A War in the Mind

war in my mindI remember the Sunday mornings in church when my mind was a war zone.

An intrusive thought would show itself, and with my Pure-O compulsions, I’d mentally bat it down (usually with repetitive prayer).  I was a ninja with my compulsion moves, but OCD was just as fast and furious.  Back and forth, back and forth, like a relentless game of Whac-a-Mole.

And no one knew.

All these happy people around me, worshiping God, taking in the sermon, happy and safe in their suburban church sanctuary– and, for me, it was a battle field.

Pure-O: so invisible, so dark, so exhausting.

I praise God that those days are a part of my past.  If you want to learn how I survived (and WON) this war, click here.  Your mind doesn’t have to be a scary place.

For (lots!) more about OCD and ERP, go to jackieleasommers.com/OCD.

Image credit: unknown.

Being Me with OCD by Alison Dotson

BeingMeWithOCDI first connected with Alison Dotson through the International OCD Foundation blog, where we realized that we were both from Minneapolis and made plans to get coffee.  I can still remember that first in-person meeting at Dunn Bros, one of those lovely times between two obsessive-compulsives finding joy and relief in saying, “Me too, me too!”

Alison’s book– Being Me with OCD— is aimed toward teenagers and young adults, but I think its audience is much wider than that.  It’s incredibly well-written, chock full of helpful information, and– most importantly, I think– it’s like sitting down with a friend.  While reading it, I kept thinking of my first meeting with Alison.  Her comforting, empathetic voice comes through so strongly in the book that you feel like you have a friend, a cheerleader, right beside you.

The book is part-memoir, part self-help, and is sprinkled throughout with personal essays from teens and young adults who offer wonderful insight into a variety of areas.  OCD is a strange beast in that, while it works the same way for most people, it manifests itself differently for each person, and the personal essays help the book touch on areas that haven’t been a part of Alison’s own personal journey with OCD.

I deeply appreciated her approach to medication.  I also loved that she dedicated considerable time discussing exposure and response prevention, even though she never underwent ERP herself.  Alison also spends time talking about overcoming stigma.

All in all, a great book for teens, young adults, or any age!  The best part is finding someone who gets it,
someone brave enough to share, someone on your team.

Read an excerpt. Buy the book on Amazon. Follow Alison’s blog.

I Confess

confessI don’t want to admit this to you.  I really don’t.

But I’ve made such efforts to be honest with my blogging community, and the wonderful, encouraging reception I’ve always gotten from you, my beloved readers, has continually encouraged me to continue with that honesty and integrity.

So today I’m going to tell you something that might make you made at me.  Here it is:

Sometimes I get really frustrated with people with OCD. 

Five years of freedom and already I am so quick to frustration.  Shame on me, right?  Then again, the last five years of my life (post-ERP) have been so absolutely incredible that they make me even more frustrated with those who avoid treatment.

The truth of the matter is this: exposure and response prevention is the best and most appropriate treatment for OCD.  Quite simply, if you’re looking for a “solution” to your OCD, then I have it for you: ERP.  I hear from a lot of people who seem to want a different answer, and yet my bottom line remains the same: ERP, ERP, ERP.

I know it’s scary.  (Trust me, I know it’s scary!)  But it’s the right answer, and I’m not going to send you on a wild goose chase when I know the right answer.  That would be like me telling you to go get chemotherapy for your gunshot wound or that you need insulin for your broken arm.  It’s obvious that those aren’t the correct treatment for the issue, and I won’t do that to you.

Research shows that ERP is the best treatment for OCD.  My life shows that a person with obsessive-compulsive disorder can redeem the years he or she lost to being enslaved by OCD.  No matter how many times you ask me, I’m going to give the same answer.

There.  Got it off my chest.  Don’t worry, folks; I’m still here for ya!  I aim to be a voice advocating for our quiet and oppressed community.  But just how I refuse to aid someone in compulsions, I will also refuse to send you down the wrong corridor for help.  I’m doing this with the best interest of our community in mind, I promise.

