Healed Not Cured: OCD Remission & Relapses

I got an email this past weekend from a lovely blog reader who has found victory over obsessive-compulsive disorder through exposure therapy. It’s such a joy any time someone shares a story of freedom, and it does my heart so much good. It reminds me of the reason I preach the benefits of ERP therapy. It reminds me of when I first went into OCD remission back in 2008.

But I also find it important to mention that while the person with OCD has experienced healing, it does not mean that they are cured. In the vast majority of cases, OCD is never cured; it is treated and maintained. What does this mean?

First of all, it’s definitely something to celebrate. I revel in my remission, and in fact, after eight years of this freedom, sometimes I even find myself taking it for granted. It’s a victory to come out of exposure therapy with a new tolerance for uncertainty. It’s a joy and a relief and, for me, at least, a whole new life.

But it doesn’t mean that I don’t have OCD. 

not you again

There are days of intense stress where I buckle a bit and find myself having some obsessive thought patterns or even resorting to old compulsions. This disorder is mostly dormant in me … but it is still in me. And it can wake when I am stressed or fearful. Every once in a while, there is something that will trigger my OCD, and it’s like there’s a CLICK in the way my brain works, a little BLIP in the new system.

But, usually

  1. I recognize it for what it is. I am able to do this because of ERP.
  2. I do not beat myself up over it or assume “all is lost.” It’s merely a step back. I don’t have to start the race over.
  3. I refuse compulsions. (Notably, I allow myself to ask a group of people [usually my coworkers] ONE TIME for what they would deem the appropriate response, and then I DO IT, whatever they say. I know that when my OCD is triggered, I have a hard time understand what is or isn’t a valid response. So I give the decision to others.)
  4. If it’s particularly bad, I listen to my ERP audio track.
  5. I go to sleep, as early as I need to. It is–almost without fail–better in the morning.

I don’t mean this to be bad news–not at all; rather, it’s just something to take note of, something to have in the back of your mind for those stressful days, for those moments when your OCD wakes up and starts to whisper in your ear.

Here’s some anecdotal data about my remission and relapses:

  • In the first 1.5 years after completing ERP, I didn’t experience obsessions or practice compulsions at all.
  • In the years after that, I have had about 1-2 relapse incidents a year.
  • Each incident has lasted on average just a couple of hours. One lasted about two days.

This is nothing compared to my life before ERP. This is manageable. This is freedom. This is remission.

This is good news, people.

If you want to learn more about the exposure therapy that got me to this point, you might want to check out the following links:

jackieleasommers.com/OCD: a collection of my posts about all things OCD
jackieleasommers.com/OCD-help: a letter from me to OCD sufferers, along with a list of next steps
jackieleasommers.com/twin-cities-OCD: resources for OCD sufferers living in or around Minneapolis and St. Paul

Thoughts on Freedom of Various Kinds

I moved yesterday. All went quite well.

I first moved into my old apartment in 2008, right as I started to write Lights All Around, my first novel. Those walls have seen so much, including complete and utter breakdowns, my experience with ERP therapy, the writing of Truest, and the writing of first drafts of two other novels. (Whoa– I wrote four novels in seven years? Sheesh. Had not thought of it like that before.)

The new house is still undergoing renovations, and it’s all a big old mess, but it’s my mess that I own, and I love it. I can see its potential so clearly, and I’m so happy.

Moving means packing and unpacking, and that means finding a million lost things in the dark corners. I’ve found so many things– journals, stories, etc.– that show so clearly the pain of and enslavement to my OCD. Today I read a journal entry dated 2006 that said something to the effect of, “I am still the pot who asks the Potter, ‘Why did you make me this way?’ I wonder if I will ever know. I wonder if I will ever experience freedom.”

I want to tell that girl, Two more years. Hold on.

Of course, that’s my past. I know so much more now, nine years after that journal entry was written. I have joy and freedom and a book deal with HarperCollins. I did the hard work of ERP therapy and reaped all the benefits of it– a whole different life. So, I don’t need to say that to my past self; instead, I will say it to you, you who are enslaved to your own obsessive-compulsive thoughts, who are lost and in slavery to OCD, who wonder if there is a point to it all or if you will ever see the light again:

Hold on. There is freedom available. Hope. Joy. Light. You can learn about ERP therapy here. I pray it will be the key that unlocks your prison, just as it unlocked mine in 2008. Today I find purpose in my past of OCD; I find happiness in daily life; I find freedom– or freedom has found me. Thank you, God.

