The Long Journey … to the Starting Line

"Cross That Line" by xLadyDaisyx on deviantArt

“Cross That Line” by xLadyDaisyx on deviantArt

It is SO HARD for OCD sufferers to be correctly diagnosed and then find the right treatment and a good cognitive-behavioral therapist.  In fact, it takes an average of 14-17 years for someone to access effective treatment.

That stat stings my heart.  I feel it deeply because of my own personal struggle.

I developed a sudden onset of OCD at the age of 7.  I wasn’t diagnosed with OCD until I was 22.  I started ERP (exposure and response prevention) therapy at 27.  That’s twenty years, folks– fifteen just till diagnosis alone.

Growing up, I just assumed that I “thought too much”– was an “overthinker” and especially sensitive to issues of morality. I didn’t understand that other people were also undergoing the same doubts as I was but were able to move past them with ease.  I, on the other hand, would get trapped.  The exit door to my brain was stuck shut, so all my thoughts just milled and churned and generated intense anxiety.  I didn’t know that others even had the same thoughts as I did, nor did I realize how it would be possible to let such thoughts come and go.

In childhood, I cried all the time.  In fact, I cried every single night for three years in a row.  I never told my parents about this.  I was so scared that they wouldn’t be able to “fix” me that I preferred to just rest in my own sadness, still clinging to the hope that *someday* I could be fixed.  As long as no one told me it was impossible, it still felt possible, and even thought I was terrifically sad, I kept that hope as my lifeline.

High school was a beast.  I got straight A’s (OCD drove me to perfectionism) and graduated at the top of my class.  I was a class clown, and I had some amazing friends.  But I battled intense spiritual doubts and lived in great fear.  My tenth grade year was one of the hardest of my whole life.  Only those closest to me knew it.

My doubts intensified in college.  They escalated to a whole new level.  Thankfully, I had a solid support system in my new friends (people who remain my support system to this day!).  And though they couldn’t understand what I was going through, they loved me.

After undergrad, things fell apart.  In a nutshell, I lost my grip on reality– my doubts had grown so large and out of control that I no longer knew if I could trust my friends or my own human experience.  Finally, for the first time in my lifesomeone used the words mental illness with me.  It felt shocking.

I was encouraged to meet with a therapist (unfortunately, a talk therapist– not effective for OCD), who also got me in to meet with a psychiatrist, and I was finally diagnosed with obsessive-compulsive disorder.  A diagnosis fifteen years in the making.

I spent about a year with that first talk therapist, and it was more damaging than anything else.  I finally “escaped” and never again set foot in that clinic.  Meanwhile, I was an SSRI lab rat, trying out a slew of various medications to treat my OCD.  I eventually went back to talk therapy– this time to a much better therapist, who was a true blessing, although she still didn’t truly understand OCD, and so my therapy included a lot of reassurances.  In other words, this kind, amazing woman who loved me was just reinforcing my compulsions.  Not good.  I also took a break from trying out medications after one stole all my energy and made me rapidly gain weight.  I was overweight for the first time in my life– all due to a medication– and have struggled with my weight ever since.

Five years after that initial diagnosis, my psychiatrist was out of ideas.  Literally.  She asked me what I thought we should do next.  I, of course, had no clue.  She referred me to an OCD specialist.

This incredible man– Dr. Suck Won Kim– changed my life.  He got me onto the right medication (almost immediately) and essentially required that I begin ERP, even giving me the name and contact information for the therapist who would ultimately allow me to bottle up my OCD and put a stopper in it.  Dr. Chris Donahue, to whom I’m forever indebted.

Twelve weeks was all it took.  In one sense.  In another, it took twenty years.

My life was a mix of depression, anxiety, compulsions, “bad” thoughts, and wrongness, and then twelve weeks later, I felt the burden of OCD lift from my shoulders.  I was giddy with freedom.  Five years later, I still am.

I hear from OCD sufferers every week who are in their 50’s, 60’s, or even older, who are still seeking appropriate treatment.  This absolutely breaks my heart.

On the flip side, I’ve had the incredible experience of meeting Maddie, 11, and her incredible parents, who leapt into action almost immediately and got her into ERP within months of her OCD onset.  In the same year, she developed OCD, was diagnosed, and was treated.  Marvelous!

That’s one of the reasons I blog about OCD.  To help people to understand earlier what they are dealing with and to encourage them to seek appropriate treatment (ERP, with or without medication).  It still just boggles my mind that in 2013, mental health practitioners still don’t know that ERP is the answer.  People get passed around from talk therapist to talk therapist, when the solution should be so ready, so available.

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

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.