My Story

 I am currently 22 years old. I was diagnosed with PANS when I was 20. After doing a lot of reflecting and going through my medical files and everything, I have finally been able to put it all together. When I was 5 or 6 years old, I had pneumonia. After being sick for a while, I was perfectly fine. At least that is what we all thought. I don't remember a sudden shift, but I can look back and see that the way I saw life and the way my brain worked was clearly not okay. From the outside, I looked like an angry, miserable child who didn't care about anyone but herself. On the inside, I was suffering more than anyone could imagine. At one point, I woke up thinking that my family wasn't my family and was so paranoid about them being out to get me. When that finally went away, things changed to being paralyzed with fear in my bed all night (every. single. night.) because I just knew that there was someone in the house, and I was trying to form an escape plan and think of how to save everyone from this person. I was 7 when this started, and it went on for many years. As ridiculous as it sounds now, that was so real and incredibly terrifying. Of course, that was just one thing. I wish that was the only thing. Every millisecond of my life has been taken over by these insane intrusive thoughts. Every time I heard a siren, I just knew that someone I knew had died or was in critical condition. Every time I heard a fire truck, I knew it was because I had left my straightener in. Even if I hadn't used it in days. Every time someone left the driveway, I just knew that they immediately got into a horrible car accident.

Insane. Consuming. Terrifying. 

These intrusive thoughts destroyed me. And still do to a certain extent. And I know that anyone reading this who hasn't suffered from these is probably thinking, "So what? It's just a thought." It is so much more than just a thought. These thoughts are so real and so serious that they consume and destroy you. 

I only went into so much detail on that because OCD is, I think, the main symptom in all of this. Other symptoms I had were severe anger issues, mood issues, a lot of anxiety, and panic attacks that I had never experienced before. My grades dropped, and I had a very difficult time with school even though I knew I was a smart kid and a good student. I became severely depressed, and to be completely honest, I'm not sure how I got out of that. I mean, I still am and probably always will be, but the level of depression and how much I didn't want to be here anymore was so scary and still scares me just thinking about the past. Something I plan on talking about is what this disease has caused me to do to myself. After doing a lot of reflecting, I can differentiate between "normal" depression and this whole other area of uncontrolled actions and emotions due to having PANS. There were many times when I was severely depressed ("normally") but didn't want to do anything, but the disease in my brain said otherwise. Anyway, that's all really sad and depressing, so I'll move on.

The other half of this is Lyme disease. I was diagnosed with juvenile arthritis when I was 10. This was after years of being told I had "growing pains". Up until a few years ago, I had never found a tick on me, so I would guess that somewhere around 8 or 9, I got Lyme. I was so sick, and every single year, I'd be out of school for two weeks at a time at least twice a year and then go back but still be feeling like crap for the times between. I was always in so much pain, especially in my knees and wrists. It was humiliating to be seen as the kid who's faking injuries even by the school nurse who thought I was faking everything. I was in so much pain for so long. When I was 16, I think my body just completely shut down on me and basically demanded that we figure out what was wrong. In October of my junior year, I had the usual sickness that only got worse after those first two weeks. I completely shut down and started sleeping for 24 hours straight. 4 pm to 4 pm. And I wasn't awake the days in between. On average, I would sleep about 18 hours a day. When I was awake, I was in the worst pain of my life and just felt like absolute garbage all of the time. It took 3 months of this for someone to finally think to test for Lyme disease. It, of course, came back negative, but there were 7/10 bands or whatever. This was amazing news. I finally figured out what was wrong with me. Hahahahhahah.

Wrong.

This only started a whole new hell. I get the meds and am told that I'll be fine. I finish the meds and I'm definitely not fine. I am failing school, I don't have any friends, and my family doesn't exactly love having me around because remember the whole PANS thing is still here. I'm still a very angry and miserable kid, so I don't blame them at all. Basically, to sum it up, it was constantly taking meds and then being accused of faking it because the meds worked, and I just didn't want to go to school or get a job. I had no one for so long. It has been the most lonely, isolating, and painful experience, and I really just hope to help prevent others from going through the same things. 

I hope this was an okay look into things, and I hope you stick around to hear more in-depth stories that will help you have a better understanding of these diseases, whether you yourself are going through it or someone you know.