Living With Me and My OCD: Check out the Trailer for Claire Watkinson's Documentary

In the summer, I recorded my story about having OCD for Claire Watkinson's documentary film Living with Me and My OCD.  I'm sharing the trailer here and Claire's introduction to the project, which is set for release in 2013.  I am excited that she has taken on this project to share stories of living with OCD.

My name is Claire Watkinson, I am a freelance filmmaker and a sufferer of OCD. Living With Me And My OCD is a personal documentary about OCD that I started filming in January. The feature is set for release in 2013. It will include interviews with sufferers of OCD, diary entries from myself, the Bupa Race, OCD UK and many more exciting organisations.

I am so happy by the amount of support and comments this documentary has recieved. I am touched and means so much. Please join this campaign. I need more interviews, people and interest. Get in touch, share this page and lets get OCD more talked about!

Claire Watkinson's Twitter for Living With Me and My OCD

Buy Living with Me and My OCD Wristbands

Check out the trailer:

How do you talk to friends about how OCD affects you?

In a comment on a recent post, a reader asked the following question:

I have a question for anyone reading this ... how do you let others know about your OCD so they can cut you some slack? 

I only recently realized how much this disorder messes with my daily and weekly functioning. I thought I had adult ADD but it's anxiety, not ADD. 

I live alone and my "circle" does not have any idea how much energy it takes me, sometimes, just to get out the door. Any advice on how to help them to help me would be great.

For myself, I told very few people about my OCD.  My husband, my best friend, people in my OCD Goal Support Group and then as I started Exposure Therapy, a couple more close friends.  With my husband, it helped that he was willing to read Jonathan Grayson's book Freedom from OCD.


I'd love hear what other readers have to say about how to talk to others regarding your OCD and how it affects your functioning.  

OCD: A Guide for the Newly Diagnosed: Review of Michael Tompkins' Book for Consumers

When New Harbinger Publications asked if I would consider reviewing Michael Tompkins book, OCD: A Guide for the Newly Diagnosed, I was heartened to know that there was a new book on this topic. The introduction is by Jeff Bell, who wrote an insightful memoir about OCD called Rewind, Replay Repeat, which I took to be a good sign.

The book fits nicely in the hand, and adds to the approachability for those who have just found out they have OCD. Actually, Tompkins starts with describing the process of getting a diagnosis, and I'm glad he addressed the difficulty of finding mental health professionals who are actually familiar with the many forms OCD can take. I would argue that the comprehensive diagnostic process described in this book really only happens with therapists who are specialists in OCD, or who have trained in Exposure Therapy, and have treated a lot of people with OCD. The therapist who diagnosed me basically said, yes, it sounds like you have OCD.

Tompkins does an overview of Exposure and Response Prevention Therapy(ERP), Cognitive Therapy, and medication as well as other treatments, as well as what questions to ask a potential therapist, and how to get the most out of sessions.

I particularly liked the chapter on developing a "Recovery Attitude" including accepting such things as uncertainty, imperfect outcomes, imperfect knowledge, learning to approach discomfort in order to get through to the other side, turning away from debate with your OCD, seeking support, not reassurance, and practicing everyday. As someone who has struggled with perfectionistic OCD, I constantly battled with the fear that I wasn't doing my treatment perfectly or that I didn't have perfect knowledge of my OCD. Tompkins points out that "good enough" treatment is indeed "good enough," and OCD is demanding perfection that doesn't exist.

The book closes with information about unhealthy coping, school and work issues, a list of treatment centers, and recommended reading. It's difficult to fit everything into an introductory book, an at times I wanted more detail, or found too much squeezed into a section, but overall this book would be an excellent addition to a public library's mental health collection, as well as college libraries and hospital consumer health libraries.

Michael Tompkins, PhD, is a licensed psychologist at the San Francisco Bay Area Center for Cognitive Therapy.

What do you want your life to be about? Acceptance & Commitment Therapy for OCD

My friend J. came over today for coffee, and I told her I was avoiding doing my therapy homework for tomorrow, writing down my values. Her eyes lit up and she said, "Oh, let's do it now, together." I think she would've made an excellent Exposure Therapist in another life! At first I was like "Crap." But enough of the healthy part of me said, ok, let's do it. J. lost her job just before I lost mine, and we are going some similar re-evaluations of our lives.

