My Illness Made Me Feel Like a Freak: Why I’m Done Trying to Be “Normal”

For the last twelve years of being sick, I’ve been embarrassed by all of the ways my disease makes me “different” from everyone else.  I may try to fit in, but I’m always waiting for the moment when people discover the truth about me.

From not being able to attend public high school, to going to therapy and appointments instead of hanging out with friends, to living with OCD and chronic pain, my experiences as a person with PANS and Lyme have isolated me from my peers when all I wanted was to be “normal” and feel accepted. 

When I’m ill, my disease makes me live inside my head.

In those times, I hardly stand a chance at a “normal” social life, because I exist in a realm that makes some sense to me but no sense to anyone else.  My thoughts go a hundred miles per hour, but if I try to communicate them with others, no one really understands what I mean—and I’m sure that I don’t interpret the world around me quite as others do.

An old journal I found from March 2011, when I was fifteen and undiagnosed, is particularly revealing:

“I feel like I live in a whole other world.  I sometimes have trouble following a conversation or picking up on things.  I often feel like I need to be shoved into a tub of ice-water in order to get out of my mental fog.  No matter how much sleep I get, or how many cups of coffee I drink, I still feel like that.  That’s the main reason I feel out of touch.”

But even as I get better and feel completely part of the world around me, and my illness impinges on my life less and less, I’ve realized that my confidence was a casualty of what happened to me—so getting better hasn’t released me from the predicament, either.

You see, PANS has a way of making you do and say and think strange things that you never wanted, and the problem is that you’re always lucid enough to know they don’t make any sense.  You can’t help your symptoms, but because part of you is aware of how odd they are, you start to think they’re all your fault and a reflection of who you are.

And who wants to be friends with the person that does things like drink shower gel, cover her shoes and the entire floor in plastic wrap, spend hours stuck in one position, talk about wanting to die, and get mad at you for things you didn’t do?

In a flare, I feel like a crazy monster.

Even in better moments when I can leave the house and appear “normal” from the outside, I’m sure everyone will somehow figure out I’m a freak and want nothing to do with me anymore.

After being sick for so long, the notion of being a “freak” is so internalized that, even now, I’m still afraid if anyone gets to know me, they’ll see what I really am and not want to be friends anymore.

However, at this point, after six months of the “Duke Autoimmune Encephalitis Protocol” (monthly 1 g/kg IVIG + 1 g Solumedrol), I no longer think of myself as a person with a serious illness—I’m just “me;” I’m in school full-time, holding down an assistantship, and living on my own (albeit in student housing).  On the surface, it’s easy for me to “pass” as typical now.

Nevertheless, there are plenty of reminders in the way I live my life that I’m not really a “normal” twenty-something yet.  I still follow a restricted diet, have intense monthly IV infusions, take 20+ pills per day, go to bed early even on weekends, and see more medical professionals in a month than most see in a year.

I’ve forgotten how strange my life really is because of my illness, so when I spend time with others my age who don’t do these things, the juxtaposition confronts me with a truly awful part of my existence that I wish weren’t there.  Of course I’m incredibly grateful that my treatments and lifestyle changes are healing me, but they remind me that I’m “different,” and sometimes that brings me down.

I have a few friends here at school that I don’t know very well, and no one knows of my illness.  I feel like anyone who wants to be close to me will have to learn a little bit about the battle I’ve been fighting for the last few years…  But what if they think I’m a freak when they find out I’m not “normal”?

And that makes me ask myself: would anyone want to befriend a chronically sick nerd whose main hobby (this blog) she can’t discuss? 

Would anyone want to hang out with a twenty-something who can’t drink, can barely exercise, and can’t participate in any kind of outing that lasts more than a few hours? 

Would anyone want anything to do with me when they find out I lost my adolescence to this disease and am therefore, in many ways, more like a teenager than an adult?

But you know what the answer is?  Yes—they already do.

My illness doesn’t define me.  Even if I can’t believe it, the friends I have like me for the person I am—not because they mistakenly think I’m “normal.”  I’m starting to believe that when the time is right, and I share my story, they won’t think anything less of me.

For so many years, I wanted desperately to live a “normal” life with a “normal” brain.  Though I still hope there will be a day when I don’t have to think about my health so much, I’m not ashamed of what makes me “different”—my story is part of who I am. 

