Hi! My name is Skylar, and I was diagnosed with PANS in October 2023 after struggling with it for around 10 years.
I was 7 or 8 years old during my onset, and no one could figure out what was wrong. I struggled to eat; I had delusions, OCD, severe anxiety, and depression. I remember going to the doctor’s a few times and ending up admitted to the hospital once, but despite my struggles, nothing ever came of it. My PANS got much worse after getting sick in early 2022, triggering an onset of even more dangerous physical and mental symptoms. I was in and out of the hospital for 3 years, seeing almost every type of doctor you can think of. I ended up with a list of diagnoses – most of which turned out to be wrong.
I knew there was something else going on, but it seemed like no one listened to me. I felt helpless and angry for a very long time. Knowing something is extremely wrong and knowing your life is at risk because of it, yet not being listened to by a system that is supposed to help you, is terrifying. After years of advocating for myself and getting the same disheartening response every time, I was very close to losing hope. The summer before I was diagnosed, all I wanted to do was give up. But I knew that even if it felt like my fate was sealed, there was still a chance that something could change – and it did. When I found my current doctor, a naturopath who specializes in PANDAS/PANS, I felt genuine hope for my future for the first time in years.
Getting my diagnosis saved my life.
Even though I still have a long road ahead of me for recovery, just being listened to, getting the correct diagnosis, and finding this community has made my life a thousand times better. For the first time in so long, I don’t feel like I’m dying; I feel like I’m finally starting to live. I want other people who went through a similar situation to feel the same, and I want people who recently got PANS/PANDAS to be able to find help faster. So I took to social media and started making posts about PANDAS/PANS, and I try to get involved in as many awareness/advocacy events as I can.
My dream is to attend medical school and become a doctor like mine so that I can help other people dealing with this condition. I’m raising awareness and advocating in hopes that the patients I see will not have been waiting for years by the time I graduate. I want to see patients get help immediately.
My story now is much happier than it was before, but I’ll never forget the feeling of pure helplessness I felt before my diagnosis. I can’t go back and change the past, but I can help change the future.
If anyone reading this has ever felt this way or had the same experience, the biggest advice I can give you is to not give up. Even when it feels like there’s no point in trying or that things will never get better, don’t give up. There is always hope, even when it’s hard to see.
Gabriella True