How fitting to be reminded of my freedom on Memorial Day weekend. I am grateful, so grateful, for every freedom. I remember.

Sweet Freedom

freedom in redAlison Dotson, president of OCD Twin Cities, and I were emailing recently about how sometimes we feel as if we say the same thing post after post, article after article, especially since they usually involve our own stories with OCD, and history doesn’t change.

But I reminded her that even if we’ve heard our stories over and over, someone else might be hearing it for the first time. Not to mention that sometimes those of us with OCD need to hear the truth multiple times before it is finally able to sink into our heads and hearts.

So here it is again:

I was in bondage to obsessive-compulsive disorder for twenty hellish years. I was plagued by ugly, intrusive thoughts that caused me intense anxiety and even terror. Many days I felt completely out of control of my own thoughts, and I hated the ugliness that polluted my mind. I was sad, lonely, depressed, lost, engaged in an ongoing war where the battlefield was my own brain.

And then an amazing psychiatrist named Dr. Suck Won Kim gave me not only a prescription but also the phone number to a cognitive-behavioral therapist in the area, along with the warning that ERP therapy “will be hell” and the encouragement that I had to do it anyway.

And I did. For twelve grueling weeks, I practiced the exposure therapy assignments set out by Dr. Christopher Donahue, and after twelve weeks of hell … I was free. Free for the first time since I was seven years old. I could barely even remember what freedom felt like, what it felt like to be master of my own thoughts, to rule over my OCD instead of having it rule me, and so it was actually a little scary at first.

But let me tell you: you get used to freedom, joy, and light pretty darn fast.

The last five years have been magnificent.

Please, please ask me questions if you have them.

For (lots!) more about OCD and ERP, go to jackieleasommers.com/OCD

Image credit: Jesus Solana

The Dreadful O of OCD

My friend Janet over at OCDtalk recently blogged about how, so often, all people know of obsessive-compulsive disorder are the visible compulsions, as opposed to the invisible obsessions.  And back in November, The Atlantic also posted about the debilitating nature of obsessions.

As I’ve said before, “If it doesn’t hurt, it’s not OCD.”

OCD begins with obsessions.  Compulsions are actually just a monstrous side effect of OCD.

Source: deviantART "Torture" by eWKn

Source: deviantART
“Torture” by eWKn

Compulsive hand-washing is hard to hide.  Hoarding, definitely.  Even repetitive reassurance-seeking and confession (compulsions of choice for a Pure-O) are easy to notice once someone points it out to you.

But it’s harder to see the obsessions that are driving them.

Imagine the deep horror of constantly imagining you’ll hurt someone you love.  Or the intense mind-screw of questioning a part of your identity that you’ve always gripped tightly.  Or feeling as guilty as a rapist, a pedophile, or a murderer … when you haven’t even left your room.  You know that wrong feeling that you sometimes get to which you can never find the words to describe it except for that it’s just wrong?  How’d you like to feel that every waking moment?  Obsessions come hand-in-hand with such intense anxiety, horror, and guilt that obsessive-compulsives feel they cannot bear them.  Hence, so many compulsions.  And, devastatingly, suicides.

That, my friends, is why I get upset when people say things like, “I’m a little OCD; my handwriting has to be perfect” or “If my socks don’t match, it bugs me so bad.  I think I’ve got a touch of OCD.”  It feels like someone is comparing their hangnail to your amputation.  Does that make sense?

So many people in the OCD community have not yet found their voice, and that prompts me to be even louder.  I know no one likes the person who is so easily offended.  Heck, those people generally annoy me too!  But I’m reacting on behalf of a broken, abused, tortured community who– this is heartbreaking– believes themselves worthy of only brokenness, abuse, and torture.

So I choose to be loud about it.

Thanks for understanding– or trying to.

OCD, ERP, and Christianity

ocd and christianityI often hear from obsessive-compulsive Christians asking, “If my OCD is centered around my faith, will ERP still work even if my therapist is not a Christian?”