The world has enough “normal” people—but only one you.  Why be “normal” when you can be who you are, with all of the unique experiences and perspectives that no one else but you can bring?

Being unique is what’s cool. Normal? What’s normal? A setting on a washing machine. No one wants to be that.

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On the Radio Today! A Special for PANS Awareness Day 2018

Today is PANS Awareness Day 2018.  There’s so much I could write as someone who has lived with PANS for most of my lifeeven more than I’ve already said in the 100,000+ words I’ve written in previous posts on this blog.

However, I’m doing things differently this year, and instead of posting about PANS awareness, I’m going to speak on national talk radio.  I’ll be interviewed on Worcester, Massachusetts’s John DiPietro show along with some New England PANS Association board members and a PANS parent. Continue reading “On the Radio Today! A Special for PANS Awareness Day 2018”

Why Failing in Grad School Proves I’m Doing Great

“You need to get yourself together,” my professor warned, staring at me with utmost concern.  “You have to do better than this if you want a career.”

The words stung and burned into the darkest recesses of my mind, not because I was taken aback, but because I knew on some level they were true.  They were the doubts that nearly kept me from applying to grad school in the first place, and the soundtrack to every moment when I’ve wondered if I should even be in this field.

Maybe I’d made a huge mistake after all.

When people ask how I’m doing lately, I have no idea what to say.  On the one hand, I’m successfully living on my own again, and my PANS symptoms are 95% better.  On the other, I’m easily the least effective graduate student in my group.

I feel like I’m the runt of the litter, when my professors thought they were hiring a pure-bred show dog.  My undergraduate mentors apparently wrote glowing recommendation letters, but now that I’m here, I’m barely meeting these new professors’ demands.

After that conversation with my professor, I was utterly deflated.  I’d been on the verge of a breakthrough, excited to find where it would lead, but now I wanted nothing to do with my work.  I went home and cried, longing for the days at my old school when my professors understood me so well and always gave me the encouragement I needed.

I tried taking a walk around campus, I tried calling my parents to vent, and I even tried going out with a friend that night.  But nothing could lift the storm cloud that was now enveloping me.

IMG_6013That familiar depression—the monster I’ve fought for over half my life—had suddenly crept back in to eat me alive.  This was always how it began.  I’d been on such a long streak without a full-blown episode, but here it was to taunt me all over again…

I couldn’t leave my room the next day.  I spent the following day alternating between crying and scrolling through Twitter (but not tweeting anything because I was too exhausted to think of anything to say).  I eventually went to the lab to attempt some work, but just looking at it brought on a panic attack, so I gave up.

Let’s just say that I felt utterly pathetic and unsure why in the world I ever imagined I was cut out for grad school.

The problem with having PANS is that every time I have a bad mood or get extra anxious, I worry that I’m relapsing.  The disease attacks the brain, so the symptoms are psychiatric and neurological ones like depression, anxiety, OCD, involuntary movements, and too many others to name.  It can be easy to mistake it for “garden-variety” mental illness, especially in the early stages.

And for me, most of my PANS flares start with sudden, severe depression similar to what I experienced last weekend.  I’d also been getting other symptoms in the days leading up, like more difficulty sleeping and even some tics, which often proceed my flares, too.

Was this going to be like every school year in my undergraduate career, cursed with a major relapse at some point?

But then came Sunday.

As difficult as it was to make myself do anything, since I was being far more unproductive than usual I forced myself to get in the car and leave town for an afternoon.  I had so much work hanging over my head, but I needed to get away from it all just for a bit.

And you know what happened?

The darkness lifted. 

SunriseI felt like myself again by the time I returned to campus.  I got a renewed fire in me to prove everyone wrong—to prove that I really can do a strong thesis and have a solid career.  So I went home and got back to work.

Although the fear that I’ll never be good enough still stings, I’ve realized that something incredible happened because of that meeting with my professor: I had a somewhat “normal” response to a painful situation—the depression I experienced wasn’t from my brain being inflamed like it is in a true PANS episode.

It turns out recovery is complicated.

Many people think that recovery from PANS means a person has no mental health issues anymore, nor anything that could remotely be mistaken as a symptom.  Perhaps there are cases like that, particularly if they were caught early and treated promptly, but I think this is too idealistic an expectation for a lot of us who went years without care.

