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.

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.

Nesting Dolls: OCD All the Way Down

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.

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!

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.

• More about the Questionnaire
• Download a hard copy of the quesionnaire here
• Complete the questionnaire on-line

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.

Getting Stuck at the Grocery Store: Shopping and OCD

There are many ways OCD can manifest in relation to the grocery store, from fear of contamination, to checking to make sure you didn't leave anything behind, to over-responsibility(this package is a slightly different color--has it been tampered with? Should I report it to the manager?). Grocery shopping made me break into a cold sweat because each item I chose had to be exactly the right item. Partly this was a learned behavior. I watched my mother set aside the first item in a row and dig behind until she found one in pristine condition, examining each one closely. When I became an adult I did start to realize that the disqualifying flaws were usually invisible to most human eyes.

My OCD added a whole other layer of scrutiny to the process of shopping. I needed to know if I had the right rationale for choosing an item, and went into long mental analyses of why an item qualified or not--from nutrition to manufacturer, to whether I disliked the tv ads, to company ethics, to the size of the can, to price, ad infinitum. I was searching for a "just right" feeling, and absolute assurance that I was making the right decision.

I was afraid of making any mistake and regretting my choices, or that my husband would dislike my choices. My mind could generate seemingly infinite rationales for why I was picking one brand over another or one size over another, and if it didn't "click" with certainty, I had a feeling of dread, and I feared it would never go away. If I got to the point of picking up an item, and putting it in my cart, I might turn around and take it back out if another question came to my mind. I could get stuck in front of the shelves for 1/2 hr choosing one thing. I was exhausted and frustrated.

I also had an urge for completion. Once I went into a thrift store, planning to be there a few minutes. Instead, I started looking at the old china and dishes, and felt compelled to look at each and every piece. When I started to walk away, I'd feel panic rising up in my throat, "I'm not done." 45 minutes later I finally dragged myself out of the store, thoroughly disheartened. In the grocery store, I'd feel compelled to look at all my options, and in U.S. grocery store, that can take a long time. Even people without OCD feel that sense of overwhelm at times when faced with permutations of a single product that can take up an entire aisle.

I had noticed that however much I agonized over a decision in the store didn't determine whether I actually liked the product once I bought it, but the OCD was tenacious, and to keep my anxiety level down, I gave into the achingly slow process of going back and forth, looking at the top of the shelf to the bottom, putting an item in the cart, taking it out, circling the store. Once I went to a fabric shop and circled around for an hour until I finally chose a book as a gift for someone. The clerk said she'd noticed my wandering, but thought it seemed like "purposeful wandering." I felt embarrassed that someone noticed. Yes, it was purposeful in the sense that I was trying to tamp down the anxiety, but aimless in the sense that I didn't want to spend an hour this way.

It was even worse when I'd leave a store not buying anything, after an hour or two circling around it. Once I went to an arts & crafts store to buy a photo album, and my mind kept generating reasons why a particular album wasn't "perfect"--the color, the shape, the size of the pages. I'd try to designate one as "important"but once I picked up an album, the other criteria would suddenly seem urgent. After a couple hours I finally chose one, because it was on sale, but then when I got to the checkout, it wasn't on sale like I had thought it was, and I panicked and put it back.

Shopping was one of the first issues I dealt with when I started Exposure and Response Prevention Therapy. Next, I will be writing about a trip to the grocery store with my friend J., who is a spontaneous shopper--talk about an Exposure!