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.