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!
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