I’ve written elsewhere about how OCD is an arsonist, setting fires (obsessions) in our minds and how our compulsions are like shortsidedly trying to put out the fires instead of going for the arsonist directly.  You don’t need a Christian cognitive-behavioral therapist.  You just need someone who knows ERP and knows it well.  In other words, you need an OCD assassin.

If you are obsessing about the unforgivable sin or something else faith-related, you don’t need a great theologian to dialogue with you about it.  (In fact, chances are that you’ve already discussed this with all your Christian friends and maybe even a respected pastor.)  After that conversation with the theologian, you’re probably just going to start obsessing again, either about the same thing or something else.  You need someone who can take out the OCD, and yes, I mean “take out” in a sniper kind of way.

“But I’m worried that ERP is just going to cover up my real issues.  I don’t want to just forget about these things.  I want to solve them.”

First of all, you’re misunderstanding ERP.  It doesn’t sweep issues under a rug.  It’s not like you’re brainwashed into believing that life is now perfect.  Not at all!  It rewires your brain so that you can think the way “normal” people do– less circularly.

Secondly, you’re misunderstanding life and faith.  These things aren’t “solvable”– at least, not generally.  Sure, you might be the one person in a million who has God audibly speak to you one day– but probably not.  Life is full of uncertainty.  It’s a FACT.  And faith is about TRUSTING God even in uncertainty.

You need to get it out of your head that you will ever be rid of uncertainty in this life.

Back to the original question …

Your ERP therapist is not going to talk you through theological issues.  That’s not his/her job, and actually, it would be counterproductive to what ERP is all about.

If you can find an incredible cognitive-behavioral therapist who is also a follower of Christ, then yes, by all means, go to that person!  But if healing and health are your goals, then your first order of business is finding someone who knows how to do Exposure and Response Prevention.  You are looking for an OCD assassin, not someone to have tea and Bible study with.

Thoughts?  Further questions?

 

A Metaphor for Obsessive-Compulsives

A new friend came over to my apartment the other week, and we got to talking about Exposure and Response Prevention (ERP) therapy, and I shared a metaphor with her that I’d like to share with you now.

We put out fires, but what we need to do is shoot the arsonist.

arson

The problem with attempting to “solve” an OC’s obsession is that, as soon as it’s solved, a new obsession will take its place.  In that way, you’re only putting out fires, not dealing with the root issue, which is an inability to handle uncertainty.  For years and years, I watched my obsessions hop from one thing to the next.  My compulsions– and even my talk therapy sometimes– were shortsightedly stamping out the flames in one corner of my mind while OCD set a new fire in another corner.

How can you possibly manage to keep up that way?  It’s not sustainable.

That’s why I agree with so many of the OCD experts in this country that the best way to fight OCD is with Exposure and Response Prevention therapy.  ERP is so very different from most standard therapies.  In it, obsessive-compulsives are exposed to a trigger that prompts in them deep anxiety; then they are not allowed to respond with an anxiety-easing compulsion.  Instead, they are forced to sit in that discomfort.  Doing this repeatedly actually re-wires the obsessive-compulsive’s brain in a way that they learn to live with uncertainty and their quality of life improves dramatically.

It’s been four years since I turned my attention from the bonfires to the disorder that was setting them.

It’s been a good four years.

my darkest, lowest days

Tonight, I have been thinking about that deep, dark pit and the moments of my life when I was at the very bottom, nowhere lower to go and my head too heavy to look up.  I have been thinking about the things and places that remind me of those times.

You might guess that it was those months after college graduation, when I would wander from the laundry room to look over the balcony to the pool area two floors below and think about what would happen if I let myself fall.

Or maybe that it would be one of those evenings when I was wild-eyed and manic, scream-weeping in the bathroom while my roommate sat outside the door and prayed.

But when I think of myself at my lowest, I always picture myself in the Caribou Coffee in Long Lake, Minnesota.  I’d arrived to town too early to visit Orono High School, and so I stopped into Caribou off of Highway 12 (which has since been re-routed), ordered hot cocoa, and sat alone at a table.  In my car I had been listening to “Spirit” by the band Switchfoot, letting the chorus hammer into me that all I wanted was Jesus … exactly whom I believed I could not have.

