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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Getting Over the Trauma of OCD

I usually say I’m mostly free from my OCD. Indeed, I no longer have to cancel out every intrusive thought that enters my mind, and I don’t have to double-check everything I say or write for a blasphemous double-meaning. Without hesitation, I can read passages of Scripture that once sent me into a full-blown panic attack. I’ve truly come a long way, but lately, I’ve been realizing that my fight isn’t over.

What I’ve been through as a result of Scrupulosity OCD was extremely traumatic. Do you know what it was like, as a devout Christian, to believe that you would be forever separated from the God you loved with your whole heart? To me, this was the worst thing that could have happened, and as far as I knew, it had happened.

The pain was real, even though the reality was totally different. The truth is, I just had a disease that manifested itself as extreme OCD that happened to take the form of religious obsessions and compulsions. No matter the content, all OCD is essentially the same. It wasn’t a “spiritual” issue any more than it was when I caught mono last year (and subsequently descended into the worst flare of my life). Continue reading “Getting Over the Trauma of OCD”