How I Tackle Grad School with Cognitive Problems from PANS

“How’s grad school going?” my friend from home asked.

“I mean—I’m glad I’m trying it,” I stammered, going on about a few highlights.

“But do you like it?” she pressed.

The truth is that I’d been afraid to ask myself this very question, because I was afraid to learn the answer….

But first, how is grad school going?

Continue reading “How I Tackle Grad School with Cognitive Problems from PANS”

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! 

10 Ways to Feel Less Hopeless When Chronically Ill

“I just can’t keep going.”

“I feel completely hopeless.” 

“How can anyone live like this?”

These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.

Continue reading “10 Ways to Feel Less Hopeless When Chronically Ill”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.

I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds. Continue reading “My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…”

Not About Symptoms: The Truth on PANS/Lyme Recovery

When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.

When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality. Continue reading “Not About Symptoms: The Truth on PANS/Lyme Recovery”

Do These 7 Symptoms Make College Impossible?

They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.

Continue reading “Do These 7 Symptoms Make College Impossible?”

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”