My therapist is having me work through "Get Out of Your Mind & Into Your Life: The New Acceptance and Commitment Therapy" by Steven C. Hayes, PhD. Some of the ideas of ACT are really useful for dealing with OCD, especially learning to observe your mind and let the noise be there, but doing what you really value in spite of it. At times the scientific language bogs me down, especially with an OCD desire to understand it perfectly, and I'm glad I'm working on it in the context of therapy, so I can get help with the perfectionistic tendencies.

My homework for tomorrow was to write down what I truly value in 10 different domains of my life, such as friendship, relationships, family, parenting, work, recreation, spirituality, citizenship, personal growth and learning, physical health and well being. J. set the timer for 1 minute for each category and we started writing what we want our lives to be about in each of these areas. Then Hayes asks us to re-read what we wrote, as if no one else would ever see it, and whether these are things we really value or whether they are things we think we are supposed to value. All of this is ripe for OCD over-interpretation, but framing the exercise as an exposure helped--writing things down in a minute, without knowing for sure if they really *truly* are my values, not to mention judging whether these are things I *should* value.

OCD only values reduction in anxiety--there isn't much else it cares for except certainty. When I do what my OCD demands, I get a temporary drop in anxiety, but I don't get to live much of my life. I value connections with people, and making art. I don't want my life to be about my rituals. The temptation is to fall back into my perfectionism OCD, and berate myself for ritualizing, as if somehow this will help me change. But one of my values is compassion, and persecuting myself for having OCD is not compassionate, and I am slowly learning how to have compassion for myself.

Sometimes the motivation to do exposures is hard to find because the anxiety is so gripping. My therapist is arguing that my values can help guide me, and help give me courage to face the OCD. What do you value? What motivates you to do exposures?

You can download the full 2-page version of the values chart here.

For a useful summary of ACT, Dr. Russell Harris has a good article:Simple Overview of ACT: To download a simple, non-technical, easy-to-read overview of ACT ( called 'Embracing Your Demons', an article he wrote for Psychotherapy Australia magazine) click here. I read this article several years before getting any treatment for my OCD, and it stayed with me.

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!

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

Free Treatment Program for People with OCD in the Philadelphia, New York City and Connecticut Areas

No-Cost Treatment Program for People with OCD

A Multi-Site Study for people in Philadelphia, New York City and Connecticut Areas from the University of Pennsylvania Center for the Treatment and Study of Anxiety

• Are you taking medication for obsessive-compulsive disorder?
• Are you still having bothersome symptoms?
• Are you interested in receiving no-cost treatment?

U/Penn's Center for the Treatment and Study of Anxiety is offering a treatment program for people who have obsessive-compulsive disorder and are currently taking certain medications for their OCD but still have unwanted symptoms.

If you are in the Philadelphia area, please call 215-746-3327. Greater New York Metropolitan area, please call the site at Columbia University at 212-543-5462. There is also a center in Connecticut. Learn more about this OCD research treatment program...

Knitting Myself Together

I learned to knit shortly before I began treatment for my OCD, and I fell in love with the process of creating something with sticks and string. When I knit, I am more likely to stay in the present moment, anchored by the motion of my hands and the texture of the yarn. At first, I had to fight the perfectionist voice telling me I'd never learn, but in fact I did learn, especially since the woman who taught me to knit told me that there are no mistakes, only "design features." She taught me to recognize my knitting "mistakes" and once I could "read" my knitted work, I could figure out how to correct it. I think this is true with many things in life--if I flee from looking at what is going on, how can I change it?

Knitting helps me with my social anxiety. I joined a knitting group, and I find I can participate more easily in conversation while knitting, and we have a common topic to discuss, and knitters tend to be really cool people!

Knitting also gave me something to do when I went through a spike in my hair pulling,. I'd always found running my hands through my hair soothing, and pulling out the gray ones, and when my anxiety accelerated in anticipating seeing my father, I pulled to the point of making a bare spot on the top of my head. Knitting was soothing, and also kept my hands out of my hair.

I don't make anything that has to fit. I don't knit sweaters or complicated lace. I could knit plain garter stitch forever and probably be happy, as long as I have interesting yarn to play with. I knit scarves for ship workers through the Seamen's Church Institute, which is very gratifying, knowing my scarves help keep someone warm.

Any knitters out there?

Related Sites:

If you want to try knitting, a great source of information on knitting is found at the social network for knitters, Ravelry.

