Alessia’s PANDAS Story
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 again, unable to see or hear anyone around me. I fall, not feeling the pressure as I hit the ground. Everything is blurry- I grab onto whatever I can feel; anything to keep me here. This can’t be real, but I know it is.
We often hear about PANDAS disorder from a parent’s perspective. We hear from the people who watch their children suffer wishing more than anything that they could take it away. They tire themselves out trying to share their voices. But what if this time we heard it from someone who experienced it themselves? What if we heard someone who recovered? What if we heard a success story?
If you’re reading this, you likely have an idea as to what PANDAS disorder is. But in case you don’t, allow me to explain. PANDAS disorder stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In simple terms, my body had an autoimmune response that started attacking my brain. This is the illness that changed my life.
When preparing to write this article, I was unsure where to start. I had a completely blank canvas and my only guidance was to write from my heart. So here, I lay down the words from my heart:
When I was 15, I went psychotic. After getting sick for a week, my body started attacking my brain leaving me with sudden mental and physical issues. 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 twitching my eyes and tripping over my own feet repeating, “Alessia die Alessia die,” too many times to count.
I don’t think I will ever be able to explain the true depth of what having PANDAS felt like, but I can explain it to my best effort. I used to sit down with my mom at nights and explain to her that it was as if I was in my own body but a monster had replaced me. Nothing seemed real; I was in a video game and there had to be some secret to getting out. For the first few months I fully expected to wake up one day to it all being nothing more than a bad dream.
That didn’t happen. My nightmare was my reality. I turned to suicide instead.
I spent months trying to come up with a plan to kill myself. It was all I wanted and it was the only solution in my mind.
“I can’t live anymore. It’s too hard. It’s too painful…. I’ve thought of the options- I could steal my parents car in the middle of the night…but…I’d probably run into something…and wouldn’t hurt myself enough to die… I don’t want to do anything slow, I just want it to be done with. It’s not because I don’t like myself and I want to cause pain. It’s because I’m in pain and I want to get out of it.”- April 2019
I went to a total of 13 doctors in 5 different health systems that year. I went through an MRI, an EEG, and a spinal tap. I was tired of appointments. I was tired of clinics and hospitals in general. Most of all, though, I was tired of my doctors ignoring me. I clearly had PANDAS disorder, but doctors were hesitant to diagnose me due to the lack of research on the disorder. Each and every doctor I went to avoided my gaze as if they thought I couldn’t hear them. I may have been psychotic but deep down I was still there. Deep down, I wanted to be heard. Deep down, my heart broke each time I heard them tell me, “We’re sorry. There’s nothing else we can do.”
As time went on, my mom found a doctor who had previously worked with PANDAS disorder. The appointment was scheduled months away. The moment I sat down in front of him, I was afraid to hear the same words again. There’s nothing we can do. This time, that didn’t happen.
As we had waited months for the appointment, I began growing out of the disorder. I was improving and was able to return to school successfully. By the time we attended the appointment, I was doing better, though I was still in pain.
After some talking, he left the room and returned with papers and a bottle without saying a word. I stared at him in disbelief and fear. I couldn’t believe it was true. I needed to hear the words. So I looked at him and asked him and the words that came out of his mouth changed my world.
“Yes, you have PANDAS disorder.”
7 months. 13 doctors. 5 different health systems.
5 simple words.
The doctor gave me antibiotics to support my recovery. While I had already started recovering, he continued to support me and keep in touch, if needed. It took months, but I returned back to the bubbly person I am. By the time my birthday turned around, I had gotten myself back, the greatest gift I could have ever imagined.
Somewhere along the way, I had promised myself that if I survived, I would do anything I could to share my story. Now, I am fulfilling that promise.
When I was sick, although I couldn’t articulate myself, the memories are still there. The pain, the flashbacks, the PTSD, the needed hours in counseling? It’s real, it’s raw, it’s my reality. I fell and my life was torn apart, but it happened for a reason.
Today, I have returned to myself. I graduated highschool with multiple academic awards, rejoined activities that I love, and am writing this article from my college dorm room. I am alive again. Throughout my journey, I’ve built a platform, called Eunoia of the Soul, to become the voice I once needed. Through my podcast, partnerships with resources such as PANDAS Network, and the community I have built, I am making a change. My life is not perfect. I still struggle with PTSD-like symptoms and the everyday struggles of life itself, but I am stronger than I once was. I have learned to overcome and heal from my struggles, though they are not gone, and I am dedicated to being a voice for others.
As I reflect on my past, I reflect on the notion of pain itself. One way I often describe the pain of PANDAS is that it was as if my entire being–everything I knew of myself–was the outside of a ceramic doll that cracked and fell to the ground piece by piece in a matter of seconds, only leaving my soul, raw and vulnerable to the world. As I sat in pain, ceramic pieces and the dust of the doll of the person I once was surrounding me, I had to face that soul more vulnerable to the world than ever before.
I’ve asked myself so many times, why do we break? Why do we crack, the heavy pressure of life and time on our shoulders until it is too much? I’ve only found one good answer- it brings us back to ourselves; we fall because it allows us to pick our pieces back up creating a stronger, more true version of ourselves. It hurts more than anything, but it builds us up stronger than anything as well, if we let it.
So, here is my story. Here is my voice. Here is where I stop being silenced.
To the parents reading this article, please keep doing what you’re doing. Don’t stop using your voice. And please take care of yourselves too. Trust me, even though they are unable to convey it, your children see you. The reason I didn’t commit suicide was for my family. I didn’t want to put them through more pain. When talking to people about PANDAS disorder, I learned that many parents get the impression that their children are gone. They think their kids can’t hear them anymore. Even though I had lost everything I knew, I still couldn’t let my parents lose that too. I promise you, your children are thanking you. They hear you. They love you.
To the precious angels out there dealing with PANDAS, you are stronger than you will ever know. I will not stop until my story is shared not only for me but for each and every one of YOU. I have been where you are. I have felt what you feel and I am here to tell you that I promise you are not alone.
It’s time we share our voices. It’s time we reach our full potential.
This, my friends, is only the begin