nOCD, an ERP App/Hero

If you’ve spent time around this blog, you know that I wrestled my life and freedom back from the clutches of obsessive-compulsive disorder in 2008. (Read more about my story at jackieleasommers.com/OCD).

From the onset of my symptoms to my diagnosis: 15 years.
From my diagnosis to appropriate treatment (ERP): 5 years.
From treatment to freedom: 12 weeks. (<–Read that again please.)

Exposure and response prevention (ERP) therapy is powerful, friends.

On average, it takes OCD sufferers 14-17 years to get the correct diagnosis and treatment. This is not okay. 

So many OCD sufferers cannot afford treatment. In some countries, ERP therapy is simply not available. In fact, in some countries, the stigma associated with having a brain disorder like OCD is so strong that sufferers would not dare admit to needing help. This is not okay. 

The creators of the nOCD app felt the same way. One contacted me and said, “Our goal is to reduce the time it takes for people with OCD to get effective treatment (from decades to minutes).” He said, “One thing advocacy has shown me is the need for OCD treatment in other countries! There are people in Bangladesh, India, etc that have literally nobody! My team is actually building a 24/7 support community within nOCD to combat this issue.”

The app is FREE and, I-hope-I-hope-I-hope, going to change the world.

Some of the very best things about this app:

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Right now it’s available for iPhones, but this fall, the Android version will come out. Please check it out here. And be sure to tell me what you think!

xoxo Jackie

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.

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.

birdcage2

 

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.

 

OCD stereotypes and Pure-O

Just like any other group, obsessive-compulsives have their own stereotype, which is quite often perpetuated by media.  When most people hear “OCD,” they think of a neat-freak.  The truth of the matter is that, for some, washing and ordering are just symptoms of the problem.  Oh, and about 2/3rds of OCs are hoarders, so … yeah, that neat-freak stereotype falls a little flat.

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Personally, I identify as a pure obsessional (in our community we call it “pure-o”), which is actually a misnomer, because we pure-o’s still have compulsions.  My most common obsessions were about sin and hell, and then my primary compulsions were seeking reassurance* and internal repetitive prayer.**

* This usually centered around whether or not I was hellbound or whether or not something was “okay” and not sinful.  With some people, it would be an overt, “Do you think this was wrong?” or “Do you think I’m going to hell?” but with others, I would be more passive about it.  For example, at work, I would say something like, “I am terrible at this,” and then wait for someone to say, “No, Jackie, you’re not!  You’re great at your job!”  Both are forms of seeking reassurance, and it is a real compulsion.  I know because if I would try to keep myself from doing it, my heart would flood with terror.

** This was prompted by certain words and sounds– for me, usually curse words, words that sounded like curse words, and the sound of the letter f– and would include repeating the phrase “Father God, I love You; Father God, I love You” over and over in my head.  This was my way to combat the direction I knew my mind would go when I heard those sounds, which would be to curse at the Holy Spirit, what I believed to be unforgivable.

If you weren’t a close friend of mine, chances are you probably wouldn’t even notice my compulsions (although a roommate did notice what appeared to be a facial tic– when the repetitive prayer was cycling through my mind and someone was having a conversation with me, it would be so hard to keep both going that I would shake my head– just a little bit, like an Etch-a-Sketch– to “clear away” that repetitive prayer, et al, and focus back on what my friend was saying).  So there’s that.

And I am not a neat-freak.  Not by a long-shot.  Ask anyone who has ever lived with me, and they will tell you that I am a slob.  My friend Tracy would say I’m a “piggy”!

I know obsessive-compulsives who are washers, checkers, orderers, hoarders, but actually, most of those I talk to are pure-o.  You live with us, work with us, are friends with us– and you don’t even know it because we don’t fit the stereotype.  There is this joke that goes “I have CDO.  It’s obsessive-compulsive disorder, but the letters are in alphabetical order AS THEY SHOULD BE,” and I just find it so annoying because it seems to belittle OCD so much.  Even for those who are orderers and who would be upset by something like that.  People just don’t understand that there is a drive– a terror– so much fear and this feeling of disgust and wrongness if we don’t perform our compulsions.

It’s so much more than being organized or neat, even for those who are organized and neat.

What are some stereotypes you or others have of OCD?  I’d love to share the truth!

Oh, and don’t even get me started on the non-obsessive-compulsive people (those who are just straight-up clean or quirky) who then label themselves as “OCD” … grrrrrrrrrrrrrrrrrrrrr.  Yeah, maybe if it stood for “obnoxious chump disorder.”  😉

 

 

 

Guest blogger! What If?????