Trichotillomania Learning Center for information about hair pulling and skin picking

Things that Help: Writing my thoughts down

One my blogger friends wrote a post about the notebook she keeps of all her symptoms, and how she wishes she could throw it away, that it's not a journal but a type of compulsion. I have a whole collection of dayplanners full of notations about body symptoms, plus charts I sketched out on big sheets of paper to try and figure it all out. I felt anxious if I "lost" a symptom--couldn't remember when it started or what it used to be like, and I felt compelled to document it all. Logging symptoms can be useful in some contexts, but in the context of OCD, it can be a ritual.

When I started treatment with Leonard, he suggested I write down my obsessive thoughts, as a way to recognize that they are thoughts, not facts, giving myself something breathing room, some distance. I was still dealing with remnants of an OCD meltdown that drove me into treatment, so I started writing thoughts down, even though the perfectionist aspect of my OCD threw a fit, "Are you sure you doing this right?" It was a fascinating revelation when I realized I could just write that thought down as well.

I'd done thought records in the past where the assignment was to dispute the thoughts, but this would quickly bog down in self-loathing of my perceived inadequacy in thinking. But writing down the thoughts and simply labeling the thoughts wasn't as scary, because *I* was the observer. Leonard likes to say that I've never been gone, that I'm in there, that my OCD thoughts do not define me, and I am not defective.

Everytime I write the word "Thoughts" at the top of a page, and then begin with quote marks, I feel freedom to just observe, rather than getting into a battle that usually ends with even more obsessive thoughts than when I started. Some labels became very familiar, "critical voice," "self-loathing," "figuring out," "retracing," and I had enough support from Leonard to risk looking at my thoughts without spiralling into even more self-loathing.

5 Things My Husband Does to Help me Cope with OCD

1. Supports me, not the OCD. He is empathetic to my struggle and my pain, but he doesn't reassure me in order to keep the peace.
   
2. Uses his sense of humor to highlight the ridiculousness of some of my OCD fears. He doesn't mock me, but the OCD is fair game.
3. Stays curious about the disorder. He read Jonathan Grayson's book Freedom From OCD on my request. He's not a support group kind of guy, and he isn't interested in going to the International OCD Foundation Conference with me, but he does educate himself about OCD.
4. Encourages me to do exposures, and is willing to get involved. If I am obsessing about what task to do next, he'll suggest I flip a coin. In the rare cases that his ADD mind actually gets stuck on something, he'll try an exposure out himself.
5. Affirms my decision to see an ERP therapist, even though it's expensive, because he sees the progress I've made.
   

Recovery Inc., and Dr. Low's Wisdom for OCD Sufferers

A few years ago I came across the writings of Dr. Abraham Low, a psychiatrist who is a early forerunner of Cognitive Behavioral Therapy. He created a self-help program called Recovery Inc., in 1937, to help mental patients reclaim peace of mind and their lives. I subscribed to Dr. Low's Wisdom, which mails a daily quote from one of his books. Sometimes he sounds very odd to my ears with his emphasis on complete trust in the physician, but he eloquently describes much of my experience with OCD, and advocates a form of Exposure and Response Prevention Therapy in his slogan "Doing the things you hate and fear to do."

I found an interesting blogger, Not A Saint--Just an Average Person, who describes his process of working through his anxieties and fears using Recovery, Inc.'s tools of identifying the thinking that leads to aggravation of symptoms.

I have not been to a Recovery, Inc. support group, but I know some people who have had a positive experience attending meetings. If there isn't an OCD support group in your area, consider looking into a RI group.

Support Groups for OCD: Finding my People

In 2007 I had the occasion to join an OCD GOAL group(Giving Obsessive Compulsives Another Lifestyle). A support group using the GOAL model usually has a therapist who helps keep the group focused, and when we break into small groups, any new people meet with the therapist for an introduction to OCD treatment. The format at my group:

1.	In large-group formation, discussion of some OCD-related topic selected by the Affiliate’s board. Each member present will be given an opportunity to share feelings and thoughts on this topic and may elect not to speak if he or she so wishes.
2.	In small-group formation, goal planning. Led by a recovering obsessive-compulsive, each small group will help each of its members formulate a specific and concrete goal whose accomplishment in the interval before the next support-group meeting will advance the member in the attempt to recover his or her life from obsessive-compulsive behavior. The taking on of this goal is voluntary.
3.	Socializing with refreshments.

