So, I noticed Sam posting about Tourette Syndrome (TS), Obsessive Compulsive Disorder (OCD), and PANS PANDAS (PP) on Instagram a few months ago. And my first thought was – oooh a young man is actually talking publicly about these disorders and how it affects his life while spreading awareness. Let me tell you, that is pretty rare. Don’t get me wrong, I love and appreciate when all the young women share their stories; they are doing an amazing job spreading awareness and helping our community bond. They are a huge asset to the community, and I hope they continue! But like I said, it is fairly rare for boys and young men to share their stories; we want to hear their voices too! So we started talking about his journey and about sharing his story with ASPIRE. I hope you take the time to read about the path he has been on to find healing, how important it is for the TS and PP communities to understand that dual diagnoses do happen; we need compassion, understanding, and awareness on both. Also, watch his graduation speech; the link is in his story. I think we will all see a bit of our PANS PANDAS journey in his and be inspired by his strength and heart. And of course, I invite you all to share your story with ASPIRE; our stories make this confusing and devastating disorder more understandable and make us not feel so alone in our struggles while providing hope. – Gabriella True
When I was six years old, I was diagnosed with Tourette Syndrome (TS), and later I received diagnoses for Obsessive Compulsive Disorder (OCD) and anxiety. Up until high school, these things definitely affected me but were in no way debilitating. Because of my TS, I sometimes ticced, and people looked at me weirdly, or I hid my tics – which left me exhausted by the end of the day. My OCD caused me to sometimes hyper-focus on things and not see the big picture and also caused me some problems when things didn’t happen the way I thought they should. My social anxiety made me dread events where I had to meet new people and had to talk to them. Despite all these things, I was still just another ordinary kid who was able to do ordinary things but just had a little other baggage to carry.
I was a model student throughout elementary school and middle school, one of the best athletes in the school, and was relatively popular. To everyone else, it seemed that nothing could go wrong in my life; I was considered one of those people that things just always seemed to go right for. What these people didn’t know was the price that all my success came at: how tired I was every day from hiding all of my tics, so I wouldn’t be thought of as weird or different, how much anxiety my sports and academics caused me and how scared I was of social situations despite how well-liked I was by most people. Even though my success came at such a high price to me, I was very thankful that I was still blessed to be able to perform well given my circumstances and was likewise thankful that my struggles were mostly hidden from the outside world.
Then my freshman year of high school came, and my life turned upside down. My TS, OCD, and anxiety symptoms increased so much that I became an unrecognizable person. I missed half of the basketball season, all of the track season, my social life became little to none, and I was homeschooled the last three months of that year.
When typically I took just a little bit longer than the average person to get ready in the morning because of my tics and OCD, it became a 1.5-3 hours process every day for me to get out of the bathroom. I tried getting ready, and then a tic or OCD compulsion stopped me dead in my tracks. Once I did one, it triggered another, then another, and so on. If I messed one up, then I had to start all over again. For a 14-year-old who didn’t want anyone in his family to know why he was taking so long in the bathroom each morning, this was an incredibly stressful way to start your day every morning.
Not only did my tics and OCD seemingly randomly flare up at this time, but my anxiety also went through the roof, and I started worrying about things that had never crossed my mind before. I had always cared about basketball and had dreamed of playing high-level college basketball one day. But suddenly, this dream became a constant fear and obsession that I became focused on throughout the day where I couldn’t focus on anything else. To me, it seemed that if I didn’t reach that goal, my whole life would be a failure. So I spent countless hours of basketball training and researching every day, including during classes at school, and practiced so much that I prioritized it above everything else. The biggest problem with this much practicing wasn’t the time concerns or the effort it took; it was the way I practiced. I was deathly afraid of somehow not practicing the 100% most efficient way possible, so I constantly stopped practice sessions to go look something up and beat myself up if I thought I was doing something wrong. When I did play any basketball games, I was so focused on my goal of playing D1 basketball that I didn’t have any fun, and my anxiety about it made me play much worse. It completely took the fun out of doing something that I once loved.
Another sudden obsession that I had was eating healthy and working out. Like my basketball history, I had always been a healthy person, and I worked out a lot. Even though I was considered very lean and muscular for a freshman in high school, I suddenly felt that I was super fat and skinny and became super self-conscious about how I looked. Also, similar to my basketball obsession, I started doing countless hours of nutrition and weight lifting research where it interrupted my daily life. I also got to the point where I tracked all of my calories each day, weighing myself multiple times a day, looking at myself shirtless whenever I got the chance, and I tracked how many minutes a day I sat down/stood up/walked/did light exercise/moderate exercise/heavy exercise.
Obviously, this is all super unhealthy behavior for a 14-year-old, and it had a huge mental toll on me. I refused to hang out with people when I was self-conscious about how I looked or go to social activities that might have food. I wore baggy clothes or sweatshirts whenever I could to hide my body – even though I was constantly complimented for how I looked.
At first, I hardly ate, and I lifted 1-3 times a day while performing 1-3 basketball sessions a day. This was more difficult than imaginable, both physically and mentally, but I couldn’t handle my fear of what would happen to me if I didn’t do all of this.
At this time, I couldn’t hide all of this from my family. My mom took me to doctor after doctor to see what was happening to me. Eventually, she decided to look into PANS/PANDAS, a diagnosis that she had asked doctors about when I was younger, but they didn’t know about it, understand it, know how to treat it, or didn’t think it was real.
When I was younger, there were multiple times when my brother, who I am very close with, got strep throat at the same time as me, but he had all the strep throat symptoms when I often wouldn’t seem sick. My mom also noticed that at these times, I suddenly had way more tics than I normally did. So when my life suddenly turned upside down my freshman year, my mom thought we should look again into getting a PANS/PANDAS diagnosis.
We went to see a couple of PANS/PANDAS specialists as well as my Tourette doctors, and I did end up getting a diagnosis. I was diagnosed with PANDAS/PANS and continued to have the TS diagnosis. I was treated for PANDAS/PANS by getting a tonsillectomy and having IVIG infusions for about 1.5 years. I also continued being treated for OCD and TS to help in every way possible. Slowly but surely, I started slowly getting back to my “normal” self. Although there were many ups and downs in getting my life back, flash forward to today, and I am back to that same high achieving student who just has some extra baggage he has to deal with at times. I still have tics, OCD, and anxiety, but nowhere near the amount I suddenly had for my first two years of high school. I am able to be successful, and more importantly, I am able to help other people who go through things similar to what I went through, whether having TS, OCD, anxiety, or PANS/PANDAS. One thing I wish for is that more people, especially doctors, would understand that both TS and PANS/PANDAS are real conditions. Too many times, I have seen people from one community act like the other condition isn’t real or as important. I think that can cause some people not to get the help they need. Because some doctors denied the existence of PANS PANDAS or did not understand it, I was almost prevented from getting the diagnosis that ended up leading me to get the treatment that helped me get my life back.
I am currently a Tourette Syndrome Rising Leader for the Tourette Association of America, where I get to travel to different schools and civic organizations to talk about TS and meet annually with Senators and Congressman about increasing awareness and funding for TS research, a camp counselor of Tourette Camp USA, and mentor for younger kids with TS. I was blessed to speak on behalf of my school class at our graduation ceremony, where I shared some of my story with my school. – Link to Video if you are interested.
I hope that I can provide inspiration for anyone struggling with PANS/PANDAS that you CAN get better and get your life back. I recently started an Instagram account to increase awareness and support for various mental health conditions. If you want to connect to me or help support me and my mission, my handle is @and.thrive.