Friday, June 25, 2010

Vacation and OCD: It wants to come along. . .

I'm getting ready to go on vacation. I know I am not alone in having my OCD get more active before travel to somewhere unfamiliar and away from routine. My husband said I am dramatically better than in past years, and he's right. Of course my OCD jumps all over this with, "Well, he just jinxed you. Can you live up to the pressure to be sane???" But I do know that in the past vacation was like a gauntlet of anxiety, with a big dose of anticipatory anxiety in the form of hypersensitivity to body symptoms, fears of getting a bladder infection, difficulty deciding what to pack, unplugging everything in the house, fear of dying while away.

This year though, although these same kinds of thoughts have occurred, I haven't latched onto them, and wrestled with them until I was a sweaty mess. I used to compulsively research vacations in order to try and get some kind of control, but I am learning that part of vacation is making it up as we go, and as daunting as my OCD finds anything spontaneous, I am making this an exposure, to have a good time dammit. . .OCD also came in the form of "am I enjoying this trip enough? Did I experience that right?" along with fear of not choosing to do the right activities at the right times, so again, big exposure time here, because the flashes of freedom, fun and joy I've had when I stay in the present moment are lighting the way.

Wednesday, June 23, 2010

Inconsolable: OCD Melt Downs

I watched episode 4 of VH1's OCD Project. The person I identified most with in this episode was Kristen. I don't have contamination OCD, but I've been in that paralysis of avoiding doing a task because I will do it wrong and ruin everything. For Kristen, putting away her laundry was a monumental battle that doesn't play as dramatically on tv as eating off a toilet. It took a lot of courage on her part to risk contaminating everything she had just washed, and then be deluged with the anxiety of wanting to clean it all over again. I love her brother Theo. He is her link to the former "free spirit" she said she used to be. He knows she's still in there somewhere.

The phone call between an inconsolable Kristen and Theo, as he gently told her he wasn't going to come get her, was very powerful. He reminded her that what she wanted was to get better, which means putting aside the desperate desire to flee the anxiety. My therapist just recently talked about the parallels between the intense anxiety of obsessions, and a child who is inconsolable. The fear is very "young," and comes from a different place than our adult selves. I recognized the intonation in Kristen's voice. I've done this with my therapist, where he has to guide me from point to point when I was frozen in fear.

But I am troubled by the dynamic between David Tolin and Kristen and his tendency to revert to "black and white, all or nothing" thinking when he interacts with her, with a dose of power struggle thrown in--his insistence on a 5 minute shower as an end to itself, his "either fight the OCD or don't," and the snarky comment about Kristen needing to drop the Princess Act. The therapeutic alliance is really important in Exposure Therapy for a lot of people. The first thing Leonard said to me when we met was, "You have to tell me if you don't like me, because rapport is essential."

Does David Tolin really believe that Kristen is just spoiled and stubborn? He said he wouldn't negotiate with her, that she needed to either do the Exposures or not. For some people, this might work as a strategy, but in my opinion it sucks. ERP has a high drop out rate, which is disturbing, because ERP is a treatment that works for OCD. I believe there is a temptation on the part of some therapists to label someone "non-compliant" if they don't do their exposures, instead of figuring out why they aren't willing to do them, and working to give those reasons less credibility. Even 20 years ago, people with OCD were considered hopeless by much of the therapeutic community. I'm sure it is exhausting being an Exposure therapist at times. It's exhausting living with OCD.

OCD will always want to bargain and argue, but people with OCD are more than just the OCD. The healthy part of Kristen signed up for a hellacious show because she wants to get better. That is who Theo addressed when he talked to his sister on the phone, and he acknowledged the fearful part of her with considerable compassion. When we feel OCD anxiety, it is using our one and only nervous system. It feels real. OCD has no respect for me as a person--it is all about reducing anxiety, even at the expense of having a life. It feels death defying to put away clean laundry if you believe it's contaminated. It isn't pretend. Facing that fear by doing Exposures takes courage, and in spite of the perception of Kristen as a Princess, she is showing a lot of courage.

Saturday, June 19, 2010

Nesting Dolls: OCD All the Way Down

Nested secrets
I am not a novice at Exposure Therapy, and expect that I *should* be able to know when something is OCD, and that I must be defective if I don't get it right. The metaphor that helps me sense what's going on more clearly is one of nesting baskets or dolls--the initial obsession is nested inside wanting to figure out if it really is an obsession, nested inside criticizing myself for being stupid, nested inside criticizing myself for criticizing myself, nested inside labeling myself a bad person because I am so critical and slow and imperfect. I practice identifying the nesting pattern to get some distance from it, and to recognize that every doll is part of the "big doll" of OCD.

