Tips for Raising Teens with Lupus

September 28, 2018

At age 16, I was diagnosed with RA and systemic lupus. I had ignored or denied the pain, fatigue, rash, and depression for months. As an outgoing teenager, I didn’t know how to communicate what was going on in my body. My Spanish teacher, who I consider my lifesaver, recognized my malar rash and sent me to the nurse’s office. Following a complicated work-up, my rheumatologist shared my diagnosis with my mother, and together, they informed me. My first thought – I wonder if this will override my grounding the night before.

It did! But the bad news was the onset of feelings that presented later – betrayal, isolation, confusion, anger, fear – feelings I still have as a young adult. As a Licensed Clinical Social Worker and “patient-professional” I now provide those I engage with with a neutral space to process feelings and thoughts but also empathy that others may not have. Given this perspective, below are some tips for parents, providers, and other members of teens’ support systems that can help them work through and with their experience. They are the next generation of advocates!

  • Encourage ownership! Teens should be active participants – answering and asking questions, engaging with providers, and taking on tasks such as taking medications on their own and learning about insurance.
  • Validate! It’s OK to be sad, angry, frustrated. It’s unrealistic not to be. Say it! “You feel sad and that is understandable.” Ask how you can help, get them connected to resources like therapy, groups or camp, or provide tools to process their feelings in creative ways like art, music or sports. Don’t be afraid to share your feelings with your teen, as well. They know much more than you think.
  • Develop autonomy and empowerment. Ask open-ended questions, create a realistic menu-of-options (would you like to do this now, in an hour, two hours, for example), help teens create goals and identify pros and cons around their choices, ask permission before offering your thoughts and check-in with teens after you’ve offered your perspective.
  • Treat teens like teens! Maintain discipline, allow them “normal” teen activities and the opportunity to problem-solve around how to participate given their condition, support identity development – however their diagnosis fits. Teens are still active members of the family and have their own role. Denying them that makes it must harder to adapt to independence.

Of course, this is just the tip of the iceberg. The important piece is that EVERYTHING IS GOING TO BE OK! Providing support, including the tips above and simply listening, not only encourages healthy coping with teens’ diagnoses but also development of strong, autonomous, and empowered adults.

By Liz Morasso, LCSW & Lupus Advocate