My heart and energies and motivations rest in leading those in slavery toward freedom.  Know that.

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.

Resisting Treatment for a Mental Illness

Consistently, I …
* talk to people with mental illness who resist beginning treatment.
* hear from those who’ve gone through treatment who wish they’d sought help sooner.

I get frustrated with the first group, but then I remind myself that I used to be a long-time, card-carrying member.  My college mentor encouraged me time and time again to just meet with a therapist at my school’s free counseling services center, and I balked and balked and balked.

I wish I hadn’t.

Today, I want to address four of the excuses I hear most often for avoiding treatment along with my best argument against them.

Too much money.
First of all, if you had a life-threatening disease, I can almost guarantee you that you’d find the means to get treatment.  Mental illness are often life-threatening– not always in the sense of imminent death, but they reduce the quality of your life and deserve your reaction to their severity.  There are prescription assistance programs, such as Partnership for Prescription Assistance or Walmart’s $4 prescriptions.  More and more, I am seeing churches starting free or pay-what-you-can counseling sessions with highly-trained lay therapists.  Obsessive-compulsives are able to do self-guided exposure and response prevention therapy from their own homes with helpful and inexpensive books like Stop Obsessing! or Freedom from Obsessive-Compulsive Disorder.

Too much fear.
I can absolutely relate to this.  Some fear vocalizing their anxieties; some fear they will do so and be told there is no hope (in which case, it feels less scary to stay silent and hold onto the tiny thread that there may be a rescue coming).  Some fear the treatment itself (I can very much understand this, as ERP, the preferred treatment for OCD, is a particularly challenging therapy that exposes obsessive-compulsives to their greatest fears).

Therapy for OCD was one of the scariest things I have ever had to do in my life.  It was awful– but not as awful as daily life with OCD with no end in sight.  Short of a miracle, your mental illness will probably not just go away on its own.  Now is the time to declare war.

Too much pride.
A blog reader told me the other day that he was disconnected from reality, could hardly talk to his wife, and felt like the loneliest person on the planet– though too proud to see a therapist and admit there is something wrong.

This is so hard for me to understand– even though this used to be me!  To me, it’s the equivalent of breaking your arm and then being too proud to get it set in a cast.  What are you too proud of?  That you are invincible?  No one is, and you are fooling yourself if you think you are.  Ignoring a real problem is nothing to be proud of.  It’s like when you realize you took a wrong turn and are headed the wrong way.  It makes far more sense to turn around than to continue on in the same wrong direction.

Too much doubt.
I have a friend whose life is crumbling right now, yet he refuses to get help because he doesn’t think therapy works.  I want to shake him a little and say, “Look around you– what you are doing right now doesn’t work!”  I know how easy it is to get trapped by indecision and by the feeling that no direction is a good one (that’s why I took one year off from my medication search), but in the end, you’re probably going to have to take some sort of step toward healing.  Even if you take teensy-tiny baby-steps, that’s okay.  Find a trusted friend and work out the best baby-step possible.

I know it is an expensive, scary, humbling, and doubtful enterprise– but please, please keep reaching out for help.

choice

Stigma, Part Two: I Don’t CHOOSE to be Unhappy.

Recently, the following was posted on the Twin Cities OCD Facebook page:

Happiness is a state of mind –

It is important that you understand and appreciate that your happiness lies within. Consider this – no one can make you unhappy if you have decided for sure that you will be happy in every situation. If you have made up your mind to be happy, you can always seek out the positive aspects of a situation and remain happy. Life may throw challenges at you but solutions will come faster and to you if you face them with a smile on your face.
Sounds easy? Its only a challenge at first-then momentum happens. 

And while I don’t think the poster meant to be offensive, I deleted it immediately.

People with mental illnesses are not choosing to be unhappy.  That is such an upsetting suggestion!  It’s like someone has accused me of poisoning myself.  Or being too weak or stupid to choose the right option.  It’s like saying, “Look, you have to understand that if you just choose every day to not have diabetes, it will get easier and easier.”

