From The Archives: Fall 2006 Issue of Lupus Now Magazine
What Obstacles?
By Jaclyn Law
We've heard that our first "Teen Talk" in the Summer issue was a big hit. So, we tracked down four teens who belong to a teen group of the LFA Piedmont Chapter in North Carolina. We wanted to know about their ups and downs of living with lupus and what they've found works best to get past the tough times. And you'll see they've got it handled! First, the introductions:
Julia Smith*, 14, 9th grader
Leslie Cooper, 17, college freshman
Miranda Lord, 19, college sophomore
Joell McGruder, 13, home-schooled 8th grader
How the Lupus Clues Added Up
LESLIE: I was diagnosed with lupus in July of 2004, when I was 15, the summer between my sophomore and junior years of high school. I was sick for a while, but I didn't have anything to attribute it to. I went to the tanning bed one day and came out with a rash on my face. I didn't think anything of it, but it didn't go away for a couple of weeks. My health got progressively worse, so I went to my doctor. When I found out I had lupus, I was terrified. I had no idea what it was, but at the same time I felt a sense of relief because I finally had an answer of why I felt so sick.
MIRANDA: I was diagnosed when I was 11. My first symptom was a raised mark under my right eye. It looked exactly like ringworm, but my mother and I weren't concerned because my sister had had ringworm before and it eventually went away. As time went on, it began spreading across the bridge of my nose. My mother took me to the doctor and after multiple tests they diagnosed me with lupus. My first question to my mother was, "Am I going to die?" She reassured me with a firm "No."
JULIA: I was diagnosed when I was eight. I cried hysterically. I thought it was like cancer and that scared me. I felt that I was very unlucky. When the doctor explained some more to me, I felt a little bit better.
JOELL: I was diagnosed in January of 2003 when I was 10. I started feeling sick during Christmas at my grandmother's house. We didn't think anything about it because the flu had been going around. I got sicker and sicker and lost a bunch of weight. It took the doctors weeks to figure out what I had. One doctor finally diagnosed me-she knew what it was right away. Then I didn't know what to feel.
Physical Changes
JULIA: I was on a strict low-sodium diet because lupus affected my kidneys, which was hard at first, but now I'm used to it. I also gained a lot of weight and it made me more self-conscious. I couldn't run track this past year because I was going through a flare-up.
I had done the 800-meter in seventh grade. I probably won't try in my ninth-grade year. I missed running track at first, but not anymore.
MIRANDA: I couldn't complete driver's education because my hands couldn't tolerate turning the wheel. I only drive a little bit, like driving around a cul-de-sac and doing three-point turns. For transportation, my family helps me out all the time. Some of them don't allow me to remain in the mindset that I will never drive. They reinforce that I will drive on my own one day and encourage that.
But, despite those times of pain, fatigue, numerous hospital visits, and days missed from school, I graduated high school with an A/B average and I lived on the college campus and maintained a 4.0 GPA my freshman year.
What Helps
JOELL: I do feel lonely, angry, and scared because I'm always sick and it's very serious. But I don't talk to friends or family about my feelings because I just don't like to talk about it. When I feel like this I play video games to take my mind off of it, and I draw pictures. I draw pictures of random things, anything I see.
MIRANDA: There are times when I feel really sad because I feel I am not attractive. I think that the whole world sees the lupus and not Miranda. As I have gotten older, I've learned that I'm beautiful and that people will be comfortable with me once I act comfortable around them. I know that I can't dwell on negative thoughts because it does more harm than good to me. My faith has truly helped me cope with lupus and gives me strength from day to day. When I am unhappy, I pray and read the Bible. I have Bible scriptures in my bedroom that remind me of how beautiful God has created me.
LESLIE: If I'm having a rough day and feel alone and upset, I'll talk to my mom and she always helps me sort out my thoughts. This makes me feel 100 times better than if I keep how I'm feeling to myself. Also, when I participate in charity events for lupus, I feel happy that there are a lot of people in my community who care.
Sorry, But I Can't Today
LESLIE: It's sometimes hard to explain to people why I can't do something if they don't know that I have lupus. When I meet people it's not the first thing I tell them, so sometimes it can cause awkward moments. When I don't feel well enough to go out, I usually start to feel bad, but in the end I realize that people who truly care about me will understand.
JULIA: When I was in a flare-up, I didn't like to go out that much because my face was so swollen, so I tried to stay inside as much as possible. I also felt like some of my close friends pulled away from me. A lot of people stopped calling. One time I was away from school for a week, and the next time for two weeks, and it just felt different when I went back. Some of my close friends just didn't want to hang out as much, but my friendships with people who stuck with me have gotten stronger.
There's More To Me Than Lupus
LESLIE: Lupus is something that I have to deal with every day. I've missed school because of doctors' visits and hospital stays, but I make sure that the right people know what's going on, like my guidance counselor and my teachers. The fact that they knew about my lupus helped out a lot, because they were naturally more understanding. My guidance counselor set up a plan that would excuse my health-related absences, so I wouldn't have to worry about going to the doctor. My guidance counselor was also the one who told all of my teachers when I was diagnosed with lupus.
Lupus affects my life because I always think about what effect it will have on my future, like going to college and having a family.
JOELL: When I was attending school, before I was being home-schooled, I always felt sick and missed many days. Today I still exercise, just not as much. I used to lift weights, but my doctor told me not to anymore [because of joint pain]. Now I walk instead, and I still play football.
What I Know Now
MIRANDA: I have learned that having this health condition shouldn't hinder me from living a normal life. Of course, there are obstacles-for instance, a lot of water and soda bottles are nearly impossible for me to open, and I usually have to ask someone to do it for me. It can be frustrating when I am by myself and I try my best to twist open a bottle of water and the cap won't even budge. But I don't give up easily-I have several small rubber hand mats that make opening up a bottle easier. It makes me appreciate any mini-milestone and I never take anything for granted.
As I have matured and talked with my godmother, I realized that life is not all about the physical, but what is on the inside. The physical goes through its changes but what's on the inside lasts for a lifetime.
JULIA: I've learned that I am stronger than I thought, and that I have a lot of people praying for me to get healthier-close people around me. I learned that I can live with this and not feel alone. Once when I was going through a flare-up, I read up on it, on the Internet, using Google. It helped me to better understand it. And, I've encouraged several classmates to never give up in school. I've been told that I am an inspiration.
Words of Wisdom
JOELL: Take all your meds every day because you're just going to get worse if you don't. I also would tell other young boys with lupus to try to keep up with their studies and to exercise daily.
JULIA: Be strong and take care of yourself spiritually and physically. Eat right and exercise as best you can. I enjoy exercising and feel great after a good workout. My favorite activities are cardio salsa, dance, and the treadmill.
MIRANDA: I would tell anybody not to allow this condition to get the best of you. Your attitude about it makes a huge difference, because your thinking ultimately reflects your behavior and how you feel.
LESLIE: Never, ever isolate yourself from your friends, family, and others who care about you. In the end, they are the ones who want to help you the most, and that is what they are for.
* a pseudonym