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

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.

ERP & Imaginal Exposures

I’ve written elsewhere on this blog about Exposure and Response Prevention therapy (ERP) and how different my life is after I underwent an intense 12 weeks of this type of cognitive-behavioral therapy.  ERP is exactly what the name says it is: you are exposed to something that will trigger your obsessions and then you are prevented from responding with a compulsion that will relieve your anxiety.

For example, someone who has contamination obsessions and hand-washing compulsions might be made to touch garbage and then is not allowed to wash her hands.  Instead, she sits with that anxiety, feeling it intensely.  If someone has HOCD obsessions and seeking reassurance compulsions, she might have to look through a Victoria’s Secret catalog and is not allowed to ask, “Am I gay?  Am I straight?”

So, what happens when you have Pure-O obsessions?  What if your obsession is that you will kill your newborn daughter and your compulsion is to stay away from her crib?  What if your obsession is that you’re going to blaspheme God and go to hell and your compulsion is repeating a prayer in your head?

Then what?  You can’t really kill your daughter (um, big DUH there, but you get it!) and you can’t really go to hell, so how in the world are you able to practice an exposure then?

"little sad song" by *TrixyPixie on deviantART

“little sad song” by *TrixyPixie on deviantART

Imaginal exposures, baby.  Brilliant and brutal.

In situations like these, what you might be expected to do is to write down all the ways you could kill your daughter, read it into a digital recorder, and then listen to it over and over.  Or maybe you’ll create a story in which you go to hell, where you’re forever condemned, and you read that story again and again.

If you’re an obsessive-compulsive, trust me, these imaginal exposures are going to FREAK. YOU. OUT.  They will be so triggering and so terrifying that your anxiety is going to spike, no problem.

Meanwhile, no compulsions allowed.

Meanwhile, ERP is re-wiring your brain.

Meanwhile, you’re stepping toward freedom.  And “all” you had to do was listen to a story.

This was my particular brand of ERP actually.  I had to listen to my recording for about 80 minutes a day until my anxiety levels (self-measured at the beginning, middle, and end) decreased by 50%.  For the first ten weeks or so, my anxiety levels were NOT dropping, and I very nearly gave up.  I mean, why put myself through this misery and terror every day if it was doing no good?

But then.

Sometime during week eleven, those anxiety levels started to drop.  I developed a whole new way of looking at my intrusive thoughts.  I tiptoed up to OCD.  I can still remember the day when I was listening (again) to that horrid recording, and instead of feeling anxious, my thought was, “This is getting so annoying.

And then I laughed … because … because finally.  You know what I mean.

OCD Stockholm Syndrome

First things first, I am a guest blogger on Monday at my friend Hannah’s blog, Prayers of Light.  Over there you can read a little something I wrote about Digory Kirke, about finally getting to hear the rest of the story.  Fellow Narnia geeks like me and Hannah are more than welcome to check it out!

Let’s talk about OCD Stockholm Syndrome, yes?

OCD.  Obsessive-compulsive disorder.

Stockholm Syndrome.  When hostages love their captors/abusers.

OCD Stockholm Syndrome.  When obsessive-compulsives ironically cling to the disorder that holds them in bondage.

“OCD Stockholm Syndrome” isn’t a real term, but it’s a real thing– and one I don’t think we talk about that often.  It’s confusing and senseless, and I don’t claim to understand it myself.  But this blog is in the business of shining light in dark places (mmm, lights all around!), so I thought I’d write about it.

I hate OCD.  I really do.  I think it is an ugly, vile, reprehensible disorder that steals joy and leaves people in shackles.  So, tell me why it is that, after my cognitive-behavioral therapy was over, I asked my therapist, “Do I still have OCD?” and when he said, “Yes,” I felt relief.

I think I was worried about what I would lose.  OCD had woven its way through me and entangled itself so deeply through me that a big part of me was worried that I would lose my personality if I lost OCD.  I also thought I’d lose my reputation as the “thinker” amongst my circle of influence.  As a Christian, I worried that I would lose my desperation for Christ if this disorder vanished because, after all, hadn’t it motivated me toward loving my God?

Once I watched a talk show where an audience member asked a question to the girl on the stage suffering from anorexia.  The audience member had formerly been through treatment for anorexia herself, and she asked (with incredible insight), “Sometimes don’t you feel like anorexia is your best friend?” and the girl on the stage answered, “Yes.”

At the time that I watched this talk show, I had not yet undergone ERP, and I remember thinking, I understand that.

It’s bizarre, I know.

When I communicate with other obsessive-compulsives, there is often a theme of therapy-avoidance that runs deeper than just a distaste for the hard work and anxiety that characterizes Exposure and Response Prevention therapy.  There is this deep-seated worry that ERP will not only erase OCD and anxiety from their lives– but a part of themselves.

