Lupus, a chronic autoimmune disease, can affect many parts of your body such as your skin, joints and organs. You may have heard of adult celebrities like Nick Cannon and Toni Braxton who have lupus, but did you know that teens are affected by lupus too? May is Lupus Awareness Month and it is a good time to learn more about lupus.
Being a teenager and getting diagnosed with lupus can present a lot of unexpected changes in your life. For many, it can mean having to see doctors regularly, taking medications everyday and staying out of the sun. When we think about being young and a teenager, we think about going to school, hanging out with friends and not having to worry about more serious adult problems. This isn’t the case with teenagers coping with lupus. At a young age, they are faced with learning how to manage a chronic illness.
In our experience as a social worker, we’ve learned that what health professionals think are the biggest issues with lupus are not necessarily the concerns and worries that teenagers have with lupus. While your doctors are concerned about keeping your lupus in remission, making sure you take your medications everyday and keeping your appointments, teens are more concerned about being a normal teenager. It means being able to go out with your friends, date, go to school and have fun!
For teens with lupus, living with lupus means having to make a lot of adjustments that are not always easy. One of the biggest changes is how lupus and its medications can affect your appearance and your mood. One medication that is commonly used to treat lupus is steroids. Although it can help quiet your symptoms, it can also make your face look puffy (doctors refer to this as cushingoid) and may also cause you to gain weight. Also, steroids can make you more irritable and cause sleep problems. When you are a teenager, there is a lot of social and peer pressure around how you look. These changes in your appearance can be hard to explain to friends and some are not always so understanding about an illness they don’t know about. These physical and emotional changes can affect your self esteem and your sense of identity. It can make you feel frustrated and sad especially when you are going through a lupus flare and are not able to do your regular activities.
It’s important to remember: you are not alone! Talk with your parents and open up to close friends that you can count on. There are many teenagers with lupus going through similar experiences that can give you support, advice and even make you laugh when you are going through a hard time. In addition, social workers are available to provide supportive counseling and education on lupus. Having lupus may be challenging, but with the right kind of support, you can continue to pursue all your interests and goals while maintaining your health!
If you want to check out a booklet written by and for teens with lupus and also more information on support and resources like our teen chat groups, go to https://hss.edu/lupus-programs
Questions on lupus are welcome by phone.
Lydia Vazquez and Su Jin Kim are Licensed Clinical Social Workers