Even if my depression and anxiety were initially caused by an autoimmune attack (PANS) years ago, it seems to me that because the disease taught my brain those maladaptive patterns for so many years, it still takes less of an emotional trigger to send me back into them now—but now my problem has become psychological rather than autoimmune. 

It’s not surprising at all that I fell so hard and so fast into depression after what happened the other week—but the fact that a day out rather than more antibiotics or steroids broke through the darkness proves it had nothing to do with my disease this time.  I’m just a struggling grad student now, and no amount of Prednisone can fix that.

At this point, a year since I re-started treatment following a catastrophic PANS relapse that left me as a shell of my former self, I dare say that for all practical purposes, I’m better… 

But “better” is a tricky concept to define when you’re talking about a condition that attacks the brain, changes your personality, and forces you to relearn every aspect of normalcy.  Better doesn’t mean you don’t have any kinds of problems.

The reality is that I’ve just spent an entire year living at home and focusing on nothing but healing my brain—and for all I know, it’s still healing since the ability to stay on task and manage time can be one of the last things to improve.  Either way, though, it’s no surprise that being on my own and starting full-time grad school all of a sudden has been so jarring.  No wonder I’m having a hard time, since I’m coming from a vastly different world than all of my healthy peers fresh out of undergrad.

When you’re going back to school after a serious illness, you have to be patient with yourself and give yourself credit for showing up—even when others say you’re not doing a good job.  Don’t listen to them—you’re doing a fantastic job living the best life you can given the circumstances.

If you’re like me, you might be ready to go full-speed and leave the sick days behind, but it takes time to relearn your limits and adjust to a new life.  I’m learning that, no matter what anyone says, I have to be patient and kind to myself.

I’m happy to say that things are starting to improve since that conversation with my professor, and I’m beginning to find my footing.

No, I’m not the most efficient worker, and perhaps by those standards, I’m still a runt.  But you know what?  Sometimes the runts grow up to be the best dogs because of their differences.

So these days, I’m standing tall, and I’m proud of what I’m doing…  I hope others will soon be, too.

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P.S.: I’m tentatively going to appear on national talk radio next week for PANDAS Awareness Day on October 9th.  Stay tuned for more details on when/how to listen! 

Interview with Me Tonight: A Special Announcement

Hi everyone, I’m interrupting our regular programming to let you know I’m speaking on the Stanford PANS Parents Support Group teleconference tonight at 5:45 Pacific Time!

You don’t have to be in California to listen.  You can hear it by calling 1 (650) 724 9799.  International numbers are available here.  The meeting ID is 649 394 165.

Dr. Frankovich from the Stanford PANS clinic will be conducting a Q&A at 5:45, and then I speak around 6:30.  I’ll be sharing my story, some encouragements, and some things I wish I could’ve told my parents when I was at my worst.

I hope you’ll join me!

8 Essentials for University Success with a Disability: How to Build a Bulletproof Support System

I have a disability.

I never thought those four words would describe me, especially at twenty-three, but in my first few days as a graduate student, they’ve become a heavy truth I have no choice but to accept—and at the same time, they’ve turned into a statement of empowerment.

Continue reading “8 Essentials for University Success with a Disability: How to Build a Bulletproof Support System”

When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery

In the last couple of months, I’ve had a breakthrough in my recovery.  After being mostly couch-bound since January, I’m now able to run.  And my cognitive abilities have improved so much that I just finished a small project.  So many things I’ve hoped for have become reality!

I thought I’d feel nothing but elation if I ever got back to this point, but instead, now that I’m here…

I’ve found a dark side that no one wants to talk about.

Continue reading “When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery”

These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

Brain MRI.jpg

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”

4 Things I Learned from 4 Years of Blogging… And an Announcement!

What in the world have I done?!  I thought to myself.

A wave of panic ran through me, and my heart began to pound as I stared back at the computer screen.  I couldn’t believe it finally happened.  I’d exposed myself before the whole world—my life story, in front of any eyeballs that landed upon it.  Despite everything in me saying I shouldn’t be sharing so much, I’d just published the first post on this blog.  But there was no turning back now. Continue reading “4 Things I Learned from 4 Years of Blogging… And an Announcement!”