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

The [Beautiful] Paradox of ERP

paradox of ERP2Exposure and response prevention therapy. ERP.

The hardest thing I have ever chosen to do in my life.

And one of the best.

But that’s not actually the paradox I’m talking about. The paradox of ERP that fascinates me most centers around uncertainty.

The whole point of ERP therapy is to teach someone to learn to live with, accept, even embrace uncertainty. ERP actually re-wires the brain to help the OCD sufferer with this. Before I went through ERP, I wanted to know everything with 100% certainty. Anything less would cause intense havoc in my mind, heart, and body. Because of this intense desire to know everything with certainty, I so often felt gobsmacked by uncertainty. I lived as if, without total certainty, I could barely know anything. Doubt pummeled me like a linebacker. My life was ravaged by uncertainty.

But once I went through ERP therapy and learned to accept uncertainty, the bizarre thing is that my confidence returned. I suddenly felt surety and certainty again– after I realized I didn’t need it.

When I demanded 100% certainty, what I ended up with was often something in the 25-40% range. Or lower.

When I abandoned the need for 100% certainty, I ended up in the 90-99% range. Sometimes less, but usually way, way up there.

That’s weird math. Backward logic. A paradox.

One I love.

99% sure,
Post-ERP Jackie

P.S. If the need to know for sure is ruining your life, you need ERP. Read more about it at jackieleasommers.com/OCD.

P.P.S. I’m a follower of Jesus Christ, and I can’t help but be struck by the similarity of this to “Lose your life to gain it.”

Image credit: Nicu Buculei, modified by me

OCD Scrupulosity: Is ERP Sinful?

is ERP sinfulSometimes people with religious scrupulosity fear that ERP therapy itself is sinful. It’s true that ERP therapy will definitely ask you to do things outside of your comfort zone, things that will probably make you sick. (This is how ERP works, and it is crafted specifically around your own deepest anxieties.)

But once embarked on this ERP journey, I think it’s unwise and counterproductive to try to convince yourself (or convince others … or let others convince you …) that your therapy is not sinful. (After all, the whole point of this therapy is to embrace the uncertainty!)

If you are a Christian and concerned about ERP therapy, I suggest you say a prayer like this then dive in headfirst:

Lord, I am terrified about what I am being asked to do through this therapy, and I worry that it might be sinful.  But there is at least some part of me that believes this is connected to OCD, so please cover over all I have to do with your grace. I am doing these things in the hopes of restoring my right and healthy relationship with you. Please be honored by my therapy and my choice to fight for my freedom (which you won on the cross) and my relationship with you (again, made possible by the cross). Be glorified in my therapy, and cover anything sinful with your incredible grace. Make me strong enough to complete my exposures. Provide the strength I need to press through this scary therapy, and let these hard exposures and choices (that may sometimes seem wrong to me) glorify you. Amen.

There were definitely times when I (and others– wow, that was hard!) wondered if I was doing something wrong with my ERP exposures, but in my heart of hearts, I knew that this was my last and best chance at freedom and health and hope. I held onto that and pressed through, and I will tell you this: every. single. thing. in my life is better post-ERP, in particular, my spiritual life is now thriving and healthy. I am growing in my faith. I have the joy of salvation. I trust Christ more.
And I believe that ERP was God’s tool to bring me into this way of life.
To learn more about OCD, ERP therapy, religious scrupulosity, go to jackieleasommers.com/OCD.
Image credit: Fernando Rodriguez

A Detailed Post about ERP

ERPI have written many times about Exposure and Response Prevention therapy, and lately, many people have been contacting me for more details about it, especially how they can do ERP on their own from home.

GIANT DISCLAIMER:
I AM NOT A THERAPIST.  NOT EVEN CLOSE.  

I am an obsessive-compulsive 31-year-old female who successfully underwent a twelve-week ERP experience four and a half years ago.  I say “successfully” because at the end of the twelve weeks, I then spent the next year and a half without obsessions or compulsions.  (Can you even imagine?  It sounds like a different life, right?  It was.)  In the three years after that, I have only had a handful of obsessive bouts (probably fewer than five), which I have been able to manage well with my ERP tools and which didn’t last longer than one day.  You can gauge for yourself if that sounds like success to you.  For me, it has been like happy freedom after spending twenty years in slavery to OCD.

With all of that said, I’m going to give my very best advice in this post.

SKIP TALK THERAPY AND PURSUE EXPOSURE AND RESPONSE PREVENTION THERAPY.  Talk therapy (where you spend an hour with a therapist discussing your problems) can actually, in some cases, perpetuate your OCD, especially if your compulsions include confession and seeking reassurance.  Your talk therapy sessions will essentially become one-hour opportunities for you to confess to your therapist and seek reassurance from him or her.  That is the opposite of what you want to do.

FIND A COGNITIVE-BEHAVIORAL THERAPIST WHO IS SKILLED IN ERP.
Begin by asking him or her questions about the techniques they use to treat OCD.  If the therapist doesn’t mention cognitive-behavioral therapy or exposure and response prevention therapy, keep looking.  You don’t want to waste your time spinning your wheels with someone who doesn’t know how to do exposure therapy.

