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As a teen living with spondylitis, you may find that having a chronic illness will affect you emotionally, or it may impact relationships with your family and friends.
Once you are told you have a form of spondylitis, you may be relieved to get a name for all of the symptoms you have experienced, but you may also feel scared, angry, sad, frustrated or generally unsure about the future. These feelings are completely normal as you begin to learn about spondylitis and how to adjust to it. With time you may discover that, while the residual pain and discomfort are annoying, the pain does come and go, and you can learn to deal with it and look more positively to the future.
We also want to encourage you to bring positive support into your life, whether it be family, friends, teachers or counselors, because we know from experience that the more support you bring into your life, the easier it will be to cope with your disease. Because it is sometimes hard for those who do not have spondylitis to relate to you, encourage them to learn about it. You can refer them to this website or to our parent site at www.stopas.org.
We asked teens Tyler, Brian and Katlin some questions about how living with spondylitis has affected their relationships with friends and family and how they maintain a positive outlook. Here are their answers:
How does having spondylitis affect your friendships?
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Tyler: My friends say they understand, but often they really don't. You have to look out for yourself and protect yourself, because no one else will. Sometimes, you have to say no to your friends and sit on the sidelines to avoid activities that are too painful. It really sucks.
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Katlin: I have to go to countless doctors appointments, for instance my rheumatologist is at UCLA. This means that sometimes I am not able to hang out with my friends, because it is basically a whole day affair. In addition, my mom won't let me do things where I can potentially hurt myself (e.g. Ice blocking, ice skating, mud sliding in the rain).
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Brian: It's hard sometimes because they don't know the exact pain that you're going through. But I have good friends and they all I know that I have a disease so they're all chill about the situation.
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Christine: Sometimes I can feel a little left out because I want to do everything they do, but sometimes it's hard. I had a good friend that had rheumatoid arthritis, and she was my only friend who might have had an idea of what it's like. Then I met someone else about a year after who knows exactly what it's like because she has spondyloarthropathy too! I was sorry that she had it, but I was so excited that someone else knew what I was going through, and I knew what she was/is going through. It is nice having a friend whom you can relate to.
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How does having spondylitis affect your relationship with your parents?
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Brian: I'm glad that this happened because my parents and me got to know each other a whole lot better.
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Tyler: It's weird, because my mom has spondylitis. You'd think she'd be the most understanding person of all. But there are times when she thinks I'm faking it, or using my pain to get out of doing something I'd rather not do. My dad tries to understand, but he's a tri-athlete who runs, swims and bikes in competitions. He gets frustrated with me when I'm in pain and I have to miss school and sports practices.
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Katlin: I know my mom is always worried about me overdoing it or being in pain. I had an incident where I slipped and fell on the pool deck, hurt my back, and had a concussion prior to being diagnosed with AS, and I am sure she worries about me getting hurt again.
I know she stresses about my medication, getting me to physical therapy, and my doctors appointments, so I know my relationship has changed since I have been diagnosed.
My dad just wants me to do my best at all times, and doesn't always understand if I am especially hurting before a water polo game or swim meet.
Also, my relationship with my younger brother who is 14 is now different too. News that he was diagnosed with Spondyloarthropathy hit our family just before this past Christmas. He is now on medication and is still playing basketball. I feel that I need to be a good role model to him, to show him that by persevering you can achieve your goals.
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How do you stay positive?
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Christine: I have learned that I can't just wait for somebody to make me feel better because usually they don't know what to do. I have decided not to just sit around all day and feel sorry for myself. Complaining doesn't really solve anything so I try not to. It doesn't do any good. I save complaining for when I see the doctor.
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Katlin: I am very competitive, and want to do well at school and in sports. I can't focus on the negative if I am going to do my best. I always listen to music before games and swim meets and this keeps my mind off pain and lets me relax and focus on what I need to do to meet my goals.
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Tyler: When I'm in pain, it affects my whole outlook on life. But nothing snaps me out of depression quicker than getting a phone call from a friend. Laughter gets my mind off my pain, and somehow, it has a lasting effect. Other great mood lifters: Cartoon Network, Comedy Central, or listening to a great song. I like to download my favorite comedians to my I-Pod and share an earbud with a friend. It's therapeutic to laugh with another person.
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Brian: I like to listen to motivating music. And tell myself that life's tough let's make it tougher.
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