⚠️ Trigger Warning: This story contains references to self-harm, suicidal thoughts, and substance use. Mature audiences only. ⚠️
A young adult endured years of psychiatric hospitalizations, self-harm, and homelessness before finally receiving a PANS diagnosis
After contracting H1N1 at age nine, she developed sudden OCD, anxiety, rage, and food restrictions. Years of psychiatric admissions, self-harm, heavy medications, and misdiagnoses—including borderline personality disorder—followed.
It wasn’t until age 24 that she was finally diagnosed with PANS. With proper treatment, the changes have been dramatic—her family and friends see the difference, though the years of suffering left lasting trauma.
Learn more about treating PANS & PANDAS.
When I was 9 years old, I contracted H1N1. My life was never the same after that. It started with typical OCD compulsions, extremely picky eating, rage fits, and severe anxiety. At the time, my paediatrician suggested PANS, but didn’t pursue it. I wonder what my life would’ve looked like if she had pursued it then.
By the time I was 12, I had my first psychiatric admission. I had begun self-harming and was suicidal. I also dealt with selective mutism. Doctors could barely get a word out of me, which made it very challenging to treat me. My self-harm became an OCD ritual. If I self-harmed, that would prevent me from going “crazy”. I then started to get intrusive images of myself attempting to end my life. These were followed by a compulsive urge to act out the image so that I wouldn’t be so distressed by it anymore. This led me to be in and out of the ER and in psychiatric units.
I was heavily medicated on antidepressants, stimulants, antipsychotics, benzos, etc. This only made me worse. As an adolescent, the doctors could never narrow down my diagnosis aside from OCD and anxiety. Once I turned 18, a psychiatrist whom I had only met once, misdiagnosed me with borderline personality disorder due to the self-harming behaviours. Other symptoms started appearing as well, such as mild tics, very large and uneven pupils, hypoglycaemia, and POTS.
When I was around 22, I got a streptococcal A infection from the self-harm, and I also had COVID. I was given IV and oral antibiotics. For about a month afterwards, I was finally doing better! But it didn’t last. A psychiatrist suggested to my parents that I move out and I would figure things out for myself. So that’s what I did. My service dog passed away tragically at that time as well.
I wasn’t functioning on my own and quickly became homeless, living with friends and sometimes going back to my family. I even experimented with hard drugs. Fortunately, the substance use got me off of all those medications that were making me so much worse. I felt like myself again, but due to my situation, I felt pretty hopeless.
I went to the ER begging them to help me. It was my last-ditch effort before I killed myself. Unfortunately, they refused to help me, saying it would be no different than last time. I was discharged and I tried to take my life. My heart stopped this time, and I almost didn’t make it.
Once I was discharged, I started researching. I discovered PANS/PANDAS. I had heard about it on social media, but to my knowledge, it was symptoms like paralysis and seizures, so I had never looked into it before. After reading about it, I couldn’t believe how much it sounded exactly like me! I went to my doctor and he agreed completely. He had to consult with a specialist, but finally, at the age of 24, I was diagnosed and started treatment.
My treatment involves long-term antibiotics; I’ve been on them for 6 months now, and a benzodiazepine as needed. The difference is night and day. My family and old friends are shocked when they talk to me now versus before. I went 15 years being misdiagnosed and I now have so much trauma from the way I was treated in these units and facilities. Nobody should have to go through that, and I hope my story can help others!
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Gabriella True
