The Criminal No One Can Stop: When Illness Is a Crime Scene

“Choose one,” the masked man growled as I stood in the doorway, frozen in fear.  “It’s either the painting or the pearls.”

I tried to get the words out, but the mere sight of the crowbar in his hands and the open window had already stolen my voice.  I reached for my purse to find my phone, not daring to lose eye contact, but before I could call 911, he whisked out a lighter from his back pocket.

“You have five seconds to pick one or I’ll burn the whole place down instead.”

Continue reading “The Criminal No One Can Stop: When Illness Is a Crime Scene”

What Mental Health Awareness Means When Chronically Ill

As someone with a chronic illness that was once misdiagnosed as a psychiatric disorder, but who also does have mental health issues, it’s a constant balancing act trying to understand my brain while convincing doctors that mental illness is only one of my problems.

For eight years, the conclusion was that I was sick because I was depressed.  (Since when did depression cause visible joint inflammation?) Even as a kid, I knew better than to believe that.

I was only thirteen the first time a doctor misattributed my physical illness to my poor mental health, but I knew that I knew myself and my body better than a doctor who’d just met me:

“I’m not sick because I’m depressed,” I growled.  “I’m depressed because I’m sick.”

Continue reading “What Mental Health Awareness Means When Chronically Ill”

The One Thing That May Never Recover After My Chronic Illness

With Easter Week and Passover upon us, I’ve found myself face to face with the very thing my chronic illness has changed the most: my faith.

For years, I would’ve told you it was the most important thing in my life.  All through high school, I was a leader in my youth group and involved in several ministries.  I used to read scriptures daily because I wanted to learn more about God.  I used to pray often because I wanted to be closer to Him.  I even used to be enthralled by dense theological tomes, started to teach myself biblical Greek, and at one point considered going into ministry full-time.

But then I got ill.

At seventeen, I suddenly developed an extreme case of OCD. I’d already had OCD smoldering in the background of my mind for six years, which I’d concealed from numerous therapists due to shame, but out of nowhere it became incapacitating and all-consuming.

Continue reading “The One Thing That May Never Recover After My Chronic Illness”

The Plot Twist I Never Expected… And How I’ve Learned to Accept It

After just one stride, I knew something wasn’t right.  I’d always run through anything—be it sickness, rain, or depression—but today was different.  Today, in the midst of training for my second half-marathon, my whole body felt like it was made of lead, and no matter how hard I tried I could barely pick up my legs.

I shuffled down the road for two miles before the frustration of a terrible performance got the best of me, and I dragged myself home, now dizzy from exhaustion. I went to bed in the hopes that I could sleep it off… Continue reading “The Plot Twist I Never Expected… And How I’ve Learned to Accept It”

Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:

Is PANS a form of autoimmune encephalitis, or is it something else?

Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore.  I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.

How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other? 

Continue reading “Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS”

Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?

Last month, after finishing my first semester of grad school, the dread of having to come back in January to do it all over again drowned out any sense of accomplishment.  Although I liked my colleagues, the truth is that I was miserable so much of that fall.  And until now, I didn’t know why.

Continue reading “Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?”

The Questions No One Should Have to Ask: Life on the Verge of Relapse

As I opened my eyes to the morning sunlight peeking through my blinds, for a feel blissful seconds, I forgot the many reasons I shouldn’t feel as calm as I did in that moment.  But not a minute later, it all came rushing back, and my stomach did a somersault.

I rolled over and saw a missed call from my infusion pharmacy, and all at once I remembered the horrible quandary I’m in.  I remembered the unfortunate events that led to it.  And worst of all, I remembered that losing access to monthly IVIG treatments could mean I was on the verge of a relapse that would make me lose my mind. Continue reading “The Questions No One Should Have to Ask: Life on the Verge of Relapse”

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!