I don’t choose to have a body that absorbs serontonin too quickly.

do choose to take pills to slow that process down.  And to seek out therapy that gives me tools to manage my mental illness.  I can choose to treat it, but I can’t just choose to not have OCD or depression.

Please stop insisting that I am responsible for my mental illness.  

This, my friends, this is stigma.

stigma2

Related posts:
Stigma
More Stigma
Things That Offend Me
5 Easy (ha!) Steps for Finding the Right Medication
“Happy Pills”

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

Medication vs. Exposure Therapy

meds vs erpI have always been honest about my personal experience with OCD on this blog.  Faithful readers are well aware of my mama-bear protective instincts in regard to my medication.  I take Prozac, Effexor XR, and Risperdal each day and am utterly unapologetic about it.

That said, I completely understand that others have their own reasons (personal, medical, or otherwise) for avoiding medication, and that is perfectly fine by me (so long as no one tries to rob me of my meds, haha!).

People sometimes ask, Is it possible for me to treat my OCD and avoid medication all together?

While the answer varies from person to person, the best response I can give is that YES, it has been done with ERP (exposure and response prevention therapy) alone.  In fact, were I pushed to choose between my three daily doses of meds or my 12 weeks of ERP, it would be one of the easiest decisions of my life to choose ERP.

Every person is different.  I have an obsessive-compulsive friend who treats her OCD with only meds– she has never undergone ERP.  The son of one of my blogger friends uses only his tools gained from ERP– no meds.  Then there’s me, a girl who wants(/needs?) a full arsenal to treat her disorder.

So, what will it be for you?

The best treatment is ERP, hands down.  Start there.  See how you do.  If you can find an OCD specialist whom you trust, you may try to fold meds into the mix if you find that you need them.  It’s (unfortunately) a trial-and-error kind of thing.

Will you be okay without meds?  Maybe.  You’ll have to discover that for yourself.
Has it been done before?  Absolutely.

Hope that is helpful!

OCD, ERP, and Christianity

ocd and christianityI often hear from obsessive-compulsive Christians asking, “If my OCD is centered around my faith, will ERP still work even if my therapist is not a Christian?”

I’ve written elsewhere about how OCD is an arsonist, setting fires (obsessions) in our minds and how our compulsions are like shortsidedly trying to put out the fires instead of going for the arsonist directly.  You don’t need a Christian cognitive-behavioral therapist.  You just need someone who knows ERP and knows it well.  In other words, you need an OCD assassin.

If you are obsessing about the unforgivable sin or something else faith-related, you don’t need a great theologian to dialogue with you about it.  (In fact, chances are that you’ve already discussed this with all your Christian friends and maybe even a respected pastor.)  After that conversation with the theologian, you’re probably just going to start obsessing again, either about the same thing or something else.  You need someone who can take out the OCD, and yes, I mean “take out” in a sniper kind of way.

“But I’m worried that ERP is just going to cover up my real issues.  I don’t want to just forget about these things.  I want to solve them.”

First of all, you’re misunderstanding ERP.  It doesn’t sweep issues under a rug.  It’s not like you’re brainwashed into believing that life is now perfect.  Not at all!  It rewires your brain so that you can think the way “normal” people do– less circularly.

Secondly, you’re misunderstanding life and faith.  These things aren’t “solvable”– at least, not generally.  Sure, you might be the one person in a million who has God audibly speak to you one day– but probably not.  Life is full of uncertainty.  It’s a FACT.  And faith is about TRUSTING God even in uncertainty.

You need to get it out of your head that you will ever be rid of uncertainty in this life.

Back to the original question …

Your ERP therapist is not going to talk you through theological issues.  That’s not his/her job, and actually, it would be counterproductive to what ERP is all about.

If you can find an incredible cognitive-behavioral therapist who is also a follower of Christ, then yes, by all means, go to that person!  But if healing and health are your goals, then your first order of business is finding someone who knows how to do Exposure and Response Prevention.  You are looking for an OCD assassin, not someone to have tea and Bible study with.

Thoughts?  Further questions?