Avoidance is not Benign in OCD or for the Body

Frozen Shoulder via Raysto on Flickr

I did an exposure by calling a physical therapist about my shoulder pain.  Part of my health anxiety assuming I must know what is wrong with me, choose the right kind of therapy, and "know before knowing."  The PT said I have a frozen shoulder, which in part arises from avoiding moving a shoulder that is painful, and the more you avoid, the more stuck it gets.

What a metaphor for mindfulness, facing fears, doing exposure therapy for OCD!

Avoidance can bring on the very thing we fear:  anxiety, pain, suffering.

Of course, frozen shoulder is somewhat of a mystery, as to how it arises in the first place. Uncertainty stirs my OCD.

But I am proud of myself for choosing to do something, one step at a time, rather than continuing to wait until the "perfect " time to call and the perfect kind of professional(family doc, physiatrist, physical therapist, massage therapist, chiropractor).

What do you avoid?  What step can you take toward it?

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

OCD Cartoon by John Spottswood Moore

Dr. Michael Jenike on the Yahoo OCD-Support Group mentioned this short animated video about OCD. I resonated with the spreading nature of the character's fears. I don't have contamination OCD, but the process of OCD thoughts multiplying was very familiar.

AIYH Sample from John Spottswood Moore on Vimeo.

OCD A to Z M is For Medication

I knew I wanted to write about medication as my M word, but I was feeling anxious about it. My path to taking medication was long and convoluted. I'm up to Part 7.5 of my medication story, as you'll see from the list of posts below. In Part 7.5, I had been off my SSRI antidepressant(pitifully low dose for OCD) for several months, and increasingly trapped in my anxiety about my body.

My incessant seeking of answers about my symptoms led to more medical tests, including a biopsy and a freak accident, after which I could barely sit or walk, and all manner of bandaging as the wounds slowly healed. I've never experienced pain like that before. Getting in and out of the car was an ordeal. Yet in the middle of this crisis, I realized I needed real help, and I found a therapist on the International OCD Foundation list, who specialized in Exposure Therapy, and made an appointment, just a week after my injury. I drove 1.5 hrs through traffic, in raw pain, and limped into the therapist's office. I was trying to sit on the couch and talk about my symptoms of OCD, while feeling like a freak.

This Exposure therapist referred me to another therapist in the practice, Leonard, who helped me change my life. I had gone back on my tiny dose of the SSRI after finding out my sister-in-law had had a heart attack at age 49, and the health anxiety was more overwhelming than my fear of medication. Leonard advised me that OCD often responds to larger doses, and with my doctor's approval, I slowly ramped up my dose of the course of a couple of months to the maximum. Leonard didn't patronize me. He didn't throw meds at me. He helped me to see that in order to do my exposures, and have some breathing room from the OCD, that a high dose could aid that. I'm still on that high dose, and in the process of slowing down my ERP therapy, as I've made tremendous progress. In the past my OCD would be agitating to get me off meds right now, because of needing to know right now if there are long term effects. I still get those thoughts, but if I go off the meds, it will be on my terms not the OCD's, and for now, the benefit of reclaiming my life is enough.

Part 1: OCD and Medication Decisions
Part 2: Starting Medication while Struggling
Part 3: The Limits of Research in Medication Decisions
Part 4: My First Prescription for SSRI's
Part 5: Feeling it in the Jaw: Side Effects of Medication
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Tune into Healthy Place Mental Health Radio Show for an interview on OCD

I was honored to be asked to be a guest on Healthy Place's Mental Health Radio Show, this coming Wednesday, October 27th, 2010 at 8:30 pm Eastern Standard Time, to talk about my experience with having OCD and doing Exposure Therapy. Click Here to Listen.

It's also an Exposure for me to do the show, since it involves being on the telephone for 15 minutes! But I'm excited to share what has helped me in hopes that it will help others with OCD, particularly health anxiety, perfectionism and indecision.

