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?

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Do I have OCD?

Before my diagnosis and, hence, before I’d done a lot of personal research on obsessive compulsive disorder, I thought of OCD as “that disorder where you wash your hands a lot” or “the one where people tap the doorknobs” or “when you’re a really big neat freak.”  In some ways, my diagnosis was a surprise to me because I didn’t do any of those things.  But on the other hand, just the term obsessive sounded so much like my situation that I was willing to listen.

Maybe a year or so into my original search for medication (I ended up taking a year-long hiatus from the search after Luvox stole all my energy), I suddenly started worrying (or maybe even obsessing) that what I had wasn’t really OCD.  I seem to talk to a fair amount of obsessive-compulsives who also reach this point, worrying that maybe someone has plastered a name on them that is incorrect.  The interesting thing about this is that the OC usually feels guilty about it– as if they are receiving compassion and medical advice and help from friends and family for nothing, or what they are worried is nothing.

Interestingly, such a huge worry and incredible guilt only point to OCD all the more.

The more I have learned about OCD, the easier it is for me to see it in others.  Though I am by no means a doctor, I now believe that OCD is pretty easy to diagnose.

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It’s all in the name.

Obsessive-compulsive disorder.

 

1) Do you have obsessions?  Basically, do you have intrusive thoughts that you find ugly or disturbing but that you can’t seem to stop thinking about?  Common themes center around questioning your sexual orientation or if you really love your significant other, thoughts about harming yourself or others (even children), blasphemous or sinful thoughts, worries that you or people you love are going to die, sexual obsessions, intense fears about contracting a disease.  Ask yourself, do I have intrusive thoughts that cause me serious anxiety?

2) Do you have compulsions? The answer to this question might not come as easily, but what it is really asking is this: when I have those intrusive, anxiety-causing thoughts, what do I do to attempt to relieve that anxiety?  Maybe your fears about germs cause you to wash your hands, making you temporarily feel a bit of relief about that possibility.  Maybe your fear about harming a child means that you won’t allow yourself to hold your baby girl.  Maybe it even means that you avoid driving down the street where a lot of children play.  If you have blasphemous thoughts, perhaps you repeatedly ask God for forgiveness or you’ll ask other people if you think that means you are now going to hell.  Sometimes compulsions seem a little “magical” too– for example, you relieve the anxiety caused by your intrusive thought by tapping your foot a certain number of times or by avoiding stepping on cracks.  Even if it doesn’t logically make sense, it’s still something providing you some temporary relief.  Seeking reassurance is a huge compulsion for a lot of different kinds of obsessions: we glimpse relief when friends reassure us, No, you’re not gay.  No, you’re not going to get sick.  No, you would never hurt a child.  No, you’re not going to hell for that.

There is a third question to ask too, although this one may or may not be reached immediately, which is
3) Have your compulsions gotten out of control?
Most obsessive-compulsives reach a stage where the compulsions (that began as an anxiety-reliever) become too much and begin to add to the anxiety: you can’t stop washing your hands, you ask for reassurance so constantly that your friends are annoyed, you are driving a long way out of your way to avoid the street with children, you are tapping doorknobs and counting and repeating phrases in your head to the point that you’re starting to look a little silly.

Like I said, I’m no doctor, but when I talk to someone who wonders if they have OCD, these are the three simple questions I ask.  If you can answer yes to the first two, then you have OCD.  

So, what next?
1. Get an official diagnosis from someone who went to school for it. 🙂
2. Skip the talk therapy and go right for cognitive-behavioral therapy.  This is treatable.

 

 

There’s so much more to OCD than hand-washing …

washing handsIf you use Google Images and search “OCD,” what you end up with is a lot of photos of lame OCD jokes and of soapy hands.  It reminds me just how little the world really knows and understands obsessive-compulsive disorder.  Heck, before my own diagnosis, I myself pretty much thought of it as “that disease where you wash your hands a lot or have to tap the doorknob over and over.”  Insightful, Jackie.

While it’s true that contamination obsessions are a prevalent theme among OCD sufferers (I read somewhere that about 60% of OCD cases deal in this arena), that’s not the only obsessive theme.*  And even hand-washing is often misunderstood.  People just don’t understand that there are persistent, unwanted, intrusive thoughts that are driving the hand-washing or other compulsions.  Compulsions are a response to what I personally think is the darker half of the disorder: the obsessions.

* Other common obsessive-compulsive themes include a need for order or symmetry, hoarding, checking, sexual obsessions (including HOCD, in which a straight person obsesses about being gay, or a gay person obsesses about being straight), religion/morality/scrupulosity (my OCD world!), and aggressive thoughts around harming others or one’s self.  OCD is probably bigger, wider, and scarier than most people ever imagined.

 

Side Effects: Blocking

As I pursued the right cocktail of medication to help treat my obsessive-compulsive disorder, I encountered my fair share of side effects.  My vision would black out.  I had jello-legs.  Dizziness in spades.  Rapid weight gain.  Tremors.  Drymouth.  Lethargy.  Excessive sweating.  Lactation (yes, really).