I am working on accepting that sometimes I won't know if something is an obsession until after I ritualize--that I'm not perfect, that I am not omniscient, and that if I practice tolerating the anxiety I feel when I don't attempt to "undo" this lack of perfection with relentless questioning of my actions and retracing my thoughts, I will get better. The more I try to figure out why I am stuck in a loop and still doing rituals the worse my OCD gets.

I remember my therapist telling me that learning is by "trial and error" and I looked at him in disbelief. I assumed I had to do everything perfectly the first time. I know this sounds irrational, but as much as I might intellectually understand that humans have a learning curve, I feel panic during the process of learning. It's been 3 years since I started ERP, and my ability to tolerate making mistakes and doing things imperfectly has increased dramatically. I had a strong belief since I was little that if I was perfect then my parents would love me and approve of me--the concrete thinking of a child. This belief intertwined with my OCD, and so if I did something I viewed as imperfect, then I would compulsively try to analyze it, undo it,research it or avoid doing anything at all so I wouldn't make a mistake to begin with.

ERP went really slowly until my therapist and I figured out I was trying to do my exposures perfectly, and that my belief was that if I failed that meant I was a worthless human being. I would do the first thing on my hierarchy of exposures, and immediately have the thought that it was inconsequential, inadequate, nested inside the thought of "I should've done this years ago," nested inside of "I'm a failure for moving so slow," nested inside "And this is yet more proof I am a defective human being." Then I would avoid doing any more exposures. It's hard to get motivated to do exposures if I feel both anxious, and in danger of proving I am a bad person. . .I'm learning to take the risk of doing things "wrong" on purpose--that it doesn't determine my worth, and that the ocd is promising something it can't deliver--perfection.

Wednesday, June 16, 2010

IOCDF Conference, July 16-18th, 2010!

I am disappointed I won't be attending the International OCD Foundation Conference, July 16-18, 2010 in Washington, DC. I went 2 years ago when it was in Boston, and learned a lot. Part of it came from driving up with members of my support group and sharing a hotel room--lots of exposures in just being myself and tolerating the anxiety that comes with being an imperfect human. The sessions were good too, and it is amazing the number of people with OCD and their families and friends who attend this conference. It's not a closed academic conference. We are there and hold the professionals accountable and that must be a bit scary for some presenters! It's amazing to witness so many people learning about OCD and for the first time realizing they are not alone, and that there is treatment. If there's anyway you can attend, I would encourage you to do so!

Some sessions are aimed at therapists, researchers, some at people with OCD, kids with OCD, but you are welcome to attend any session no matter who you are. I was glad to hear thoughtful discussions from Renae Reinardy, Charles Mansueto, Jeff Bell, and Michael Jenike and I look forward hearing this year's sessions, including Fred Penzel talking about health anxiety, and Allen Weg, who writes a great column for the New Jersey OCD Foundation using metaphor as a way to help us fight the OCD.

I did go on the infamous Jon Grayson "Virtual Camping Trip," which is powerful for many people, as a large crowd moved through Boston, doing exposures for contamination, and harm fears. I think the exposure aspect for me was just being there, since my social anxiety was kicking up, and feeling awkward as what I "should" be doing.

If anyone is going or has been to a conference, I'd love to hear from you!

Tuesday, June 15, 2010

Take a Survey to Give Insight into OCD

OCD Action, is national charity in the UK focusing on Obsessive Compulsive Disorder (OCD). They provide support and information to anybody affected by OCD, work to raise awareness of the disorder amongst the public and frontline healthcare workers, and strive to secure a better deal for people with OCD.

Members of OCD Action are compiling input for a book on by and for people with OCD and they are asking for input through a survey, OCD Insight. I filled it out, and was glad to have the chance to contribute my experience in hopes it will help others with OCD. I encourage anyone with OCD to complete it as well.

Monday, June 14, 2010

My Grocery Store Exposure


I just watched the grocery store episode on VH1's The OCD Project, and could identify with all the fears that get stirred up in that context. I am fortunate to have a wonderful friend, J., who has been a supporter and encourager when it comes to dealing with my OCD. A few months after starting ERP treatment, in July of 2007, I told her about my anxiety when making decisions at the grocery store, and she offered to take me shopping and show me how she does it. Of course she shops at Wegmans, which was the first challenge, since the sheer variety of items makes me nervous, with visions of getting stuck trying to choose.

