My Journey to Hell and Back, A Personal Experience with CBT and ERP

Jackie Lea SommersI am pleased to introduce you to our newest guest blogger, Jackie Lea Sommers.  You may remember Jackie from OCD Awareness Week in 2012, when she won our creative expression award for her short story, Tipping Point.  In today’s blog, Jackie writes about her personal experience of conquering her demons through cognitive behavioral therapy. Jackie lives in Minneapolis and also blogs about OCD and creativity her own website at www.jackieleasommers.com. – CB

My Journey to Hell and Back, A Personal Experience with CBT and ERP

by Jackie Lea Sommers

You’d be shocked to hear just how similar my Minnesota hometown was to Mayberry, that sweet fictional town of Andy Griffith Show fame.  We didn’t lock our homes or cars, everyone knew everyone else, and the whole town showed up each Friday night for high school football.  My parents were and are the funniest, most generous people I know, and I grew up on a hobby farm just outside of town.  I should have been the happiest girl on planet earth.

But I wasn’t.  I had undiagnosed obsessive-compulsive disorder, and it stole joy from my would-be charming life like the worst kind of bandit—one without a name.

After 20 years of suffering, countless hours of talk therapy, loads of failed prescriptions (and their accompanying side effects), and one utterly exhausted psychiatrist, I was referred to an OCD specialist in the Twin Cities who broached the topic of cognitive-behavioral therapy (CBT) with me.

He didn’t mince words: “It will be hell,” he said.

But I knew I was ready for it: the daily hell of living with my OCD had become so much for me that I was willing to endure a short-term dose that had a glimmer of hope on the other side.

In the two years since I began the Lights All Around blog, the number one thing that I’m asked about by blog readers is my experience with cognitive-behavioral therapy.  Readers want to know what they can expect, so I’ve recorded my experience to give people a glimpse into the world of CBT.  It is my absolute pleasure to share about CBT, that alarming and magnificent tool that gave me freedom for the first time since I was a child.

CBT is the preferred method of treatment for OCD; specifically, the type of CBT used is called Exposure and Response Prevention (ERP).  Long name, but actually, it is exactly what it says! The patient is exposed to something that triggers an obsession and then the response (the compulsion) is prevented.  This therapy actually re-wires the brain—the brain physically changes in this therapy—and it helps an obsessive-compulsive to live with uncertainty.

The first couple weeks with my new therapist were mostly intake.  My therapist asked lots of questions to help assess what my obsessions and compulsions were, and what triggered the obsessions.  He was basically probing to find what buttons to push later: “How much would that stress you out if you couldn’t do XYZ after ABC happened?”  I knew it would all come back to “haunt” me, but I was all in.  This honestly felt like my last hope for a normal, happy life.

I took the YBOCS (Yale-Brown Obsessive-Compulsive Scale) test, a test used by therapists to help diagnose OCD, and determine a treatment plan, and found out that I was a moderate case, which surprised me.  But then again, there are some people who can’t leave their homes, can’t touch a loved one, people who wash their hands with Brillo pads and bleach.

My therapist outlined the measurable goals of my initial treatment plan: a fifty-percent reduction in distress when focused on upsetting stimuli and six consecutive weeks of no avoidance or rituals.  The next few months of therapy were starting to sound like a long, long time.

Since my obsessions were primarily religious-based (most often tied to blasphemy and a fear of hell and condemnation, a type of OCD sometimes called scrupulosity), my exposures needed to be imaginative (since, obviously, there was no way to literally expose me to hell).  So my therapist began to write a story, and my homework was to finish it.  It was the story of the worst day I could possibly imagine—pretty rough indeed as I ended up literally in hell in my version of the story!

My therapist recorded my story (along with his own additions to it) digitally, and I was sent home with an 18-minute recording from the pit of hell.  My job was to listen to it four times a day—two times through, twice a day—every day and record my anxiety levels when prompted. And I needed to do this consistently until my anxiety levels reduced by 50% from what I’d recorded on the initial exposure.  Oh, and I couldn’t perform my compulsions (repetitive prayer and seeking reassurance) to make myself feel better.

It. Was. Awful.

I won’t lie to you, listening to that recording—that exposure—was like torture.  It was being triggered left and right and not being allowed to do anything to ease my anxiety.

I hated it.  It made me sick to my stomach, made my heart race, made me terrified.  I tried to listen to the recording right away in the morning, in order to get half of my required exposures out of the way early in the day, but eventually, I couldn’t do it that way anymore—the weight of beginning my morning in such misery made it hard to get out of bed, and I had to push it all back later in the day just so that I wouldn’t dread waking up.

It felt like needless torture, and I honestly wanted to quit at about week 8 or 9 when my anxiety levels weren’t dropping.  I was frustrated with my therapist and was certain that I couldn’t accomplish all that he wanted. It was when I was at this lowest point, and felt like I couldn’t go on, that my therapist introduced me to a tool to side-step my way into the exposure.  Instead of thinking the blasphemous thoughts directly, he suggested that I think, “My OCD wants me to think X.”  It was just the tool I needed.

Within a week of implementing this side-step, things just clicked.  One day I was listening to the recording—this device of torture and grief—and instead of feeling terror, I thought, This is so annoying.  And then I smiled and thought, FINALLY.