I didn't know about Healthy Place Radio, and was interested to read their blurb:

. . .HealthyPlace is a privately held company started by people who are committed to the idea of reducing the stigma surrounding mental health and who feel that making authoritative mental health information available to the general public is a key part of achieving that goal. We are based in San Antonio, Texas. Our revenues are generated through the sale of advertising on the HealthyPlace website. HealthyPlace is not owned or directed by companies that sell any products or medications. None of the articles are written or influenced by companies advertising on our website. All advertisements and sponsorships are clearly identified and labeled. (you can read our editorial and advertising policies)

So be sure to tune in! The show should also be archived so you can listen to it after as well.

Related Post:
My Experience with Exposure Therapy on Healthy Place Radio

OCD and Living in my Head

I tend to go awry on new projects. The OCD is opportunistic and latches onto anything new with leech-like vigor. My intention was to find an avatar for this blog and several hours later I was past the time I needed to leave my computer, looking for an image that "felt just right."

Perhaps you have had this experience of not feeling finished, even if you can't articulate exactly what finished would mean.

OCD is seductive and says, "Just search another minute, or 15 minutes, or until the top of the hour or until you've looked at every single link in a list. . ." and before you know it, you are oblivious to your life, and completely in your head.

I did find an illustration. I still had misgivings, but just enough self-awareness to know that it would be good exposure for me to go with it in spite of this. It is an etching by George Cruikshank from a series he did of human capabilities, in this case ironically illustrated by a snail. Inhabitiveness resonated when thinking of the old habits I inhabit, like compulsive researching. My fingers are itching to do some major research of who this author was, and etymology of the word, but for this blog to be about Exposure Therapy, I am practicing just writing.

OCD steals the present moment. I had no real sense of what was going on around me while I searched for an image. I was firmly in my head. I'd like to move into the rest of my body. The snail at times also seems like my totem animal. I feel like I am moving very slowly in moving beyond OCD. But I am moving, and to acknowledge that is a big step.

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

Fear of Thoughts Getting Stuck The Challenge of Reading OCD Self Help Books

I had several responses to my review of J.J. Keeler's I Hardly Ever Wash My Hands: The Other Side of OCD, expressing fears that reading the book would give them ideas or cause anxiety.  I've been mulling this over, because it's a challenge to respond.

The simplest answer is that I don't know if J.J. Keeler's account of her OCD, and the specific things she worries about, will "stick" in your mind or create new OCD obsessions.

This is the nature of OCD that one person's trigger can seem completely harmless to someone else with a different form OCD; it's not only those without OCD who think that a particular obsession is incomprehensible.  There is a tendency to assume that other people's obsessions are easier to bear.  Conversely, if we suspect that a person's obsessions might be similar to ours, then there can be a desire to quarantine them, and not get anywhere near, as if the fears were contagious.  Or we are afraid of adding a whole new category of obsessing, and again, stay away.

This is OCD's mode of operation, to convince you that you can avoid the contagion of life, if you just screen out all things that might set you off, and enlist those around you to help in this task.   I know this from the inside.  Public health campaigns to raise awareness about various illnesses seemed designed by very cruel folks to torment me.  I was already highly aware of things that could go wrong, and I didn't want to know of any additional ways to monitor and worry about.  When I was a kid there was no internet but there were posters on the bus, public service ads on tv, special episodes of programs where someone had a disease, and magazine articles.  Women's magazines were the worst, and my mood would plummet if I was in a waiting room, reading one(which I picked up because I was anxious to be in the waiting room to begin with).

In college I was doing fairly well for awhile, avoiding obsessing about moles, until a classmate opened up his datebook, and I could see he'd written in an appointment for a mole removal.  I couldn't have predicted this.  Now, it might seem that you could at least keep yourself safe by avoiding what seems obvious, like Keeler's book or other OCD self-help books, or my blog, or the OCD Yahoo Group, or OCD support groups, but what is your definition of safe?  Avoiding all possibilities of help is not safety.  OCD would have you believe that it is possible to maintain complete quarantine, but triggers are part of life.

