Today, I live my life free from PANS psychiatric shackles and its medical mayhem. At this point, I’ve mostly forgotten where I came from and how sick I used to be. PANS no longer affects me… or so I think.

Years ago, I was able to lock away the feelings of terror and despair that were once my constant companions. I now choose to live in the present and do my best to make the most of this second chance at life I’ve been given. Why think about the horrors of the past when I can make a new and better future for myself?

But the truth is that it’s all still right there, churning beneath the surface and ready to start gushing out the moment I encounter a trigger. 

In the PANS world, we usually talk about “triggers” as infections and viruses that rev up the immune system and set off a PANS flare. Nowadays, my main triggers are not as much immune system problems. My triggers are found beneath the fluorescent lights of hospitals and in the words of unsuspecting doctors and nurses. 

My triggers are those situations that set off my PTSD and force me to relive the worst hours of my life.

When I was in the depths of PANS, had you asked me, I would have said I was suffering. I would have said I often didn’t know how I’d survive another day. In a flare, I would scream that I wanted to die because the pain was that bad. And yet, the thing about having an inflamed brain is that you may be unable to fully process what you’re going through. 

It was only after I started to get better that the full terrors of what I went through with PANS began to sink in and leave me grieving for the time I lost. Even then, it was so raw that I gradually put those experiences out of my mind and did my best to move on. I never let myself accept how awful living with PANS truly was because it was too much to process. Years later, it’s all come bubbling to the surface.

I now know that what I experienced at the hands of PANS was nothing short of horrific. 

I know because of how terrified I am of situations that I know will set me off––the thought of having to ever re-experience the nearly unbearable sensation of despair, rage, and panic from a brain on fire is too much to take in. I know because I’ll do almost anything to avoid my triggers, even avoiding needed medical care until the problem is serious enough that I can no longer ignore it.

I know because the last time a needle went near my arm, I spent the next forty minutes shaking and dissociating. The multiple weeks of IV steroids that saved my life in 2017 destroyed my veins and created an association where needles in arms put me right back in the tormented headspace of a life-threatening PANS relapse. The needle tells my brain that I’m sick again, and living in a waking nightmare, and this healthy version of myself that’s lucid enough to understand has to face the full horrors of PANS head-on.

I know because the moment I was asked to put on a hospital gown at an eating disorder treatment program three years ago, I practically went running out of the building in a panic attack. It was too much of a reminder of all the procedures I needed over the years during flares, when I had to put a gown on to do something painful that may or may not help.

I know because when a kind doctor told me an injury was “not clear cut,” I went to my car and cried for half an hour––not because of my physical pain, but because those were the exact words used over the years when doctors dismissed me without making any attempt at help. In that moment, I couldn’t see that this wasn’t just another dismissive doctor even when he was actually committed to being helpful.

I know because right now, it’s the afternoon before minor surgery for said injury, and I’ve spent the whole day panicking… In fact, I’ve spent the last two months, ever since I committed to surgery, panicking to varying degrees. I thought I’d worked through my anxiety and PTSD with my psychiatrist enough during this time, but then the nurse called to tell me I have to be at the hospital at 5:15 AM tomorrow. I lost it right then and there on the phone. The early time was a shock, and when I’m already on the verge of trauma-based panic, surprises push me over the edge. Every time I think I’ve worked through my trauma, it just comes right back.

I know how bad PANS once was, and how terrified I am to relive it, because I almost cancelled the whole surgery… I still might if I panic really badly tomorrow. I often think to myself that I’d rather just leave a highly treatable injury unaddressed than relive the time when my brain was on fire. I’d rather be stuck in physical pain than set off the psychological pain all over again. There is not much worse than the pain of an inflamed brain burning away the core of who you are, destroying your life and everything that defined you in the process.

PANS is brain surgery while wide awake with no anesthetic, but the surgeon is a maniacal disease determined to ruin you. You’re forced to watch and endure as it tears you apart, bit by bit by bit.

And yet, because I’ve survived this horror of an illness, I have to remind myself that few things are truly hard by comparison. More importantly, tomorrow, I won’t be in a hospital suffering from an agonizing brain illness while doctors look on and refuse to help. Tomorrow, I will be getting routine care for a routine problem under the care of an experienced surgeon who is actually one of the kindest doctors I’ve ever encountered. Tomorrow’s procedure has absolutely nothing to do with PANS.

Still, the intrusive thoughts are strong.

I try to visualize myself done with surgery, happy and relieved of pain, and all I can see is me panicking the moment I arrive in the pre-op area. Then I see myself putting my arm on the operating table and losing control when the resident starts with the antiseptic, because it’s entirely too similar to getting an IV. The combination of sensory stimuli (hospital lights, procedure room, and antiseptic) might send me right back to the headspace of the worst of PANS.

I have no fear of surgery itself—only of my own mind and the ongoing suffering it inflicts via trauma responses.

Truth be told, I might panic. I might have a PTSD episode. I might re-experience a traumatic time through emotional flashbacks. Nevertheless, I will keep reminding myself that this is not 2017. I fought that battle, and I won. Tomorrow I will take my anxiety meds. I will have a support person who knows my triggers stay with me until the very last moment. And most importantly, I will keep telling myself that I’m safe until I somehow believe it…

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Update: Read Part 2, “Do the Thing You Think You Cannot Do: Overcoming PANS PTSD Triggers”

Follow more of my journey at thedreamingpanda.com and @DreamingPanda1 on Twitter.