I didn’t like to talk about this with people because it seemed so contrary to everything I stood for.  How could I hate OCD with everything inside of me– and yet still cling to it with such a quiet desperation?  It made no sense, and even to this day, I still have not figured it out.

freedom

But I wanted to talk about it on my blog because it’s a real thing– a real thing that sometimes prevents sufferers from the relief that is available to them.  I don’t know a lot about this strange phenomenon, but I do know this: I was worried about losing my personality, reputation, and desperation for Christ, but now that my OCD is under control, I am finally the Jackie I was supposed to be; I am still a deep thinker but now my thoughts are productive and not circular, and I actually have a greater capacity for deep thought because I am not sent reeling in terror by my thoughts; and I finally feel the nearness of God.  Whatever was lost doesn’t compare to what I gained.

Life is Risky Business

riskyquoteThe sooner we acknowledge this, the closer we are to freedom.

If you’re an obsessive-compulsive who fears uncertainty,
please explore my website to learn about
cognitive-behavioral therapy, your next step.

 

Preparing for ERP Therapy

Lately, I’ve been talking to some brave, amazing people who are planning to tackle cognitive-behavioral therapy (CBT), specifically exposure and response prevention therapy (ERP).  I know it’s the right next step, they tell me.  Any advice?

Glad you asked.  Here are my suggestions as you prepare for ERP.

1. Read and research!  Don’t go into this (incredible but difficult) therapy with your eyes closed.  I believe that the more you know about what ERP entails and what will be expected of you, the better.  In fact, I have a friend who had done enough research on it that he realized only one or two sessions in that he knew more about ERP than the therapist did– instead of wasting time, my friend was able to stop meeting with that therapist and find an expert in ERP.

2. Have an open heart.  ERP is not the same as talk therapy.  You will be given homework and made to go through exposures that are intended to spike your anxiety.  Before I started ERP, my psychiatrist gave me this advice: “Think of a mother, Jackie.  A mother would do anything to help her child.  You must be willing to do anything to help yourself.”  By its very nature, you will be expected to do things that you do not want to do (AT ALL).  Do them anyway.

3. Surround yourself with the RIGHT support system.  What you need are cheerleaders, people who will be your biggest fans and encouragers.  What you absolutely do NOT need are enablers– because they will only be hindering the ERP process.  Educate your closest friends about what ERP entails and ask them upfront to not baby you or enable your OCD.  When they offer you reassurance or do anything to enable your obsessions and compulsions, they are siding with your disorder against you, instead of with you against your disorder.  This is going to be hard for both sides.  Tough love is not fun … but it is good.

4. If you’re the kind of person who prays, pray hard.

For those of you who have experienced ERP, what advice would you add?

comfort2

When Thinking Hurts

wanttostopthinkig

I remember days when my brain worked like a manic assembly line, working, working, always working– and not in a good way.  Those days, I’d carve out time reserved for obsessions, for list-making, for mental reassurances.  Car rides were killer– especially those long stretches on boring I-90– and could throw me into panic mode.  At night, I’d lie awake in bed, drowning in circular thought.

And that was the thing: my mind was racing, but it never got anywhere.  Ten minutes or an hour or a week later, I’d still be chewing on the same things, exerting so much effort for no gain.

I was programmed.  When there was a moment, a pause, a hesitation, my head would fly to a dark place.  And then it would battle its way back out.  Over and over and over (and over and over and over and over and over …).  So useless, so fruitless, and so much energy spent, so much time wasted.

The by-products of OCD are not worth the efforts.

These days, my mind is still working hard– but in a good, healthy, productive way.  I listen to audiobooks while I get ready in the morning, in my car, while I exercise, as I fall asleep.  I let the wonder of literature engage my mind and thoughts, and it feels healthy, like solving a difficult puzzle or marveling at philosophy.  I write every day– blogging, poetry, my novel– and it’s like climbing a mountain.  My brain is a muscle, flexing and growing stronger.  My conversations with friends are deep and meaningful and far more important than just seeking out temporary comfort.  

When thinking hurts in a bad way, you need to re-wire your brain.

In the Moment

It’s one thing for me to declare over my blog to a primarily anonymous audience, “Dear obsessive-compulsives, this is what you should do.”

But then comes the moment when your friend says, “Hey, can you talk to my friend on Facebook?  Here’s her name.”

It’s not that I’ve never been there before, the frenetic chaos of an obsession.  I know what it’s like to feel that furious terror, to need to know that things will be okay.  I get it.  I really do.

But I know the other side now.  I know that reassurances aren’t going to get this girl anywhere.  Know that discussing her obsession is like clipping off the leaves of a weed, when what we really need to go for is the root.

In that moment– those wild minutes of obsessive pandemonium– it’s hard to talk calmly, to keep redirecting someone back to the idea of treatment, to feel like you’re doing them any good.  In fact, you imagine they’re thinking, No, you’re not getting this.  You don’t know what I need.

But I do.  Because I do get it.  Because I was there.  Because I tried for years to put a quick bandaid over the cancer that needed to be cut out.

Breathe, I tell her.  Breathe tonight, and then educate yourself tomorrow.  It’s time to go for the root.

anxiety2