The irony is that when I was in an anxiety spike, I would then search out articles about whatever symptom was catching my attention, in order to reassure myself that I didn't have something serious.  There would be an initial calming effect if my symptoms didn't match, but then as I'd keep reading, I'd find something that again put doubt into my mind, or introduced an even more scary possibility.

I am not minimizing the abject fear of being seized by an OCD obsession.  I've been there.
But getting help for OCD is where the true hope of living beyond your obsessions resides.  OCD wants to maintain the status quo.  Don't get help.  Don't learn about how other people have coped.  Don't risk new pain.  

If you can't read a self-help book or OCD memoir because it's too terrifying, then this is a signal to find an exposure therapist, or a self-help group, where other people can help you.  I understand the irony in this.  I was once incredibly shy and my therapist suggested group therapy, and I was appalled.  How could I go to a group for help if I was terrified of groups??  But eventually, I realized that I didn't want to go on the way I was going:  the cost of my fear was too much, I was missing my life.

Keeler, in the preface to her book, writes of having severe fears of harming someone while at Disneyland, and self-loathing for what kind of person she must be, when a toddler ran over and hugged her leg.

It felt like she was telling me I wasn't what I feared.

I have no idea who this toddler was and I never saw her again.

But she saved part of me that day.  

Hopefully, this book can save part of someone else. 

 

 

The Purpose of Therapy for OCD vs the Goal of Therapy for OCD

I remembered something the leader of my OCD support group said, "The goal of treatment is to live with uncertainty. The purpose of treatment is to reclaim your life." Sometimes in the short term all I can see is the goal of Exposure Therapy, which is to tolerate uncertainty until the anxiety recedes, or to use the fancy word, until you "habituate" to the anxiety. And often I read comments on the OCD Support Group that reflect a fear that the goal of Exposure Therapy is to suffer, "learn to live with the anxiety" or give up the possibility of any peace.

It helped me to connect the pain of doing Exposures with the purpose of doing them. My therapist didn't ask me to do Exposures just for the sake of doing them, or because it was "correct treatment"--he asked me to do them so I could reclaim my life. The first time I met with him, he listened to my history of having OCD, and said that OCD was a disrespecter of my person. I was struck by this. Much of what is important to me was lost inside the OCD. Connecting with what I value, love, am passionate about, gives me motivation to do my Exposures. I love making art, and this often gives me the fuel to defy the OCD pull toward compulsing, and therefore losing many hours in my day to rituals.

Jeff Bell, IOCDF Spokesman, in his new book When in Doubt, Make Belief: An OCD-Inspired Approach to Living with Uncertainty, argues that human beings are motivated by what they value, by making a difference, and doing things for the greater good:

As seen through the distorted lens of unhealthy doubt, "good"
choices are those that reduce our anxiety, while "bad" choices are
those that increase our fear and introduce uncertainty.

Some of the choices that I want to make, cause me anxiety, and my OCD tendency would be to label them bad, and this crashes directly into an essential part of my soul that knows I want to make these choices, that there are things I want in this life, things I desire to accomplish and experience. With OCD it's hard to inhabit your own life. When I think about all I've lost to compulsions, I feel a deep grief, but every Exposure I do allows me to move back into my own life.

What are some good choices that you've made that *increased* your anxiety, but which you chose anyway, because they were in the service of something important to you?

Related:
Jeff Bell's Memoir Rewind, Replay, Repeat
What do you want your life to be about? Action and Commitment Therapy for OCD

Review the Young Adult Novel about OCD Zelah Green One More Little Problem

Vanessa Curtis's Zelah Green: One More Little Problem, is the next in this series about a teenage girl with OCD. The review copy came in the mail in the midst of my back going out, and I spent an afternoon in bed reading, which reminded me of much of my adolescence. Curtis has a good grasp of how stress can make rituals worse, and the double-edged sword of getting immediate relief of anxiety by doing the rituals, but the ultimate pain caused when they interfere with important things like friendship, love and family. I was moved by the description of Zelah holding her father's time for the first time since she was twelve, and how his skin felt.

