Just Like Any Other Adult!

I have had PANDAS/PANS for what seems like my entire life. I know there was a time before, but I cannot remember it. It has always enveloped me, grasping my brain and steering me around. There was a time when it hit me, so hard I crumbled apart, unable to walk straight, unable to interact with others, unable to live the life I knew. And I lived like that for too long. In those days, doctors did not diagnose PANDAS/PANS. They did not speak of it, did not read about it, and did not know of it. So, I suffered. I had all of the traditional symptoms: tics, OCD, anxiety, depression, etc. One day, my mother said she found a neurologist in New Jersey, far away from where I live. I was 14, my brain completely took over, and I was naturally suspicious. After all, I had been rejected by all the other doctors. Why should he be any different? But he diagnosed me. He knew. And my life changed forever.

After I was diagnosed, I better understood what I was doing. I still blamed myself, thinking I could control my actions, but I am getting better about accepting my condition. I decided that I would not let my body decide what I could accomplish, but I would decide myself.

So I started high school. That was difficult, but I persevered. My neurologist, who treated me in my hometown, got me IViGs. They completely changed my life. My symptoms lessened considerably. I was able to join clubs and got into the National Honors Society, neither of which would have happened before. I also received therapy, which helped as well. Then, when I was a senior, I decided to apply to college. I took my ACTs, and I got a scholarship! I was so excited and grateful. I started at the University of South Alabama in 2016. College was hard as well. For one thing, despite the fact that I commuted, I was away from home a lot. Another was that the academics were harder. I registered with Student Disability Services to receive appropriate accommodations and went to the psychology building for discounted counseling from South’s psychology doctoral candidates. The accommodations and the therapy really helped me. I don’t think I would have been able to graduate without them. Even though I was unable to have an official graduation ceremony due to COVID-19, I graduated on time with departmental honors and cum laude.

Now, I am able to pursue my dream job of being a teacher! I still struggle with my PANDAS/PANS, but I am able to work with it more. I have a neurologist that treats me, and he thinks I am doing incredible. I am just like any other adult now, thanks to the IViGs and therapy. Do not get me wrong; I have struggled so much with my PANS PANDAS that I have wanted to give up many times. I have cried so hard at my symptoms and feel defeated. But I do not want to focus on the negative because the positive is so much better. I want my journey to encourage people, not scare them, and I strongly feel that the good outweighs the bad in my life. I have so much to be happy about, and I always tell myself, “We can do anything!”


– Elaine