Shopping with J. was like going to a foreign country. She was excited. For her, Wegmans is a sensory experience, an adventure, game and scavenger hunt. We started in the produce section. J. didn't have a list, and instead moved toward whatever caught her eye, like the red grape tomatoes or the green leaf lettuce. I was already feeling dazed by the multitude of people, since I usually shop early on a Sunday morning to avoid other shoppers, the ambient lighting, and the high ceilings, not to mention the unmoored free-falling anxiety that came when imagining picking up an item in putting it in my cart without second-guessing, thorough analysis or looking at every single variety.

J. made her decisions based on her feelings which she trusted implicitly, and trusted her senses to lead her to feelings and good memories and associations with the item. Does it make you happy? Does it make someone in your family happy? In the cosmetics aisle, she smells a sample of lotion, and since it smells good to her, in the cart it goes. It wouldn't occur to J. to look at every item, because the items "call to her". My OCD on the other hand was screaming,
"What if you miss something? What if you don't choose exactly the right one? What if you make a mistake and regret it?"
On the candy aisle, J. encouraged me to choose a chocolate bar, and as she looked over at me, she exclaimed that I looked terrified. At that moment she said that the reality of my fear was expressed in my eyes. Just having her acknowledge my fear was incredibly helpful, and her encouragement made it easier to take the risk of picking up a chocolate bar in what seemed like split second pace. Then she said, "Take two," and I asked her if she was nuts! To this day she remembers the stunned look I gave her--as if choosing one item "imperfectly" wasn't enough, she asked me to take two of them. . .but I did it!

J.'s imagination was positive--she imagined it would be fun to try whatever she bought. My OCD imagination was all about feared consequences and unpleasant anxious sensations in my chest. In J.'s view, if she doesn't like the item it's not the end of the world. Maybe she might be a bit nervous, but for her it's "Oh, well." For me, a perceived mistake was panic-inducing, and my ritual was to come up with elaborate rationales for making a perfect decision. Choosing what to buy based on my preferences was an alien concept, because I'd let the OCD make so many of the decisions in order to avoid feeling anxious, and because the OCD desire was to know *for certain* what my preferences were. I made a lot of guesses that morning about what I might like or my husband might like, and for how exhausted I was at the end, I was also exhilarated that I'd thrown things in the cart and kept moving.

My OCD gave some backlash later, wanting to figure out the dangers of choosing spontaneously, and then deteriorating into self-condemnation,
"But what about fiscal responsibility? What if my judgement can't be trusted? What if J. needs to be guided more by rational thought rather than feelings? What if I wasted money? What if J. isn't a good example for me? Who cares if you went grocery shopping? Shouldn't adults be able to do this? "
But my friend's compassion for my fearfulness gave me strength. She accepted that I was scared, and that I was working on facing my fears. And I also recognized that I didn't have to become J.--that I would always have a list--but that I didn't have to operate by OCD rituals either.

Wednesday, June 9, 2010

An Imaginal Exposure Script for Indecision OCD

I'd like to share the Exposure script I wrote for indecision about what to do with my time. What worked for me in this script was including my feared consequences for choosing the wrong task, which was both fear of being haunted by the mistake, and discovering I was a bad person, and listening to it repeatedly until my anxiety level came down. When a feared consequence is related to something as essential as a person's worth or right to exist on the planet, it really helped to have a therapist who challenged those old beliefs I held, those remnants of pain.

Script for Weekends/Free Time, 5/12/07

What if I should be doing something else? What if I choose the wrong task to do first? What if this anxious feeling in my chest doesn't go away? What if no matter what I do, I have this dread on weekends and during free time? OCD tells me I must make the right choice or I will be filled with regret. I will not see the fruition of any of my dreams--to be an artist, have a business, to enjoy my life with my husband. OCD demands I follow a rulebook in order to get what I want, but the rule it has for is "Obey me." If I enjoy my day OCD says, "You're not doing anything important, you need to save the world, people are suffering." If I don't enjoy things, OCD says, "YOu are a bad person since you can't enjoy the privileges of your life. You are a complete f---up." In order to get better, I will have to accept the risk that I'll make wrong decisions, because there is no rulebook. No human being knows all the ramifications of each and every decision, and I need to practice moving through my day under my own power, even if it means I have less enjoyment than I would if I wasn't anxious. OCD is stealing my life, and stunts my dreams. I may be spoiled, ungrateful, privileged. I may be incapable of sustained pleasure and achievement, but my behaviors do not determine my worth as a human being.