Zelah's therapist, Stella, is concerned that Zelah is trying to take control of all the out of control things in her life during her summer "off"(which is anything but off from her anxieties), including her father being out of work, Caro from her time at Forest Hill showing up on the doorstep, and the most stable adult in her life, Heather, being out of the the country.

"Hmm," said Stella. "The thing is, Zelah, that none of the things happening in your house should really be your responsibility at all. I am not surprised your rituals are getting worse."

But for Zelah, calling her therapist if things get overwhelming seems alien. There's something about being that age, and just assuming that of course it's your responsibility, and the OCD compounding this by offering a glimpse of control, an illusion that if you do the rituals, the anxiety and fear will go away. Fortunately, Zelah also has friends, who help her make connections to both herself and to adults who can help.

Review of the first novel in the series:

Zelah Green: Who Says I'm a Freak

VH1s 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.

Exhaustion and OCD

I went through several hundred possible images to start this post off. My frustration with myself is mammoth right now, since the part of the point of this blog is to do it as an exposure, and not do it compulsively "perfectly." But I am regrouping now, and starting this post without an image, even though there's still 3 or 4 pages of images that I left midstream, and the temptation to look through the rest to finish it and feel done is big. Of course, I probably wouldn't feel done. I'd probably go look at more images on a different site.

The irony here--and OCD seems to bring lots of irony with it--is that I wanted to write about exhaustion. . .this is progress to just start writing, before the point of complete exhaustion. Jon Grayson says something in his book about sometimes someone with OCD stops ritualizing because they are tired, completely drained, exhausted totally. We haven't met the demands of the OCD yet, but we stop because we don't have the energy to continue.

There's a small window of opportunity at this point to wedge a bit of myself back into my mind and heart. Often I will just pick up where I left off at a later time, but sometimes I have a moment of understanding the futility of satisfying the OCD. No amount ritualizing is going to completely satisfy the OCD. It's like the games of jump rope I played as a kid--we'd all shout out rules, arbitrary, goofy, and the favorite one was making the rule of "no more rules."

It feels imperative when I'm in the OC anxiety to do whatever it says, but I've survived doing my ritualizing inadequately, and even if I met all the requirements, OCD would escalate it to the next level.

Google Doesnt Have the Answer for Every OCD Fear

This photo is called Uncertainty by Rieke Photography.  From the time I had access, over 20 years ago, I was searching on the internet for answers to my uncertainty.  I know the feeling of the keys under my fingers, the gentle give of each key when I depress it, the hope that I will get THE answer for my fears.

For a long time, I was glad I had dial-up because at least I was thwarted in compulsive web searching at home, even though I still had it at work.  The fact that I have high-speed internet at home now, and do not spend all my time searching, is quite amazing to me.  

In the thick of my OCD, before I got any treatment, I couldn't imagine stopping my searches.  If I had a health symptom, I searched for answers.  If I was trying to figure out an unanswerable question, I searched for answers.  I remember when Google first appeared.  I was a librarian, and word spread fast that there was this new search engine with a magical algorithm that worked exceedingly well.

But even Google couldn't solve my OCD, because the reassurance I was seeking was a mythical oasis that vanished as soon as I got close.  I will grant though that it was through Google that I found the International OCD Foundation.  I joined, and started receiving their newsletter.  The irony is that I subscribed to the newsletter for 5 years, all the while compulsively searching about OCD, instead of seeking treatment.

Eventually, when I reached my lowest point in 2006, I finally put it together that Exposure Therapy might work for my mental obsessions and health anxiety, and found an Exposure Therapist.

Part of my Exposure Therapy involved stopping a search before I felt "done" and staying with the wave of anxiety until it ebbed.  There are still days when I am feeling stressed, and search Google as a way to dull the anxiety, but it is not my default position, hands poised on the keyboard.