On the other side of the diagnosis

This is a guest post from one of our parent dermbassadors Julie. Her daughter Mia has scleroderma.

Fear, heartache, worry, isolation, sadness: all of these feelings and questions about the future come with a new diagnosis or treatment. Our instinct is to just smile and tell our kids it will be ok—that they will be fine.

And we mean it. We do everything we can to not let on about our own worry and fears. We listen to their fears and try to console and reassure them, in part to help ourselves feel better. If they are ok, then we are ok, too.

But what if we walk through all of the feelings with them? In addressing it head on, we can help them find their voice and a comfortable place to be until they can do it alone.

Here is what I have learned by walking through the diagnosis and treatment process with my own daughter:

  • Listen without trying to fix it, and hear their fears and her worries. We don’t want our kids to cry through an entire appointment or treatment, but maybe they need to until they understand that they are strong enough to get through it.  Be willing to say, “you’re right, it’s not fair and it is hard.”
  • Let them be as private as they want about their condition. Together, come up with a standard answer to give to people who ask questions, allowing your child to share as much or as little about her skin condition as your kiddo wants. Be ready to jump in as their voice; be ready to protect them from people who aren’t satisfied with a short simple answer. Talk with parents of their close friends privately, so they can help their kids understand what their best friend is going through and how treatments may change your child’s appearance.
  • Help them find their way with their appearance. Be enthusiastic about requests to try new makeup or new hats, and do try something new with them. When our daughter wanted to try to concealer, we were all in and helped her to explore it, but we were as quick to abandon it when she decided it wasn’t for her. She is perfect, so there is nothing to “fix.”
  • Be honest when they ask you about their appearance. We tell our daughter: you are beautiful and unique. You have so many things to offer. Yes, your skin has changed but you haven’t changed to us and to those who love you. You are still our beautiful Mia inside and out.

Then… invite the positivity in.

  • You may be an introvert (like me) and not want to go to a group event and meet other families or children who are struggling, but you should go! Warm faces with more experience show you there is light on the other side. It will be your greatest sense of comfort and support.
  • Accept offers for help for your child such as going to camp, putting accommodations into place at school, or talking with an older child or adult with the same condition.
  • Let siblings participate in family days or experiences that help them understand your child’s condition, and in the process, they will become more compassionate people and look beyond outward appearances.
  • Encourage your child to advocate for themselves and be their own voice when they are ready. They can offer hope to someone starting the process.

And when you are ready, open up and share your story as a parent. It is not easy or perfect, but eventually, a new skin condition fades into the background and it is not the most prominent thing in your child’s life. They are a sister, a friend, a student, an athlete, and so much more.