WHAT WILL USUALLY HAPPEN IN ERP:
Your therapist will begin by asking lots of questions to get a real understanding of your OCD.  Remember, there are several different kinds of OCD, and in order for your therapist to really mold your treatment plan around you as an individual, he is going to need to ask for lots of details.  If it seems like he is zoned in on what will cause you the most anxiety, you’re probably right.  In ERP, your therapist is looking to trigger your anxiety and then prevent you from doing anything to alleviate that anxiety.  (Good times!)

You will probably create a fear hierarchy, a list of various things that would cause you intense anxiety.  Then you’ll probably start with the least scary item and work your way up to the top.  The top item on your fear hierarchy will probably seem IMPOSSIBLE.  Continue anyway.  By the time you actually get to that item, ERP may have already re-wired your brain enough to be able to handle it.  I need to repeat: focus on the item you’re at, even though the temptation is to stress about the next, scarier item.  Your therapist is not going to force you to do anything, and it’s going to be a better experience for you if you simply focus on each individual day and what you have to do that day.

Your exposures will be specific to you, though, in general, if you have contamination fears, you will probably have to interact with things that you deem unclean (in fact, probably with things that really are!).  If your OCD is more concerned with order, you may be asked to sit with things out of place.  If you have HOCD, you may be asked to read LGBT literature or to look at scantily-clad members of your same gender.  If you have harm thoughts or other anxieties that you’re not able to actually expose yourself to, you’ll likely need to do imaginal exposures, which may involve writing graphic stories and then reading them or possibly recording the story and listening to it on repeat.

If you’re doing this on your own (and are not guided by a therapist), I recommend doing the recording.  It was more anxiety-inducing for me to listen to a recording than it was for me to quickly read over the story I had written.  Make the story bad– the worst things you can imagine.  And perhaps opt to use lots of details: instead of just using large, blanket statements like “I am thinking a blasphemous thought, and I will go to hell for it,” try “I think of cursing God, and I know I will go to hell, where I will be lost and alone forever.”  Describe it.

The first time you do your exposure, keep track of your anxiety level, 0-100, where 0 is no anxiety at all and 100 meant you were clawing at the ceiling.  Then, every time you do your exposure, rate your anxiety level at the beginning, middle, and end of it.  Keep doing that exposure until your anxiety level is half of what it was when you first started.  Then, you can probably move on to a higher, scarier exposure on your fear hierarchy.

If your exposure (when you start it) is not causing you much anxiety, then chances are you have something a little off.  You’ll need to talk to your therapist or think through your exposure to see if you’re hitting the nail exactly on its head.  (I read a story once where the OC thought her obsession was one thing, say, worrying that she would hurt her child, but the exposures weren’t causing intense anxiety, so she and her therapist took a closer look at it, and together they realized that her actual, larger fear was that she would never know if she would hurt her child … similar but a little different, enough that they changed her exposure to fit better.)  If you have been doing your exposure for a while and the anxiety levels are dropping, then that is a good thing, my friend.  That means that ERP is re-wiring your brain correctly.

Keep all your anxiety ratings in one place so that you have a visual representation of how ERP is working as you watch the anxiety levels drop.  It may be a while before you start seeing a downward movement.  That’s okay.  Keep going.  In my experience, my anxiety levels didn’t start to drop until about week ten.  After that, they plummeted quickly.

ERP is a scary experience, so I do recommend paying the money to see a therapist IF you can afford it and IF the person is well-trained in exposure therapy.  If you decide to create your own ERP experience, buy a book that will guide you, such as Stop Obsessing! by Edna Foa or Freedom from Obsessive-Compulsive Disorder by Jonathan Grayson.  Talk to your friends and family ahead of time and spell out for them what your compulsions are, asking them to not aid you in these, even when it is difficult.  It may be helpful for you to tell them that aiding your compulsions is akin to them being on Team OCD instead of Team You.

Many people choose to pair ERP with medication.  I did.

I spent fifteen years with OCD before I was diagnosed, then another five before I began ERP.  That was twenty years that OCD stole from me, so when I began ERP, I essentially knew it was my last hope, short of some supernatural miracle.  You might not be mentally in that place yet, ready to put your nose to the grindstone and make it happen.  You’ll know when you’re ready.  Just know this: most obsessive-compulsives I talk to who have gone through ERP say their big regret is not pursuing ERP sooner.  ERP is hard … but it is not (not-not-NOT) harder than living daily life with OCD.

And what is happening while you go through these exposures?  I meant it when I said that your brain is being re-wired.  In this therapy, the brain changes, allowing an obsessive-compulsive more room to live with uncertainty (the root of it all).

ERP gave me back my life.  I am happy again, have joy again, love life.  I no longer fight a daily battle with my own mind.

Related posts:
OCD, ERP, & Christianity
ERP & Imaginal Exposures
Preparing for ERP Therapy
Medication vs. Exposure Therapy
All About CBT