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.

When I last wrote, I was dealing with an uptick in PANS symptoms that I feared could turn into yet another life-altering relapse.  But by the time I went back to school, it had all died down. Lyme fatigue and the resulting crashes are still a big issue, but it seems that all the IVIG I’ve had has ultimately done its job of putting my worst PANS symptoms into remission: no more cognitive issues, mood swings, short-term memory loss, or tics.

It’s amazing to be able to think clearly and finally feel like myself!

So why is grad school still miserable?

Healing the brain inflammation didn’t fix all my problems and doesn’t mean I can’t get depressed due to life circumstances. When my mood started tanking with the start of the next semester, I thought I was unhappy with my program, or maybe I was frustrated I wasn’t focusing on a different sub-specialty in my field.  Or maybe I just didn’t want to be in grad school.

Any of those things could be reasonable and a simple enough fix, but instead, I’ve discovered that it’s something far worse, which I never anticipated:

I’m miserable because I resent that I’m still sick with Lyme—I can’t stand that being ill prevents me from getting more out of grad school.

Illogically, I procrastinate and end up sabotaging myself.  Deep down I want to succeed, so not giving my best effort leads to endless self-loathing and frustration.  But if I avoid my research as much as possible, I don’t have to face the unpleasant reality of my limitations.  There’s no way to win in this scenario.


What upsets me the most these days is dealing with Lyme crashes.  Any exertion the slightest bit beyond my limit, whether physical or mental, can leave me feeling exhausted and in pain as if I’ve caught the flu, and then I’m too ill to be productive.  As a former long-distance runner, I don’t know if I’ll ever get over the loss of my vitality. 

Now, I must always weigh the benefits of doing something versus how big a price I’ll have to pay.  Some days I’m pleasantly surprised that something doesn’t cause a crash, and others I’m shocked by how frail my body can be.  

Fortunately, I’ve improved enough in recent months that I was able to take advantage of a special professional opportunity last week. It went phenomenally. I spent the rest of the day riding the high of feeling like I might actually have a good life ahead of me and looked forward to getting back to my research.

But then the exertion of the three-hour event sent me into a Lyme crash, as I knew it probably would.  I was too weak to even walk to the food court next to my apartment for dinner.  All of a sudden, what I’d accomplished hours before didn’t matter: I realized that I was still a sick person, and that overshadowed all of my skills and successes. 

I plummeted into despair all over again.

Since that crash, although I physically recovered in a couple of days, I still haven’t been able to make myself touch my work.

The other night, as I lied in bed wondering how I could possibly let another day go by without getting anything done, I finally understood.  It wasn’t a cognitive malfunction.  It wasn’t disliking my work.  And it definitely wasn’t laziness. Instead, I realized that at the back of my mind, there’s always a whisper saying:

“Why bother with your research? You might get even sicker and not be able to finish! You’re already too sick to have a career anyway.”

I realized that every Lyme crash turns that whisper into a roar.  Whenever I crash, I go into panic mode, wondering if I’ll always have this incapacitating problem, and whether I’ll ever be well enough to have a full-time job and use my degree—which gets me so down that I can’t even make myself try.

At the same time, I feel guilty for not being able to focus on how amazing it is that I’m in grad school at all.  It was only fifteen months ago when “The Big PANS Relapse” affected my brain so severely that I couldn’t answer the simplest questions in class.  If it weren’t for my professors removing all deadlines for me and letting me catch up after getting treatment, I would’ve flunked out of college.

Yet here I am now, making straight-A’s in a top graduate program—the contrast is remarkable.  So why can’t I just be grateful that I’m better from PANS and move forward?  As bad as my Lyme crashes still are, they’re nothing compared to how intolerable and debilitating PANS was just over a year ago.  Why is a comparatively minor impairment making me this miserable?

I asked my therapist these questions a few days ago, and her answer was spot-on:

It’s because my mind is better that I can be frustrated my body limits me.

You see, when I’m at my worst with PANS, I’m so detached from myself and emotionally stunted that I’m incapable of comprehending how ill I am.  I’m too mentally compromised to miss the things I’m no longer able to do.  However, as I regain function, then I remember how much what I’d lost matters to me.  The better I get, the more I want to stay better—which makes it that much harder to accept that Lyme is holding me back now.

The reality is that I have no idea if or when I’ll finish healing from Lyme.  There’s indeed no guarantee that I’ll be well enough to hold a full-time job once I graduate—I’m certainly not at the moment.  It’s a legitimate question to wonder what the point is in getting a degree if I may never use it.

But I can’t think like that. 

I’ve already lost too much from my illness itself. Why should I let my fear of what may or may not happen steal any more?

It’s going to take some time, and more therapy, before I figure out how to get past the undertones of hopelessness from facing a case of Lyme that no one knows how to fix.  The last five years of cycling through relapse and recovery with PANS have also done a number on my ability to imagine I could ever be well permanently. 

The more time passes in my chronic illness journey, the more I wonder if sickness will always be a part of me. What if this is as good as it gets?  What if I get a job and then have to quit because I get worse?  And what if I never get the mental and emotional space to have a relationship, either?

Nevertheless, I only have this one life to live.  It may not be what I wish it were right now, but that doesn’t mean it can’t still turn out to be good. 

I have an opportunity to get this degree and reap the benefits of more learning.  Being sick doesn’t mean I deserve to be here less than anyone else.  I may not be able to stop the Lyme crashes, but I’m determined to not let the frustration of my limitations hold me back from the many things that I still can do. 

Despite an uncertain future, I’m going to move forward with grad school because I’ve realized that this is the path I want, and fearing the unknown has no right to stand in the way.

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Workplace image modified from photo by Renzo Fedri, Wikimedia commons.

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”

Announcement: PANS/AE/Lyme Teleconference Tomorrow!

Hi everyone, I’m excited to share that tomorrow (Saturday) is the launch of the first-ever teleconference support group for teens and adults with PANS, AE, Lyme and other similar/related conditions.  Let this be your official invitation!

Join me at 2PM EST (7PM GMT) tomorrow.

Call (605) 472-5395, and enter the meeting ID: 339705. 

Continue reading “Announcement: PANS/AE/Lyme Teleconference Tomorrow!”

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”

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

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!