As we all know, adolescence is one of the most difficult stages in life, and lupus can complicate things. This is a time where the importance of socializing, achievement, and appearance are at their developmental peaks. Missing hangouts with friends, having to stay home from school, not being well enough to take part in extracurricular activities could make a teen feel isolated. Weight gain from prednisone use does not help with an already precarious body-image. As parents, you know that your teen with lupus takes on grown-up sized realities in order to manage her illness. And you probably experience an array of emotions, ranging from awe to frustration, as you support and protect her during this journey.
We recently aired a webinar facilitated by renowned pediatric rheumatologist Dr. Philip Kahn. The webinar includes an overview of how lupus manifests in children and teens. It’s important to discuss the complications that can arise with lupus because it makes the importance of treatment that much clearer.
Importance of the Teen-Doctor Relationship
Treatment not only includes medication and lab reports, but it includes psychology and knowing how to successfully navigate human relationships. Both parents and teens could benefit from tips on how to effectively communicate with doctors. But in addition, Dr. Kahn shared some important ways for parents, teens, and rheumatologists to foster a relationship that could lead to better outcomes for the teens:
It’s important that you trust your doctor. And if you don’t trust your doctor, it’s important to find a doctor you can trust. (If you need help finding a doctor you can trust, try contacting a lupus organization near you.)
It’s important for parents to step back and allow the teen to foster her own relationship with her doctor. She needs to be able to know that she can confide in the doctor and that, unless she is in imminent danger, the doctor is not going to turn around and share that information with her parents.
A goal of treatment and parenting should be to help your child develop a sense of responsibility around living with and managing lupus. For example, she should be her own voice and be able to eventually say things like, “I have lupus and therefore I shouldn’t spend all day in the sun trying to get tan because that could lead to a flare.”
Support is Key
Whether or not you are the teen with lupus or the parent, obtaining support is very important. There’s a variety of ways that a family can obtain support. For example, the Hospital for Special Surgery has a teens and parents program that provides support, separately, for both. Their website includes a downloadable booklet, For Inquiring Teens With Lupus: Our Thoughts, Issues, & Concerns, that is available in multiple languages. The Hospital also runs a national telephone support program, Lupus Line that is available both in English and Spanish.
Every year we, the S.L.E. Lupus Foundation, sponsor 40 families from around the country to attend Camp Sunshine. The camp provides support and activities for both parents and their children, with and without lupus.
If you do not have access to support groups or ties to an informal lupus community, I recommend seeking out support through a licensed psychotherapist who can guide you and help you and your child effectively manage the challenges of having lupus, including the emotional ones. Look for someone who has experience with people who have chronic illness. You can figure this out by simply asking the therapist when you first call her.
With support, the realities of lupus will not disappear, but the more support that you are able to obtain, the better your quality of life will be because you will feel less alone and better equipped take on the curve balls thrown at you; plus, you will have more emotional energy to enjoy the good times, which are to be savored.