One incredibly common theme for obsessive-compulsives is to obsess about one’s sexual orientation.  A female OC could be attracted to men her whole life and have no real homosexual desires but she could still obsess like mad that she is secretly a lesbian … yes, in spite of having no feelings for women.  Those who suffer from HOCD (homosexual OCD) are tormented by continual questioning of their sexuality.  My blogger friend over at the Pure O Canuck Blog has written very honestly about this struggle.  Thanks for checking out her blog and subscribing!
Thanks,
Jackie

 What if?????
by Pure O Canuck

 I’m back from my vacation, and amazingly – OCD gave me some much-needed reprieve.  The hardest parts from an anxiety perspective were “getting there” and “getting back”.  Don’t ask me why.
I was in Palm Springs with three friends.  One of them was my closest girlfriend who I’ve known for over 25 years.  We don’t live in the same city anymore, and she is married with kids, so it was a fantastic chance to re-connect, re-live old funny memories (we laughed so much!) and just relax.  The weather was fantastic, and I had a wonderful time.
While we were visiting Palm Springs one of the large events taking place was an event called The White Party, which is a HUGE gay party.  I laughed with my therapist that this would be a fantastic exposure for some of his male HOCD clients.  For me, not so much.  It was just a bunch of great looking athletic men walking around town.  I did have a few triggers while on holiday though.  One of them was reading one of the local tourist magazines – I read that Palm Springs has a large gay and lesbian population.  Estimates are that at least 40% of the population is gay or lesbian.  My mind said to me “With that large of population what are the odds that you’re not going to run into a lesbian???”  Amazingly though, it wasn’t on my mind continuously.  Another trigger was while we were at a restaurant.  I was just people watching, and I saw two women walking out of the restaurant with their arms around each other.  Then one of the women proceeded to grab the other’s bum.  A small surge of anxiety, but nothing much.
I’m struggling with my exposure.  And when I returned from my holiday, my therapist slammed me with reality.  He was pretty hard on me (well, as hard as he can be on me…..he’s really a very kind guy).  But he was realistic.  You see, my latest BIG fear is that someday, given my history (horrible father relationship, unsuccessful relationships with men), I will meet a lesbian woman, become friends with her, and then fall in love.  It’s along the same lines of my ROCD fear that I have when I’m in a relationship.  I avoid other men because I’m afraid that I’ll fall in love with someone else and have to leave my partner etc etc.  My therapists response to this was: “Would that be so horrible if for some reason you found yourself in love with a woman?”  (Of course then my OCD says “your therapist really thinks you’re bi-sexual and he’s now trying to help you come to terms with that”.)
WHAT?  OF COURSE IT WOULD BE HORRIBLE!!!  That’s why I have HOCD!!
I just really want to be able to let go of this fear.  And my OCD wants me to figure out WHY I have this fear.  Does it mean that I’m really afraid of my true self?  Does it mean that I won’t ever truly be able to be happy until I figure this out?  It’s so hard to find love these days, am I sacrificing my whole happiness by not opening myself up to being with a woman? Maybe I’m really bi-sexual?  All of these crazy thoughts go through my head.  It’s horrible.
(Just writing this blog post is an exposure for me, because my OCD is saying “These people are going to read this and think that I really DO sound like I might be bi-sexual.”)
Why can’t I just be like anyone else and live my life until something actually happens????
This theme is rampant in the lesbian community too.  I’ve watched three movies with this theme.  It goes something like this:  The woman is living happily with her male partner, thinking, feeling straight, and along comes a lesbian woman who woos her into her web and their life is perfect, and wonderful and fantastic forever more.  Learning to accept the fact that this might happen to me, and not avoiding is one BIG hurdle I have in order to overcome my OCD.  It scares the crap outta me.
Another big theme we’re working on at the moment is the wonderful “groinal” response and arousal etc.  For any of you who suffer from any kind of sexual obsession, you will understand the distress that this causes.  I watched one of those aforementioned lesbian movies a few weeks ago, and I actually thought the movie was pretty good!  (It was practically impossible for me to actually allow myself to like a lesbian movie by the way.)  And watching some of those sex scenes were pretty darn sensual.  Was I sexually aroused?  I don’t know.  Maybe?  My therapist explains to me that people can get aroused from watching many types of sex scenes.  But then my OCD says “You don’t get turned on when you watch heterosexual sex scenes.”.  Some times I feel like my OCD wants me to just throw my arms up in the air and say “I’m gay!”.  And be done with it all.  Anyway, this “groinal response” is another big hurdle for me to overcome in my recovery.  My therapist wants me to try and become sexually aroused while watching these lesbian movies.  And live with the consequences.  Right now I’m just trying not to figure it out one way or the other.

At the end of the day I have to accept that I COULD find myself falling in love with a woman someday.  I have to accept that watching lesbian porn MIGHT turn me on sexually.  But at this point COULD = WILL, and MIGHT = DOES.  My therapist says that I have to want to overcome my OCD more than avoiding this possibility.  When he puts it that way I find it SO HARD to commit.  It’s days/times like these that I feel like I haven’t made any progress AT ALL.