Tuesday, June 8, 2010

What should I do next? OCD Indecision about what to do when.

so what now graffiti
So what now? This question could stop me instantly. As a college student, I dreaded weekends and holidays, when I had more control over what I could do with my time, because of an obsessive fear that I would choose the wrong thing at any given moment, and be haunted by my mistake, and have to live with intolerable anxiety. Then I got a job working alone, a self-directed, independent position, with no coworkers, and my OCD got worse. Now I had to decide what to do each and every moment, and I was petrified that I would choose wrong.

My compulsion was avoidance of making the decision, through web searching, researching, analyzing and waiting until I felt "just right" about taking an action. If there was an urgent deadline, I could meet it, because I could feel the "rightness" of completing that assignment, but inbetween these islands of clarity was a rushing river of confusion and overwhelm.

On my days off I would stay in bed after the alarm with an ominous sense of inadequacy. What would I do with my day? Would I screw it up? How would I know which things to do and when? Once out of bed, I might think of something to do, and then feel a pervasive dread that I might be making a mistake, and I'd put off doing anything(which of course is a decision in itself). I'd get ravenous because I couldn't decide what to eat for lunch. I'd turn on the tv and flip channels for hours as a distraction. The only thing that saved me from web searching was my slow dial-up connection.

When I started ERP Therapy, I started to realize that I wanted to know for certain what my next action should be, but most people without OCD didn't get stuck on this. From my perspective, it seemed that non-OCD people were randomly guessing what to do next, and that scared me. I also realized that in my indecision I wasn't getting anything done, and I was losing whole swaths of my life to the ritual of choosing "perfectly."

One of my first Exposures that occurred to me, was making a schedule for the day, with a 15 minute time limit, and then following my schedule. I did this for several months, and I learned a lot from it. First, some of my choices were better than others, but I got a lot more done by "guessing" what I might need to do, and in what order. Second, the urge to make a "perfect schedule" was very strong, as was the desire to perfectly follow the schedule, and I practiced purposely choosing something that didn't feel "exactly right," or deviating from the schedule. Third, it helped to record a script about what I was losing when I gave into my compulsions, primarily the direction of my own life, and abdication to the OCD. I felt distress giving up my illusion that I really could choose the right things if I just tried hard enough, but also relief.

Monday, June 7, 2010

Challenging OCD One Step at a Time

The expression "Not seeing the forest for the trees" resonates with my experience of being in the OCD. I get lost in these trees, seeing every rock, every bit of moss, tiny insects, and getting cold and exhausted. I've been practicing the skill of taking an aerial view and seeing the forest of this disorder as a whole. Often I am disappointed when I catch a glimpse from the treetops, and my heart sinks, "Oh, no, I'm obessing again," but seeing that I'm obsessing can be the first step to challenging the OCD.

What do you do when you realize you are obsessing and doing compulsions? Often I condemn myself, feel angry at myself, feel despair, and most detrimental, assume I've already ruined the day, and that there is no hope of salvaging it. OCD thrives in black-and-white thinking. Either the day is perfect or it is ruined. Either I am challenging my OCD all the time, or I am a failure. And OCD fully exploits this by dismissing how humans really learn, which is by trial and error, bit by bit, and my anxiety rockets up, and I do even more compulsions trying to get the anxiety back down.

When it comes to challenging OCD, anything above zero is good. I'm serious about this. At times it's hard, because my progress seems so meager, and that's why going to a support group helps. Members of my group knew that if I lasted 5 minutes before researching a health symptom, this was a victory, because in the past I'd be searching before I even realized it and the day would be gone.

At times OCD seems like something from Grimm's Fairytales. OCD tells a tale of a happy ending if you just do whatever it demands. Of course the original stories by the Grimm brothers are full of violence, fear and destruction, not nearly what we imagine to be a "fairytale" in our era. One way I challenge my OCD is to ask,
Is it promising something I can't really have? Is it offering an illusion of a happy ending?

If I am honest with myself, the answer is yes. OCD is promising I can know things in advance, omnisciently, and perfectly, that I can know absolutely that I am making the right decision, that I can protect everyone I love completely, that I can make sure bad things never ever happen. The more I listen to the OCD, the longer I wander in the thicket.

