella and make sure I have plenty of sunscreen on. I go swimming -- I just have to pace myself, and take breaks sitting in the shade for a little bit.
Susan: Most of my friends don’t know I have lupus because my symptoms have been so mild, but when I do tell them, they are sympathetic. I do most all of the normal summer stuff. I like to go swimming; I’ll just put on a lot of sunscreen to be safe. I have occasional joint pain, so swimming is good because it doesn’t bother my joints.
LN: What kinds of activities present difficulties for you in the summertime? How do you handle it when your friends want to do these things?
Soha: I miss going to the pool or going sunbathing, and I get especially mad when our school hosts events at water parks. But I try to make everyone understand my situation and make a compromise -- instead of spending a morning at the beach, how about going at sunset and making a bonfire?
LN: How did you first figure out what you’re not able to do? Was it a specific incident when you were younger?
Gloriana: When I first learned I had lupus, I did exactly as the doctor told me about going outside. But then I started doing my own thing, and the day after being out in the sun, I wouldn’t feel too well. I think, little by little, you do stupid things like that and you figure out you should go by what the doctor says.
Susan: Just before I was diagnosed, I was visiting one of my aunts and I got really sick because I was out in the sun a lot.
LN: Is it difficult telling yourself, “OK. I need to sit this one out?"
Susan: It’s not really an issue. My mom is always nagging me to put on sunscreen and I’m always like, “Mom, I don’t want to,” but I have to take time to put on sunscreen and do other things so I can participate in summer activities. There also have been times when I didn’t want to take a break, but if I have to sit something out, I just try to let [my frustration] go.
Soha: For me, it most certainly is. This year is my last year in my school and next year I will be going to boarding school, so I wanted to participate in everything. When track season came around, I didn’t join. Then, I discussed the issue with my parents and doctor and they all agreed that I could run, but I had to be very careful. The doctor told me to run short distances and sprints because short distances only take up to one minute. So, that’s what I did -- I only ran the 100-meter, which took me about 15 seconds. That isn’t too much exposure to sun. I’m also lucky that the track where we practice every day is shaded, so I was able to train with my team.
Gloriana: I’ve had lupus for so long that I kind of understand now if I have to miss out on a party because I’m not feeling good, or if I won’t be able to go somewhere because I can feel a flare-up coming on. It’s what I’ve got to do to stay healthy.
A Doctor’s Perspective
We spoke with Peter Chira, M.D., a pediatric rheumatologist at Lucile Salter Packard Children’s Hospital at Stanford University in Palo Alto, CA, to find out what advice he has for teens.
- Teens with lupus should understand their particular symptoms of lupus -- everybody’s a little bit different. Often we’ll say that you shouldn’t be out in the sun or be stressed out, but there isn’t one set guideline for saying "nobody should do x, y, z ..."
- A lot of the kids are really young when they first present with their lupus, so they don’t know what their initial manifestations were. One of the crucial things, especially for teenagers, is trying to figure out if they remember what they went through -- did they go through chemotherapy? Were they hospitalized? If they can identify what their initial manifestations and symptoms were, they can identify what will trigger a flare-up.
- To explain how they’re feeling, teens with lupus could tell their friends, “Remember when you had the flu, how you felt with that? There are times that I feel like I have the flu every single day of my life. You look at me and I do everything, but that flu feeling is always inside of me.” The flu is something that their friends can understand. If they can get that empathy, their friends can understand things a little bit better.
Most people are fairly understanding. For teens with lupus, it’s about overcoming a fear and misconception that other kids don’t want to understand. Kids do want to understand. They want to know what their friends are going through and, while they may not go through it themselves, I’ve found that they’re empathetic and sympathetic if their friend has limitations caused by having lupus.
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