What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS

“There’s no cure.  No one knows if you’ll ever get better.”

The realities of my situation swirled in my mind as I tried to make sense out of what was happening.  None of it was news, but somehow the word hit me harder than ever before:

Encephalomyelitis

“With the encephalomyelitis…” my doctor began at a recent check-up, but I have no idea what came after, because that word was all I could hear.

Continue reading “What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS”

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.

The kind of OCD I had was “pure-O” OCD, which involves repeated unwanted thoughts and invisible mental compulsions. And because OCD tends to go after things you care about, for me it mainly took the form of constant blasphemous intrusive thoughts that I found appalling, and mental compulsions to “cancel” them.

The thoughts would pop into my head in an unending cacophony from the time I got up to the time I slept (if I was lucky enough to sleep), forcing me into a perpetual panic over whether or not I’d carried out the neutralizing compulsions or not.  I thought if I didn’t do my compulsions correctly I’d be committing an unforgivable sin.

The mental anguish of my extreme OCD was indescribable.  It was all of the worst feelings possible all at once: a despair so dark that you feel like you’ve swallowed all of hell inside of you, and a terror that makes you want to run and scream and hide from your own mind.  But you can’t escape it—you can only hope that somehow you can endure it.

It’s been six years since I lived in this OCD agony, but the white-hot pain of a brain turned against itself is forever burned into my memory.

In fact, it’s one reason my faith is so hard to hold onto anymore.

I suffered through debilitating OCD for several months until I got through intensive Exposure-Response Prevention therapy.  I’d need several more posts to discuss that process in-depth, but I’ll sum it up by saying that it helped me get my mind back—that, and learning to separate what was my OCD versus something that I actually believed in spiritually.  It was like a revelation when I found out I had a treatable mental illness and wasn’t a terrible or crazy person.

My faith set me up for religious OCD, but it was also my faith that got me out of it. I leaned into it like never before in order to separate out the lies of my disorder from the truth.  Not surprisingly, during the ordeal, I would’ve told you that my faith grew stronger than ever despite the constant persecution from my own brain.

But unfortunately, my struggles didn’t end there—extreme OCD was only the beginning of a litany of neurological and psychiatric problems that would ensue.  As it turned out, my sudden OCD was caused by an infection-triggered autoimmune reaction in my brain called PANS, so treating the psychiatric symptoms with therapy did nothing to stop the physical disease from destroying me.

Less than two years later, PANS reared its ugly head again in new, unthinkable ways. I suddenly developed tics and involuntary movements all over my body that were as invasive and constant as the intrusive thoughts had once been.  I lost the ability to walk.  I became afraid of food and stopped eating.  I dozed in and out of consciousness all day long, no matter how much I slept at night.  I became suicidal to the point I was watched 24/7.  Most of all, I lost my personality and everything I’d thought defined me…

And what was left of my faith by then began to shatter.

Thanks to my parents helping me get a diagnosis of PANS and treatment with IVIG, my symptoms improved over the next few months, but my faith only weakened as I regained the cognitive skills that allowed me to finally process what had happened.

That’s the paradox of recovering from PANS—when I’m at my worst I’m too mentally impaired to understand the full horror of my illness.  I’m certainly aware how miserable I am, but I lack the insight necessary to realize the full extent of the damage to my life—or I’m too depressed at that point to care.  But as I get better, the reality sinks in, and I can truly grieve everything that PANS has stolen.

It’s no wonder my faith got worse as I got better.  It was only as I got well that I regained enough intellectual capacity to realize I could no longer reconcile a loving God with the level of suffering people with PANS and OCD and any number of other things endure.  Yet my continuing to believe in a God I’m mad at is fraught with existential conflict.

A few months into treatment, as I was talking to someone at church about how much my condition had improved, he told me I had a great testimony of God’s healing.  I smiled and nodded, trying to believe it, but the reality was that the whole nightmare had left me wondering if God even existed at all.

Some people have a faulty expectation for those of us who have been through a hell they can’t imagine—they think of us as super-saints that have come out of purgatory, stronger in conviction than ever.  For some, this may be the case, but for others, our trials leave us wondering if we believe in anything at all. 

We’re left spiritually broken and in need of people to surround us, free from presumptions and trite sayings, showing us with their actions the love of God that we once knew so clearly.

Today, it’s been three years since I went to church regularly—at times because I’ve been too physically ill, but at others because it reminds me too much of my mental illness.

I now see that a lot of my fixation on spiritually for all those years, even before my OCD got extreme, was wrapped up in my OCD in an unhealthy, obsessive need to be sure I was a good person.  For me, spirituality wasn’t always the source of comfort that many people experience it as—sometimes it was an involuntary way for me to quell an ever-present worry that I wasn’t good enough.  But now that I know what OCD is, I have to reckon with how I could practice my faith without falling into those same traps.

I do miss being part of a community and feeling connected to something bigger than myself, but the memories of having religious OCD have made me associate religion with the pain it once caused.  There have been days when all it takes is for me to open a Bible to trigger sobbing and panic.  Even though I believe in something, I avoid thinking about it because I’m sure the minute I try to get close to God I’ll end up in OCD hell all over again—and I still have anger about all of it buried deep down.

The ERP therapy got rid of my OCD, but until recently I never had therapy to deal with the trauma of having such horrible illnesses barge into my life out of nowhere and tear me to the core—I will likely be dealing with the emotional fallout for years to come as a result.  And it could be even longer before I’m able to forgive God for allowing the whole ordeal to happen in the first place—not just to me but to hundreds of thousands of others.

Ultimately, the way I made some peace with what I’ve been through was to accept that there was no inherent meaning to it, and no deity brought it about—bad things simply happen at random to both good and bad people every day as a consequence of the world we live in.  But it is always my choice whether I feel sorry for myself or try to make something good come out of it.  For some reason seven billion of us are stuck to struggle along on this tiny planet, and I figure the best I can do is use my experiences to help others while I’m here.

I haven’t figured out where, if anywhere, this fits into believing in God, but the reality is that no one has made sense of the human condition—if they think they have, they’re fooling themselves.  I would argue that, by definition, faith must be something that has no concrete proof, or else you wouldn’t need “faith” to believe it’s true—and it is therefore expected that you’ll never answer all of your burning philosophical questions in this life.

As time has gone on, living with chronic illness has taught me to accept uncertainty and unfairness as normal parts of existence, so I’m finally getting to a point where I’m willing to seek out spirituality again.  And this Sunday, I may actually set foot in a sanctuary once more.

Nevertheless, after living with PANS and OCD, I’ve seen too much to take everything at face value with simple faith as I once did—but I’ve also seen too much to give up on a higher power completely. 

I used to wish my faith could go back to what it was to me before I got sick, but now I’ve realized that would be impossible.  People change.  Life happens.  Perspectives shift.  But the beauty of faith lies precisely in the possibility that, whatever chaos befalls, its timeless, ancient wisdom can be adapted and rediscovered in new ways again and again and again—belief was never meant to be a static endeavor.

No, I’ll never recover my faith to what it was before my OCD and PANS, but I don’t have to—it’s okay that it will have evolved, and I still hold out hope that after the mess of the last six years of illness, there is yet peace and meaning to be found for the future.


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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”

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?”

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””

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!