But perhaps the most frustrating side effect was the blocking.

Blocking is a form of stuttering– but probably different from what you’d imagine.  It’s not the usual “t-t-t-t-today, junior!” where repetition features heavily.  It’s where your mouth physically stops from saying a word or syllable.

I found this description online, emphasis mine:

Blocking is not usually present in normal dysfluency and, as such, it is a principal indicator of stuttering. Blocking typically occurs when two articulators come together with excessive force, e.g. when the two lips come together to form the consonant sound ‘b’, as in the words bookboy and Bob. Rather than parting the two articulators rapidly and easily, the speaker is unable to release the contact between them and a great deal of tension may build up. In severe cases a speaker may be unable to release a blocked sound for around 5-10 seconds. Owing to the adverse effects on the person’s breathing – because the person is typically holding their breath during a block – talking can become quite exhausting. In addition, the sense of fatigue when speaking can be exacerbated by the increased muscle tension around the head and neck area and in the chest.

I’ll try my best to explain what would happen to me.  In the middle of speaking, my tongue (especially the base of it) would seize, and I would be physically incapable of saying the word for several seconds.  My mind has always worked faster than my mouth, but this was out of control.

The words were there but unable to come out of my mouth.

Not gonna lie, I’m a good speaker.  I’m articulate, and I can hold an audience’s attention.  For my job, I do a fair amount of public speaking– presentations at churches, schools, etc.– and it’s an area in which I feel confident.

All of that was stolen from me with the blocking.

stutterI was suddenly terrified of speaking opportunities, felt silly even in one-on-one appointments when I couldn’t just SAY. WHAT. I. WANTED. TO. SAY.  It felt like one more thing OCD was stealing from me– not just my public speaking ability, but my confidence.  I was so frustrated and shed a lot of tears around this time.

Thankfully, my brilliant psychiatrist knew what was causing the blocking (for me it was a too-high dose of Risperdal), and once he reduced it (I now only take half a milligram daily!), the blocking went away.

At a writing conference Q&A, a man in the crowd asked several questions, and his phrases were filled with blocking.  It was even on the same letters as me– b’s and p’s, those darn plosives!– and as he spoke, I could almost feel my tongue freeze inside my mouth, feeling like a thick, inoperative muscle– a weapon against me instead of for.

When Thinking Hurts

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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.

5 Easy (ha!) Steps to Finding a Medication

Congratulations on your recent diagnosis of mental illness!  You’ve just won a brand-new prescription!  Here are five easy steps to claiming your prize:

1. Overcome the negative attitude of everyone around you toward taking medication!  (Oh, goodie!)

2. Vanquish the stigma-induced fear in yourself that pills are going to steal your personality or somehow make your world into a playground made of rainbows.

3. Begin an awesome trial-and-error experience that could take years and years!

4. Battle against those pesky side effects that make you sweat, tremble, gain weight/lose weight, feel lethargic, cause drymouth, make you dizzy, impair your vision, induce muscle spasms, and– in some special cases– almost kill you.

5. Persist.  Because it really is worth it.*

 

*At least it was for me.  It was worth years of failed experiments and horrendous side effects– which are over– and years of shaming from others– which are not.  I am unashamed to take Prozac and Effexor XR every single morning and Risperdal every single night.  I don’t think meds are the “right” or “only” answer, but I do think they are a valid option, one that makes a difference in my daily life.

 

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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.

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a confession

Although cognitive-behavioral therapy threw off my OCD chains four years ago, I have to be honest: sometimes I worry that all the protective walls I’ve built around me will come crashing down.

I know that OCD is waiting just outside.  I see it in the parking lot sometimes.  Every once in a while it sneaks into my bedroom at night and sits menacingly on my dresser, whispering ugliness.

I have the tools to make it leave now.  It has to obey me when I tell it to go.

But what if one night I’m not strong enough?  What if my voice wavers, and it realizes I’m not as powerful as I try to sound?  What will I do if it pitches a tent in my apartment, moves back in with its suitcases of grief and terror?

I speak boldly of CBT and ERP as if they are stories of the past.  I say “freedom” like it’s a permanent thing.  But I can’t see even one second into the future.

Just wanted to share these thoughts with my OCD community.  I have great joy, and I delight in my remission, but I’m a real person with real fears.  As I’ve said before, I won’t tiptoe around my OCD– but I’m not going to provoke it either.

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God Has Me

This song is gripping my heart lately.  OCD whispered ugly lies to me for YEARS, but this was the truth.

“You Have Me”

Out on the farthest edge
there in the silence
you were there

My faith was torn to shreds
heart in the balance
but you were therealways faithful
always good
you have still have my
you still have my heart

I thought I had seen the end
everything broken
but you were there

I’ve wandered heaven’s gates
I’ve made my bed in hell
You were there still

You have me
You have my heart completely