Trigger Warning: Self-Harm & Suicide
The following story discusses experiences with self-harm, suicidal thoughts, and psychiatric hospitalization. If you are sensitive to these topics, please proceed with care.
If you or someone you know is struggling, help is available:
📞 988 Suicide & Crisis Lifeline (U.S.) – Call or text 988 for free, confidential support 24/7.
📞 Crisis Text Line – Text HOME to 741741 to connect with a trained crisis counselor.
📞 The Trevor Project (LGBTQ+ Support) – Call 1-866-488-7386 or text START to 678678.
You are not alone. 💙
My name is Ella. Five years ago, I was thrust into my PANDAS journey without any idea what was happening. From age 14 to 19, my life was one big roller coaster ride, but today, I can thankfully say that my life has never been better. I’m in a place I couldn’t have ever imagined in the depths of my crisis.
My life before PANDAS seemed literally magical. For example, in 8th grade, I was at the top of my class, the president of the Student Council, and an actor in every school play. I had good friends and loved to have sleepovers at my grandparents’ houses on weekends. In the summer, I took fun vacations with my family and attended a variety of theater camps. On the final day of 8th grade, we had an awards ceremony – I walked out of school that day decked in medals, marking various achievements, a visible marker of my extraordinarily positive middle school experience.
When it was time to start high school, I naively assumed that my life would only get better. Always enthusiastic, I sat in a front row seat in every class and threw myself into making new friends and joining new clubs. I auditioned for and was cast in a leading role in my high school’s musical. I couldn’t have been happier. I was on track to have the high school experience of my dreams.
Then, in the fall of 2019, I got strep throat for the first time in my life. A few months later, I tested positive for strep again. Like everyone, I blew it off as no big deal. Kids in school get strep all the time. However, in the weeks and months that followed, I knew something was wrong. I was feeling extremely anxious and developed a set of compulsive behaviors that took on a life of their own. Then, in March of 2020, the world shut down. Any noticeable changes in my behavior, as well as my anxiety, were blamed on the massive life disruptions caused by COVID, which seemed perfectly reasonable at the time.
By May 2020, I had developed severe motor tics, my facial expressions had altered, my gait had noticeably changed, and my OCD obsessions and compulsions had started to become way more visible. That summer, I saw a therapist for the first time and was told that I had very high anxiety, which was news to me!
That fall, going back to school, I started thinking a lot about self-harm. It wasn’t so much that I wanted to hurt myself, but a pervasive thought of ‘what if I did this’. The biggest problem was that my impulse control was nonexistent. So, instead of worrying, “What if I cut myself?” I actually started doing it (thankfully, I never inflicted any serious damage). This specific compulsion continued on for a month or so and then it progressed to thoughts of suicide. In the Spring of 2021, I had progressed to thoughts of “what if I killed myself,” and I would regularly make lists of ways I thought I could accomplish this.
I was being attacked by thoughts of hurting myself at all hours of the day, and since the thoughts terrified me, I was sharing them with the adults in my life as a cry for help. I would sit in a class, making a list of ways to kill myself, hand it to the teacher, and get sent up to the guidance counselor, who would then send me home. This happened way too often, so much so that in April of 2021, my therapist and guidance counselor agreed that I should only attend half days of school. Then, in the final six weeks of my sophomore year, I started leaving even the reduced number of classes I was supposed to attend in order to compulsively talk to my guidance counselor.
In the summer of 2021, I got admitted to a psychiatric inpatient hospital for the first time, but unfortunately, not the last. No one had any idea what was going on. I was misdiagnosed with bipolar disorder and put on an antipsychotic medication, which did nothing to help. That Fall, I withdrew from the school I was attending to attend a fully online school because I was spending almost no time in class and the school administration didn’t think they could keep me safe at school.
Then I started talking about driving my car off a bridge and I became obsessed with the idea of jumping off a balcony. After months of talking about it, one day, I acted on a wild impulse and ran up the stairs at my house, and I dove headfirst off the second-story balcony into our foyer. By what felt like a miracle, I sustained only minor injuries to my jaw, but this event led to my second psychiatric hospitalization.
This was what finally prompted my newest therapist (my fifth one in 18 months) to suggest that I might be dealing with PANDAS. She told my mom, “People with OCD worry about taking actions like this, but people with PANDAS actually take them.” As awful as that day was, it provided such an important clue. I cannot express how grateful I am that my therapist made this connection – it was the turning point. She referred me to someone who ordered the Cunningham panel, which definitively confirmed PANDAS. At this point, I had been ill for two years, so it took about a year of treatments before I began to see any real progress.
Treatment started with antibiotics and then a round of steroids (which did NOT go well for me), and finally, in April of 2022, I got my first round of IVIG. This was the FIRST thing that helped significantly, so much so that I was able to go back to in-person school at the start of my senior year. By that point, my near-constant intrusive thoughts of self-harm had started to lessen a bit. By the Spring of my senior year, while I was functioning, my progress had plateaued. I was falling asleep at school (taking breaks in a room we’d agreed I could go to when I felt sleepy), and I would have moments where I would be completely overtaken by thoughts of self-harm and aggression, so my parents pursued and secured a second round of IVIG. The week after my high school graduation, I got my second round of IVIG and the improvement after that was just incredible. I could feel my life getting better by the day. In August of 2023, I started college like any other student – taking a full course load and living on campus in a dorm which was such a giant step!
I had an amazing freshman year in college – I never missed a single day of class, made friends, was a part of two of the theatre departments’ productions, joined committees and clubs, and got involved with campus ministry.
This past summer, I completed an internship, drove myself to and from the office, and had a ton of social plans on the weekends. My fatigue (while still a little frustrating) has returned to a normal level, and I only take naps occasionally. Now, I’m in my sophomore year of college, and I have a level of joy and peace that was completely inaccessible to me throughout high school. I am not afraid to leverage support where it’s helpful: for example, I have an accommodation plan in college through student disability services, and I live close enough to home (about an hour away) to have easy access to my parents, but I have full agency in how and when I use these resources.
I am so grateful to have gotten my PANDAS diagnosis when I did so that I could get into treatment. When I was in the worst of it and hospitalized, one of the nurses told my mom, “The GOOD news about PANDAS is that these kids get BETTER!” and she was right. I’m so thankful for the incredible OCD therapist I see and the two rounds of IVIG that feel like they gave me my life back.
While my progress was slower than I would have liked and included setback after setback, today, I’m really grateful for where I am, living a normal life where no one would guess what I’ve been through. Life honestly just keeps getting better and I hope this gives someone hope that yours can too.
Ella | she, her, hers
Gabriella True