This, of course, is just a brief description of my experience.  I could tell you so many more things—about how hard it was, about what other exposures look like for other types of OCD, about the tools my therapist gave me for success.

It was one of the hardest things I have ever had to do—but not as hard as living for 20 OCD-riddled years without help.  I hated to go through ERP, but I love that I have gone through it.  It rescued me and that period of ERP is a defining period of my life.  Now, four years later, I can only wish I’d experienced it earlier.

Readers, tell us what your first experience with ERP was like? Did you have a defining moment where things “clicked” for you?

28 thoughts on “My Journey to Hell and Back, A Personal Experience with CBT and ERP

  1. CBT/ERP: It was the best of times, it was the worst of times. The worst definitely came first. It was absolutely horrible, BUT I got my life (well most of it) back! My only regret was that I waited so long (13 years) to do it.

    Great post, Jackie! So proud of you!

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  3. Reblogged this on Being Me with OCD and commented:
    Jackie had the courage to do something I never went through myself–intense therapy for her OCD symptoms. By the time I found an OCD specialist I had already been taking medication for a while and felt better. The therapist I spoke to said exposure and response therapy (ERP) could actually make me feel worse.

    Read about her experience with ERP–her story is so inspiring!

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  5. Interesting post, 20 years must have been awful. I am in the midst of ERP, its definitely hard, but better then living with OCD. I am so happy I found a therapist to finally help me!

  6. As a sufferer of Homosexual obsessions, I suppose it really “clicked” for me when I was able to shake a man’s hand. This was a pretty big step in my treatment considering that I had, at one point, been entirely unable to look at men.

  7. Have to hand it to you, that was a great story. I think it is very inspirational. It is great how you are getting across to fellow people who struggle with OCD. When i was reading this i kept thinking how similar your ERP therapy was very similar to mine, although i had variating obsessions and compulsions from yours, my events seemed to play thru like yours. ERP was a main part of conquering my OCD. Again, great article and its awesome how you are helping people with OCD.

  8. Your post gave me so much hope, I know ERP won’t be a walk in the park, but I’m determined to succeed and find the right therapist, which was a thing I am so scared to do but I will because I can’t live like this. I’m happy that you overcame it and I hope one day, soon, that will be me too :)

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  10. Hi, I have OCD and finally after 7 years figured out that I haven’t been doing the right therapy. I live in the twin cities. Is there seine specifically that you can suggest for ERP?

  11. Your blog is giving me a glimmer of hope. My husband is suffering from OCD and we have been seeking help from a psychologist as well as a psychiatrist. The results have not been too good. We have given up on the psychologist and now I am beginning to doubt our psychiatrist. We really didn’t know where to turn and we just pick names out of our provider list thru our insurance. (Trying to find an OCD specialist that takes your insurance isn’t easy.) My husband has been put through the mill taking and trying all of these meds that I am so reluctant about. His Dr.has prescribed Prozac to take along with Geodon to help him with his fear of losing things. She also has him taking Xanax to help him anytime he feels overly anxious. The results from taking all these drugs have only made him feel worse…more anxiety, restlessness, cold sweats, panic attacks. and even lethargic. I am beginning to doubt that this is the right way to go. Right now his Dr.has decided to get him off of the Geodon because it is not doing what she thought it would. He is reducing his intake of the drug daily, but the the withdrawal effects for him are horrible. He breaks out in a cold sweat and can not sit still. In addition, she has suggested that he think about seeking further help in an outpatient clinic. (meaning more drugs with closer monitoring) Being that you once took meds to help you in the past, I was wondering if you are still on them to cope or if you have finally managed to control your OCD with just CBT and ERT? Also if you are no longer on meds, was your withdrawal from them a difficult experience for you as well??
    I have found some OCD specialists that do CBT and ERT from this website and would like my husband to seek help from them rather than stay on the path he is on now even if our insurance does not cover it. His condition has taken control of his life and everyday is torture for him. Any information you can give would be greatly appreciated. Thank you so much for your blog!

    • Hi Dolores,

      Thanks for your comment! I’m so sorry to hear about your husband’s debilitating struggle with OCD– I can definitely understand it.

      I continue to take medication (and may for the rest of my life)– but medication is not necessarily the answer for everyone. If I had to choose between having done ERP and taking medication, ERP wins hands-down. It is the BEST treatment out there!!! It is also the hardest. But still the best. :-)

      I wish you all the best in your continued search for freedom for your husband. He is lucky to have your help! Blessings on you both!

    • Hi Dolores and Jackie, I hope you don’t mind me chiming in but Dolores, your husband’s story is remarkably similar to my son Dan’s. He was on many different meds at various times, and they only seemed to make things worse for him. I found a psychiatrist who helped us wean him off everything. The one he had the hardest time weaning from was Effexor. Getting him off the meds was the best decision we ever made. His OCD was severe but intensive ERP therapy saved his life and he is now a college graduate doing great (OCD classified as mild). Still medication free, almost five years later. I know ERP therapy is not often covered by insurance but honestly, I can’t think of anything better to spend money on. I wish you all the best and you can check out my blog if you think it might be helpful.

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