The thought of attending a support group was second only to medication in terms of scariness in my mind! Especially the third part, socializing with refreshments, since I've had a battle with social anxiety. But the the chance to share my experiences with others who understood, and in turn to hear about their struggles and courage was extremely powerful, and the opportunity to choose a goal for the week of a concrete thing I could do to help fight my OCD was invaluable.

We had a phone and email contact list of members willing to be contacted during the week if you needed support for doing a particular exposure. Making an agreement to call someone before doing an exposure and and then after doing it allowed some members to accomplish tasks they never thought possible. I was still in the midst of my phone phobia, and didn't utilize phone contact very much, but the small group sessions increased the odds that I would find an goal for the week, and actually follow through.

Members showed incredible bravery in attending the meetings in spite of fears of driving there, or saying things imperfectly in front of others, or eating the snacks at break in spite of contamination fears, or admitting they had OCD, or being in a room full of strangers, or saying something that might harm someone else, or taking the slip of paper with the week's discussion question and answering without knowing for sure they really knew what the question meant.

I witnessed enough courage to know that it is possible to face OCD fears. If you think attending a support group sounds like an impossible task, remember that most of the people who come felt the same way. A good support group will encourage you to move forward, at whatever pace you can, and in the right direction.

One place to find a GOAL group is to contact a state affiliate of the International OCD Foundation. Some states have people working to start an affiliate, and are looking for interested folks. If you know of any other OCD support groups, let me know! I will post a list.

Related Pages:
International OCD Foundation Find a Support Group Database


Related Post:
Recovery Inc. Support Groups
Going Back to my OCD Support Group

Letting the Thoughts and Feelings Be There

I got to the grocery store this morning and started feeling overheated in my winter coat, and very tired, and running behind schedule, and felt a rising panic. I practiced letting the feelings and sensations be there without judging them.

I hate the whole concept, because I judge the feelings very harshly, and I want them gone. It's only because the escalation of panic due to my incessant judging is so painful that I even consider following my therapist's advice.

I'm fortunate that Leonard has worked with me in session to focus on sensations without judgement, asking me to describe to him the heat in my cheeks, or the tightness in my chest, or the pressure in my jaw, and letting them be there without getting into a wrestling match. Then he'll ask me if I can tolerate the feelings, as they are.

Tolerating is different than liking. It's often uncomfortable, unpleasant or painful, but without the interference of my OCD interpretations of "I'm going to die. I can't stand this. What if I am seriously ill? What if I lose it?" toleration is possible. It takes all the strength within me to admit this. But I've seen what happens when I battle the thoughts and feelings. I've seen it consume me, and intensify the sensations, and truly cause me to lose it, and this creates just enough willingness in me to consider there are alternatives.

OCD Toolbox: Freedom from Obsessive Compulsive Disorder by Jonathan Grayson

This book, Freedom From Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty by Jonathan Grayson, was very important in moving me to get help for my OCD. I'd spent a lot of time reading about OCD, but assumed that because much of what I dealt with took place inside my head, rather than physical rituals, Exposure and Response Prevention Therapy wasn't really for me.

Grayson went right to the heart of this by identifying mental rituals, and describing how to write scripts that expose you to your "Pure O" fears, and learn to habituate to them, and live your life. He gets the "obsessing about obsessing" quicksand of the OCD mind. And even more importantly, he introduces the concept of learning to live with uncertainty. I recognized myself in his descriptions right away, a compelling desire to have absolute certainty that a feared consequence will not happen.

OCD makes a lot of demands for omniscient knowing, for complete understanding, for predicting the future and insisting that questions be answered that no human gets answered. It sucks to accept the reality of our tenuous existence, but Grayson points out that we tolerate uncertainty in many aspects of our lives, if it is not one of our OCD triggers. He has an example of how someone who has no fear of driving takes the risk of crashing their car just go see a movie. Last week, I thought of this example when I heard that some people I know from choir were in the hospital because they had a car accident on the way to see a movie.

We take risks everyday, but often we don't think about it, because life is in itself risky, and if we wish to experience the joys that life offers, we have to keep moving. On a bad OCD day, I really hate this revelation, because the OCD insists that I can have certainty of safety if I just ritualize, and it's hard to let go of the fantasy. But the fantasy is at the expense of having a life, a kind of living death.

