I was diagnosed with Marfan when I was 8 years old. The cardiologist painted a grim enough picture and provided such little take home information that my parents were understandably quite frightened. The natural consequence of this was that they became overprotective.
From that time on, I was labeled as the weak kid, the beanpole, the one to be careful around. The teachers, I’m sure, thought they were doing me a favor with their speeches. One had kids in the class list ways they could treat me well. Another cautioned to my fellow students that if I fell down the stairs, I’d get really hurt.
Everywhere I turned, this message of being fragile was reinforced. And kids? Some kids can sniff out weakness a mile away. I was bullied for years: taunts, threats, and physically being pushed around (yes, even into a trashcan). I wasn’t sure what to do. Part of me retreated into my studies, part of me was depressed, and part of me was angry. I reacted by trying to pretend like there was nothing wrong with me. Since those with authority over me wouldn’t let me do the kind of tasks that were safe for me to do, I began to engage in activities that definitely were not safe for me: carrying heavy containers, playing dodgeball, running till I couldn’t catch my breath.
It took me a long while to see myself as strong and capable. The comments from the teachers, the bullying from the students…they forever affected who I am. It’s not who I am anymore, this weak, passive person, but the memories will never leave me.
So parents: please be very conscious of how you label your children with special needs/chronic illness. This doesn’t mean you ignore their limitations or push them to disregard their restrictions, but that you allow THEM to define how their illness defines them. Make sure your children’s teachers, friends, and extended family are focusing on what they do well instead of any negative that their illness brings.
These days, I’ve proudly labeled myself a Marf. Instead of meaning one who is weak and fragile though, it stands for one who is strong, creative, and able to go with the flow.