Being a teen with PANDAS and chronically ill is hard!

Ava has been battling PANS PANDAS for years. Now that she is a teenager, there are new obstacles to face.

When I read Ava’s entry on the struggle of being chronically ill as a teenager, I felt her anguish immediately. One of my teens read it and immediately agreed that it takes so much from you; you start to have goals for high school and beyond, but this illness can change them instantly. Please read Ava’s story and reflect on your child or friend with PANS PANDAS; may it increase our empathy and open a discussion with our teens with PANS about their struggles.

ava pandas Family StoryI think that people often forget about chronically ill teenagers. We aren’t adults yet, but we also aren’t little kids anymore. We’re in the middle of everything and everyone. We can understand what doctors are saying to us and why, but we don’t have the experience that adults have to accept and process it. We are sick at a time of our lives when we are supposed to feel invincible, young, and fearless. Life isn’t in our control anymore. As teenagers and young adults, we want to have almost everything in our control because for most of our lives it was our parents in control. But since we are sick, we no longer have that control, the sickness does.

As teenagers, we understand what is happening to us and our surroundings, but we don’t know how to cope. We are also at the age when we want independence and freedom, but because of our “situations,” we can’t have that. While other kids our age get to go out to football games and parties, we have to stay at home in case we end up flaring suddenly. Imagine everything you looked forward to throughout the first several years of your life was just automatically stolen from you. That freedom that you looked forward to, the Highschool life you looked forward to, everything, is just taken away. Now you start to feel a sort of isolated feeling.

It’s hard enough to live life as a teenager with all the pressure and stress, but now you have a chronic illness which makes it 10 times worse. It’s hard living life with very little guidance. It makes it even worse when doctors tell us that there is “nothing wrong with you”. Clearly, something is wrong, I should be living my best life right now, but instead, I’m battling all of these symptoms. We hate it when people treat us as if we’re 5 years old and can’t understand what is happening, because we can clearly understand the situation. But we also hate when we’re told to “grow up”.

Being a teenager is hard.

~ Ava.pandas

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