Interestingly, the emotion that I seemed to feel the most was this odd, lonely marvel.  Don’t get me wrong– it was not good, as marvel usually is.  It was this dark, lost, inconceivable wonder that I could be so damned and that there was nothing I could do about it.  I sipped at my cocoa, thinking how there was no joy left available to me, no rescue coming, no prayer I could whisper to make things okay again.  A marvel and a sort of understanding washing over me that this was my reality and there was no way out.

sadcoffee2

For years, I could not listen to that song (which truly is a lovely one!) without feeling a stale depression steal over me.  To this day, when I drive by that Caribou, I think to that dark day.  Nothing impressive or strange or particularly triggering had occurred, but it is my lowest, loneliest moment of my life.

I could not have pulled myself out of that pit.  I didn’t even have the strength to lift my eyes.

(Oh gosh, I’m going to start being known as That Girl Who Cries in Barnes & Noble, LOL!)

Jesus Christ rescued me.  He led me to the right medication and the right therapy and carried me out of the pit himself.

In the past couple of weeks, I have gotten several emails from fellow obsessive-compulsives who are in that same pit.  I write this post to say that there is hope– and it’s not in ourselves.

 

 

OCD torture

Through my website, I can see what search terms are bringing people to my blog, and this week, the number one search term was “OCD torture.”  It breaks my heart.  But I can completely understand and relate.

For those who are in the throes of such torture:

Welcome to my blog.  I know what you’re going through– I was there myself, only about 5 years ago.  And the torture was long-lasting for me– nearly 15 years of it.  It’s crazy how we can even bear up, isn’t it?  Sometimes I am amazed that I survived, was able to get through school, was able to keep my job.  Every single day, I hurt so bad.  Every single day, I had this feeling that something was wrong, something was off.  I felt frantic.  The weight of the world was on my shoulders, even from when I was young.  Personally, my OCD attacked my Christian faith and made me doubt my salvation, and that doubt is like pure agony to one who loves Christ.  So many evenings I spent weeping, almost keening, because I couldn’t handle the thoughts and doubts that were inhabiting my brain, burrowing into it as if they’d stay forever.

torture

My OCD attacked whatever was most important to me.  It made me think people were secretly against me, it made me think I shouldn’t tell my problems to my best friend, it made me think it was sinful to write (one of my life’s greatest loves), it made me think I was gay when I clearly was not, it made me think I was a sex offender, it made me think it was wrong to meet new people or to talk to anyone I didn’t know (not helpful when your job is recruiting!).  It made me feel guilty if I brought home a STAPLE from work.  It made me feel guilty and sinful all the time.  And TERRIFIED too.  It wasn’t always just a dull agony.  Quite often it ramped into a shrill, turbulent nightmare.  Overwhelming, engulfing terror would swallow me whole.  And then sometimes, to hide itself, it would make me even doubt that I had OCD (tricky bastard!!).

Notice I say it made me feel this way.  OCD, my disorder, made me feel this way.  The guilt and terror were not from God.  The thoughts and doubts weren’t my own.  They were given to me, like the ugliest of gifts, from my disorder.

I remember reading blog post about the unpardonable sin, thinking that is me.  I am in those shoes, and I will never be out of them. Guess what?  I have been delivered from that ugly hold OCD had on me.  I still have it.  But I’m the boss; it’s not.

How?  Cognitive-behavioral therapy, specifically exposure and response prevention therapy, which I’ve explained on my blog here.  Now, after twelve weeks of CBT, I have been in control of my OCD for the last four years.  It’s like another life.  When I feel guilty now, it’s because I’ve done something wrong.  When I doubt something, I don’t freak out– I seek out advice from family, friends, and the Holy Spirit.  I know my soul belongs to God.  I can look at OCD’s silly suggestions and see that they are ridiculous.  I don’t have to entertain them.  I can toss them aside like I never could before.

And my OCD knows it’s not in control anymore.  To be honest, it doesn’t even fight me as much now that it knows it loses every single time.  It knows I have the tools to toss it out the window, so it keeps pretty quiet around me.

Meanwhile, it is torturing you.  I hate that.  I want you to be free like I am.  It is going to be a rough road, but there is help.  Find a cognitive-behavioral therapist, buckle in, and do whatever you have to do to complete your therapy.  And when you want to quit, you can post a comment on this blog, and I will be your cheerleader.  Skip the traditional talk therapy.  You need someone who knows how to do ERP.

