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”

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? 

So after weeks of bouncing from doctor to doctor, I was diagnosed with autoimmune encephalitis (AE).  My immune system had mistakenly attacked part of my brain instead of the Strep and mono that I’d recently caught.  The rogue antibodies went after my dopamine receptors and lead to symptoms that mimicked mental illness.

Since my diagnosis, I’ve endured eighteen rounds of IVIG and month after month of steroids which have put my symptoms into remission far more effectively than any medication intended to treat the seven individual diagnoses I’d received: Depression, Anxiety, Obsessive-Compulsive Disorder, Anorexia, Tourette’s Syndrome, Narcolepsy, and Periodic Limb Movement Disorder.

The immune-based treatments I underwent took me from being a shell of my former self when my disease was at its worst, to a functional full-time grad student holding down an assistantship today.

But there’s a problem: the AE doctors don’t believe me—and they’ve all been doctors practicing at reputable academic hospitalsThey don’t think my condition is real because it doesn’t show up on the combination of tests used to diagnose other known forms of AE.  They’d rather label me with Bipolar Disorder or Psychotic Depression and drug me for the rest of my life with medications that have never touched my symptoms.

The trouble is that mine is a particular kind of AE called PANS, which many mainstream autoimmune encephalitis doctors do not consider a form of AE.  For too many specialists (though thankfully not all), it seems that if it doesn’t fit into their neat diagnostic boxes and pre-conceived notions, then it’s not worth their time to figure out.  I’d like to think that any informed doctor would at least know by now that PANS is a real condition, whether or not it’s AE, but sadly this hasn’t always been the case.

So on top of debilitating symptoms, I’ve not only had to fight to get better, but I’ve had to fight to find doctors who acknowledge that my disease even exists.

And the sad thing is that this is true for nearly everyone who has PANS.  The dogma is that if you don’t have a kind of autoimmune encephalitis that medicine knows how to test for, then your symptoms must be behavioral or psychological.

A while back, I got a full autoimmune encephalitis workup just to be sure I hadn’t had a different form of AE for all that time. I hoped it could reveal why my case has been so persistent.  I endured an EEG, epilepsy-protocol MRI, extensive blood work, and a spinal tap in the hopes of gaining insight into the symptoms that have plagued me for years.  But guess what happened?

Nothing in my results showed any evidence of brain inflammation. 

According to the “AE expert” I saw, I don’t have autoimmune encephalitis, and I should never have had IVIG or steroids. This person also informed me that I couldn’t have PANS because I’m not “pediatric”—an assertion with no basis in the current understanding of PANS.

Truth be told, it wasn’t until now that I’ve been able to recover from the gas-lighting I endured at the hands of this doctor.  I was so confused and angry that I began to wonder if I really am just another psychiatric patient—what if five years of successful treatments with steroids and IVIG were nothing more than placebo effect?  What if this doctor was right?

But on this World Encephalitis Day, I’m going to throw a grenade into the rigidity and bias that plague too many autoimmune encephalitis doctors, impede scientific progress, and prevent everyone like me from receiving their help:

You don’t know everything about the brain and the immune system.  You don’t have a monopoly on inflammation causing mental illness.  You can’t test for every medical condition that can affect the mind.

The reality is that mental illness is a symptom of a physical illness that science doesn’t yet know how to quantify.  The mind doesn’t exist outside the brain, and the brain doesn’t function without the body.  Even emotional trauma has been shown to alter brain structures, so an argument could be made that all mental illness is ultimately physical in some way.

Many doctors readily believe in the mind-body connection, in which mental illness can lead to physical symptoms, but have their heads in the sand when it comes to the body-mind connection.  It’s preposterous to espouse autoimmune encephalitis as the only condition where the immune system affects the brain and results in psychiatric symptoms.

And why do doctors accept that elderly people can lose their minds when they get an infection, but when a kid gets Strep and suddenly flies off the rails it’s just a coincidence?  Why could infection only trigger neuropsychiatric symptoms in older adults?  Why aren’t younger people’s sudden mental illnesses suspected as having an infectious cause like they would be in your grandmother?

Therefore, labeling people with PANS who don’t show signs of “classic” autoimmune encephalitis as mentally ill is nothing more than a biased cop-out.

The truth that no one is willing to accept is that there is more medical evidence that PANS/PANDAS exists than any mental illness.  Have you ever heard of a patient getting a blood test to figure out whether or not they have depression?  Imagine the (rightful) outrage if someone with severe depression was told their condition wasn’t real just because their blood work was normal!

Every psychiatric diagnosis is made only through observation and/or a clinical interview, yet mental illness is widely accepted as real and valid, as it absolutely should be.  And yet PANS, another clinical diagnosis, is not.

If the AE doctors are going to dismiss PANS on the grounds of it not showing up on medical tests, then by that logic they ought to do the same for all mental illnesses.  But somehow it’s common knowledge that mental illness is as real and devastating as any other medical condition. 

Why isn’t PANS just as accepted?

When there are thousands of people like me whose “psychiatric” symptoms are proven to correlate with infections and a weak immune system, as shown in blood tests—and who improve with antibiotics, steroids, and IVIG, time and time again—it is bad science to dismiss the physical evidence in exchange for psychiatric diagnoses with no known biomarkers. 

Moreover, for those of us with PANS, psychiatric treatments often make our condition worse or simply don’t work.  I dare you to find a single person who would rather endure invasive procedures like IVIG instead of the psychotherapy that tends to help many psychiatric illnesses.  No one wants to travel hundreds of miles to PANS experts and pay out of pocket for treatment when, in most cases, there are local mental health services covered by insurance.

And in reality, the majority of people with PANS do try therapy and/or psychotropic medications, and though they can be good tools for some, they don’t do enough to bring us back to health. We have a physical, immune-related illness, so we have no choice but to go through the back doors of the medical system to treat the root cause.

So is PANS a form of AE, or is it not?

It may very well be that PANS is sometimes a kind of autoimmune encephalitis that doesn’t show up on the standard AE tests currently used—after all, most AE experts readily admit there are plenty of autoimmune antibodies we can’t yet identify.  Or maybe in other cases PANS is something very similar but better classified as separate from AE.  Either way, I suspect “PANS” is a term that encompasses what we’ll someday discover are multiple related diseases—and that AE will turn out to be far more common than anyone thought. 

But one thing is for sure: just because something doesn’t look like the most widely accepted, present-day definition of AE doesn’t mean it’s psychological! 

In fact, PANDAS Physician’s Network says that other kinds of AE must be ruled out to diagnose PANS/PANDAS, so normal AE tests can never exclude it.

This World Encephalitis Day, I hope that both people with accepted forms of AE and people with PANS/PANDAS will get the help they need.  I want everyone to know how devastating AE and PANS can both be—and to realize that some cases of psychiatric illness have a treatable, immune-related cause, whether it’s PANS or AE or something else.

If you or someone you know has a mental health diagnosis and worsened symptoms whenever they have an infection, or if they developed mental illness out of nowhere, it just might be PANS or some other kind of encephalitis.  Please read more about these conditions here:

Science is only in its infancy in understanding how the immune system can affect the brain and cause psychiatric symptoms in PANS, AE, and other medical illnesses.  We need more research on encephalitis of all kinds, and for the AE and PANS communities to come together to work towards finding a cure for all.


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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”

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””