Behind the Brand- How PANDAS Disorder Changed my Life

As this community grows, I wanted to share a bit more about myself. I am in the process of writing a book and used this excerpt as the introduction. I figured, what better way to introduce myself here than to use this as well? Here is my story, a crazy, painful, but incredible journey:

I’m trapped. It hurts more than anything I have ever felt. No matter how hard I try, I can’t escape myself. I scream. I grab onto whatever I can feel and fall. This can’t be real, but I know it is.

Technically, my story began on January 12, 2004. I was born in a small town in Minnesota with my momma who was basically a single mom as my dad lived thousands of miles away and quite frankly, didn’t do much. There are plenty of details l could add, such as how my mom’s mindset in life transformed me and raised me to have the open-mindedness I have today, or that for the first 6 years of my life I lived with my grandparents and mom and they became second parents to me.

Everyone can tell a story, and it starts from the moment they are born. My story could start that way too, but it’s not going to. The story I’m telling began on March 10, 2019, when I chose to begin living. Without this moment, my life would be completely different.

This day started with some sort of illness that I thought was just a cold. That was until I was out with a friend and her family and almost fainted, causing quite some chaos. It was the beginning of some sort of illness, probably strep or something similar and I spent the week in bed quite pleased with an excuse to spend all day doing nothing. Fast forward a few months and I had recovered from this illness but developed severe suicidal depression, anxiety, behavioral regression and so much more. My voice changed; I started talking in a child’s voice, unable to form full sentences. My mannerisms changed; I developed tics. I had gone completely psychotic. The illness lasted about a year in which ‘normal’ became a completely mixed-up version of who I am. 

It took 7 months to find a diagnosis, but we learned that I had developed an autoimmune illness where my body began attacking my brain. It was similar to PANDAS disorder or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

That year was when my story began. Outside of appointments, I started picking up various coping mechanisms that changed my life entirely. I started to be more patient with myself and embrace my flaws instead of hating them. I began to put myself back together again after my life had been torn to shreds. It completely changed my life. 

Today, my life is difficult, no doubt, but I’ve learned to love it in every moment possible. I have spent the last year dedicating myself to becoming the voice that I needed during my time of illness. I have built this website and community to do this as well as working to share my story and provide resources for others. 

I can guarantee one thing- the key to opening a world of possibility to creating your own life, the foundation of my own journey, and that of many others as well, is mindset. Without making the decision to change and using that promise to yourself, and maybe others too, you won’t get anywhere. All that I write here in my online journal is a result of my own mindset shifts. That’s just it though, they are my own experiences and may not apply to everyone.

I am not perfect. 3 years after recovering, I spent time in the hospital after another close-to-suicidal episode. Over the years, I have learned that in any situation growth is not linear, and that’s okay. Struggling with mental health taught me that life will always be messy and filled to the brim with struggles, but these struggles can be placed beneath my feet as stepping stones to move forward, rather than behind. By no means am I a professional, but my hope is that through my words, you too will be able to own the life you create for yourself. 

This story is a story of a young girl, broken and unbroken again. This story is a story of a messy life, one that is beautiful and lost at the same time. This story is my story, one of which I am finally here to share with you.

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