Start today.  It’s time for freedom.

Note for those without health insurance: If you can’t afford to see a cognitive-behavioral therapist, and if you’re ready to take back your life, you can try a self-guided CBT experience with an iPhone app like the one at http://www.liveOCDfree.com or by using a book like “Stop Obsessing!” by Edna Foa or “Freedom from Obsessive-Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty” by Dr. Jonathan Grayson.

OCD and suicidal thoughts

Recently Janet at the OCDtalk blog posted about her friend whose obsessive-compulsive son had just committed suicide.  The post broke my heart.  It reminded me of earlier this fall in Boston where I met Denis Asselin, the winner of the International OCD Foundation Hero Award.  Denis’s son Nathaniel, who suffered from intense body dysmorphic disorder (on the OCD spectrum), took his own life in 2011.  It was beautiful but devastating to listen to him talk about his beloved son.  My heart is heavy as I think about these families, now missing an important member, and about the horrific pain that these young men were experiencing that made them see no other way out.

It’s a dark, heavy topic, but tragically important to discuss.

OCD is so often thought of as simply being neat or orderly– or sometimes even anal retentive about certain things.  Media portrays obsessive-compulsive disorder as a quirky, nitpicky, and sometimes comical disorder, but let me level with you: OCD is debilitating, devastating, and torturous.

Can you imagine feeling nothing but sheer, unadulterated terror for days, sometimes weeks, on end?

I remember some of my darkest, hardest, most terrifying days.  I lived in the Brighton Village Apartments with Becky and Tricia.  During the day, I was given the small grace of suspending my obsessions– at least enough to make it through work (most days– not all), for which I am grateful.  In the evenings, I would return to our apartment, where I would drown in an ocean of terror.  My soul felt untethered, lost, condemned; I felt the hot, ugly breath of hell on my neck all evening.  I felt unforgiven and completely cut off from the God I wanted so desperately.  (It is making me cry right now as I write about those dark days.)  And the torture of not knowing— heaven or hell?  saved or condemned?  found or eternally lost?  heard or ignored?– was the worst kind of mental anguish.

Those apartment buildings were built like an X, with the pool and laundry facilities at the center where all four wings came together.  I remember– and this is not an isolated event but something that happened every time I was in that third-floor laundry room– I would look over the balcony down to the first-floor pool area, usually empty, and I would thinkIf I threw myself off this ledge head-first, I would finally know: heaven or hell.  I would have my answer, instead of the torture of not knowing.

But what if the answer was hell?  I couldn’t hurry that on.  What I wanted even more was annihilation— to cease to exist.  I craved oblivion.  That is true pain for you.

I realized that I was already in hell– just of a different stripe.  I was living like a condemned person, in TERROR and heartache and loneliness, and in constant combat with the blasphemous thoughts that plagued my mind.

Most people wouldn’t have guessed it.  I smiled a lot at work.  I even managed to fool those closest to me who knew the anguish I was experiencing.  But I would look over that balcony at the hard floor, and I would think about it.  OCD is that devastating.  I believe obsessive-compulsives (even those who take their own lives) are some of the strongest people you will ever meet.  They fight a constant war.  It is no wonder to me that many want to lay down their weapons and surrender.

And yet, here I am, eight years later, happy and healthy and secure in my faith, enjoying life and friendships and a growing relationship with Jesus Christ.  I am not tormented by my own thoughts, and uncertainty isn’t anguish any longer.  I want to gently take the faces of the anguished obsessive-compulsives into my hands, stare them directly in the eye, and tell them, There is hope.  There is help.  It doesn’t have to stay this way.  I would hug them and cry with them and personally drive them to my cognitive-behavioral therapist.  I was once where you are.  Follow me to freedom.

If you are struggling today with intrusive thoughts, obsessions that plague you, compulsions that take over your life, THERE IS HOPE.  I promise you.  This is a disorder– just a disorder, albeit a powerful, ugly, life-thieving one.  Follow me to freedom.  There is Truth, and it is not what you are hearing from your OCD.  Rescue is possible.  Follow me to freedom.  Email me.  Joy, happiness, laughter, truth, peace, safety– these may seem like impossibilities, but they can be yours too.

suicide