Related Post:
Going Back to my OCD Support Group

Thursday, June 3, 2010

VH1's OCD Project: Reactions from Someone with OCD Part 2

VH1's OCD Project premiere with Dr. David Tolin was hard for me to watch. Not because of the shoe licking, but because Exposure and Response Prevention Therapy(ERP) is portrayed as something to be inflicted on people with OCD in a boot camp manner, with a dose of "all or nothing" thinking thrown in--ie. either fight your OCD or get out. If my therapist demanded I do exposures "for my own good" I would flee.

Leonard often says that if clients don't agree to the goal of learning to live with uncertainty, they are not going to want to do any exposures, and his job is work in partnership with clients to understand the nature of OCD and of the need to accept uncertainty. OCD isn't happy with 99.9% assurance that my health symptoms aren't dangerous. It wants 100% certainty, and this can make my life hellish. This is not to say that Leonard isn't frank. He'll tell me that I could worry about one symptom and then have a completely hidden disease kill me, but if a therapist feels their job is to push their clients off a cliff into dramatic exposures, this is inappropriate.

ERP is about starting with what you can and *will* do. What is the first step you can take to fight the OCD? I was often paralyzed with making perfect decisions. I started with a small exposure of choosing something by flipping a coin, at least once a day. Should I wear a green shirt or a blue one? Flip a coin. This created a wave of anxiety in me, but not so much that I was unwilling to do the exposure. Then I moved on to choosing something that didn't feel "perfect." If you find yourself thinking your therapist is crazy for suggesting certain exposures, you need to talk about it--and that in itself is an exposure, if you fear even verbalizing what you are really afraid of. If my therapist yelled at me, or goaded me into an exposure, I wouldn't get the benefit of treatment, because I don't respond well to this style. People with OCD have a range of temperaments, just like all humans.

The irony is that all things considered, if the participants in the OCD Project aren't scared off, and stay in therapy, and do the exposures and don't secretly do rituals to "undo" them, they will be better off than if they went to a traditional therapist who wants to talk about the reasons for the content of their fears. Arine's story is particularly poignant, with her fear of harming someone while driving, after her father and grandfather were killed in horrific car crashes, but making the link between this event in her life history and the manifestation of her OCD is not enough in and of itself to help her break free of the anxiety. There are many ways in which each of us can cause harm to our fellow beings, but to consistently eliminate all risk is both impossible and the attempt erodes our ability to do good in the world.

VH1's OCD Project Premiere: Reactions From Someone with OCD Part 1

I've been hearing a lot about the OCD Project on VH1. I don't have cable, but found the premiere online. The host is Dr. David Tolin, a clinical psychologist, founder of an Anxiety Center and who teaches at Yale. He's got credentials. He knows what OCD is and he knows how to do Exposure and Response Prevention(ERP) Therapy, but throw in the world of reality television and things get dramatized. The trailer for the show has Tolin licking the bottom of a shoe.

ERP is hard enough without it being portrayed for maximum revulsion. Exposure Therapy is about learning to live with uncertainty about how clean, safe, or right things are, and no human enjoys thinking about this kind of uncertainty. I am disturbed by the paradox that a tv show is actually showing a proven treatment for OCD, but in such a way that some people will be scared away from trying it. Not everyone will be scared--some people are so tormented by their OCD and combined with a certain personality, kick OCD to the curb with big gestures, but most of us take small steps at a time.

How often do you need to lick a shoe in real life? Treating OCD is more about the subtle issues in daily living. Dr. Jonathan Grayson has a vignette on his blog, entitled "'Normal' People Don't Know What They are Doing, "about pouring potato chips on the floor at a lecture on OCD and proceeding to eat some, and offers to share. There's a general "ewww" response from the college kids, but then he asks them if they sit on the floor at parties, and many say yes. Then he asks if they wash their hands before eating snacks at a party, and many do not. As he says,
”Normals” may say they won’t eat after touching the floor, but they don’t really know what they are doing.

I don't have contamination OCD, and this vignette made me think of how I put my shoes on, and then later might lick my finger to get a plastic bag open, or pick something up from the floor and then later pop a piece of candy into my mouth, all without washing my hands first. I'm inconsistent. If I pet the cat, I wash hands before food prep. This is salient in my mind, but if I pet the cat and then walk by free cookies, I'll pick one up and eat it without thinking about it. I'm not talking about a wanton recklessness here. If we were to be 100% consistent about avoiding contamination, we would be paralyzed by the "dirty world" we live in.

I joked with my therapist that our sessions wouldn't work on tv, and he said, "On PBS!" which made me laugh.