Another Good Book:
Rewind, Replay, Repeat: A Memoir of Obsessive Compulsive Disorder

Finding a Good Therapist for OCD In US and Canada

The International OCD Foundation(IOCDF)has an an OCD Treatment Provider List for the United States and Canada. There is a dearth of qualified Exposure and Response Prevention(ERP)/Cognitive Behavioral therapists, and it can be frustrating to find effective therapy, but this is the place to start.

What to look for:

• Behavior Therapy Training Institute(BTTI) faculty
  
• Graduates of BTTI
• If they are a graduate of BTTI and have a website, check to see if they mention ERP at all. Some take the training, but their sites show no trace of it.
  
• Specific mention of ERP in their listing
  
• Cognitive Behavorial Therapy(CBT) in combination with ERP
  

Keep in mind that this list is made up of therapists who requested to be on it, and there is a disclaimer that the IOCDF does not screen or research any of the therapists, but I do think it increases your odds of finding someone who is well versed in current treatment.

Related Link:
Tips on Finding a Therapist from Austin OCD Center
Finding a CBT Therapist

OCD Toolbox: Listening to Scripts/Imaginal Exposure

My husband had this habit, when records were still current, to play one side over and over, the arm continually lifting up and going back to the beginning. This drove me crazy, but it's the same principle that helped me to deal with my indecision. Jon Grayson discusses this in his book, and once I started writing and recording and listening to scripts as both exposures and support for doing exposures, I was able to give the healthy part of myself more airtime. OCD usually has a monopoly on all channels, and has worn deep paths into my brain, but scripts gave me some alternatives.

Traditionally, tapes were made on the itty bitty cassettes in answering machines that can loop over and over. I used QuickVoice recording software, which is very inexpensive, and fairly straightforward to use, which enabled me to record my scripts sitting at my computer with no additional microphone or device needed.

I then listened to the script continuously on my iPod Nano. I have about 50 scripts that I wrote and recorded. In the case of decision making, when I went grocery shopping, I would listen to a script I wrote about it never being possible to make a "perfect" decision and that OCD will change the criteria of "perfect" the minute I start to reach for an item, and that my life was waiting.

The key was finding what gave me the most unease about an OCD fear, and directly addressing that in the script, putting it out there, rather than running from it. Yeah, I might choose the "wrong" item and feel my face go hot, and a panicky ache in my chest. I might really screw up, and be haunted by regret about my poor decisions and never have any peace from the obsessing about obsessing.

For about a year, I took the shopping script with me almost everywhere I bought things, and listening to it continuously, logging many hours, and gradually, in combination with flipping a coin when I really felt stuck, I freed up a lot of time in my life instead of circling the aisles of the grocery store, looking at every item, reading every label, picking stuff up and putting it down, over and over.

Related Posts:
OCD Toolbox: Flipping a Coin

OCD Toolbox: Flipping a Coin

I noticed a gap between my last two posts, ie. how did I get from vetting my food choices endlessly to having a mediocre lunch on Wednesday and going on with my day. As an aside, OCD perfectionism makes it hard to credit myself for any work I've done, as if somehow I was magically transported from point A to point B, in spite of my general wretchedness. But I know that's not what happened.

One of the most helpful strategies, that my ERP Therapist introduced me to, is flipping a coin. This short circuits all the OCD crap about choosing the "just right" item that won't trigger a cascade of obsessing and compulsing. Instead, I make the choice to jump into the fray, and accept whatever randomly comes up, and live with the anxiety it may cause, until it dissipates of its own accord.This is both terrifying and incredibly liberating.

Often, in facing a menu, I'd go back and forth, back and forth between 2 options, so as an exposure I'd say, If it's tails I'm getting the first item, if it's heads I'm getting the second item. I don't usually have a coin on me, so I started using my watch--if the second hand is in the first 30 seconds of the dial it's one, and in the second 30 seconds it's the other. This also works with digital watches--if the last digit is even vs. odd.

This works best with "yes" or "no" questions, or choosing between 2 things, and only if I go into it intentionally as an exposure, fully aware that I might not like what I end up eating, and get a spike of anxiety that I didn't adequately examine my choices.

It helps to remind myself that even with an hour of indecision, and thinking through every possible option, I could still end up with something I don't like, and I've wasted an hour. I have no special fortune telling powers, and no amount of menu perusing is going to guarantee an obsession free meal.

Of course OCD is clever and tries all sorts of ways to insinuate itself--should I use the coin toss? Is this the right time to do the coin toss? I would fight back by flipping a coin to answer that question.

Related Posts:
OCD Toolbox: Listening to Scripts