PANS + Lyme: Recovery and 8 Years of Misdiagnoses

I Am Not an Illness

Sometimes, I don’t know who I am anymore

It was 5:00 in the morning, the day’s homework wasn’t finished, and a test that I would surely fail loomed over me. My kitchen counter-top was covered in crumbs and empty wrappers, and I’d been spinning on my stationary bike for the last three hours. My laptop was opened to my class notes, but I had a major food hangover from the 4000 calories I’d consumed just hours before. Studying was near impossible.

As I realized I’d spent the whole night exercising and making calorie calculations rather than actually doing anything productive, I asked myself… What has become of my life?

At one point, I stopped biking and took my computer to the living room for a break for my exhausted body and mind. When I opened my Instagram, there, staring back at me, was a picture from a couple days before, in which I was beaming and glowing in a crisp dress following a successful presentation I’d given at school.

Seeing this happy person cut straight to my heart. How could I possibly have transformed into a binging monster less than 48 hours later? Why couldn’t I stop eating and just hold myself together? If only people knew who I really was—the girl that has Lyme disease as well as an eating disorder that’s spiraling farther and farther out of control—the younger students would no longer look up to me, and my professors would lose their respect for all I’d done.

But then, it hit me: that pretty, intelligent woman plastered to my profile page… That was the real me—not the girl who stuffs her face with junkiest binge food she can find into the wee hours of the morning, despite already feeling like her stomach might explode. Nor am I the girl that screams about wanting to die because of the psychological torment that an inflamed brain brings about.

Over the last ten years of PANS, I’ve so often felt like a person I don’t recognize. Sometimes, I’ve forgotten who I am, because it seems like I’m nothing more than an illness that’s taken over my mind and life. But I am not Lyme disease or PANS or an eating disorder… I am me.

In my worst times, I do my best to not think about who the real me might be, and I try to forget what life is like when I’m well—it seems too painful to realize everything that my illness can rob when it takes control. Yet this week, I’ve started to think that maybe, just maybe, it’s important to hold onto the memories of the better times, because they’re reminders that I am more than an illness or a set of debilitating psychiatric problems.

I don’t believe that PANS can ruin who we are—it can only obscure it. Beneath the brain inflammation and the torturous symptoms, there is still a soul and a personality that is waiting to resurface once healing comes. I may have PANS, but PANS doesn’t have me.

As I closed my computer, gathered up my notes, and packed up my backpack later that morning, for the first time in a long time, I felt hope that there will be a time when I can feel like the person in my Instagram photo every day—the woman that everyone else sees from the outside. Someday, PANS will hide me no more.

Comments on: "I Am Not an Illness" (8)

  1. A Fellow Panda said:

    Absolute truth here! We see the real you even when wen you’re writing about how PANS obscures your true self. The fact that you can even process it is amazing! My anxiety has been so high lately with no signs of infection triggering it. And there are not many ways to treat it while my baby is still nestled inside me. But above all, I am a loving person, a happy wife and mama, and soon-to-be college graduate. Not the anxious, paranoid mess that I can become. Cheers to you, friend. ❤

    Like

    • Thanks, Panda! Yes, you are so much more than the anxiety. 🙂 Way to go for hanging in there and getting through school and having a family ❤ Best wishes over the next few weeks of finals!

      Like

  2. Heather said:

    I know what you mean, even to the suicidalness. I cling to the memories of better days in hopes that I can get back there. And you’re right about PANS and Lyme obscuring you. I realizes that one suicidal night as I watched the (full — eek!) moon being hidden by the clouds, but always coming out again. That ull moon is me, is us Lymies and PANS/PANDAS people.

    Awesome post! Blessings!

    Like

  3. Melanie said:

    So beautifully said!
    You may have PANS but PANS doesn’t have you . . .
    So appropriate!
    You hang in there girl–you are doing the best you can do with what life has dealt you!!
    You’re such an inspiration to me & to many others, I’m sure.

    Like

  4. Very inspiring words, well done to the true you 😌

    Like

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