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. 

 

 

Intrusive Thoughts and Harming Fears: A Review of I Hardly Ever Wash my Hands: The Other Side of OCD by J.J. Keeler

TLC Book Tours contacted me about reviewing J.J. Keeler's I Hardly Ever Wash My Hands: The Other Side of OCD, and I was intrigued by the title because my OCD doesn't manifest in handwashing rituals, and this is the short-cut metaphor for OCD much of the time.  After reading the book, I felt like I'd found an OCD-Soul-Sister and although I am never glad that someone else has OCD, and I am glad when they can write about it in an articulate and insightful way.  

I had to laugh when J.J. Keeler describes how her twin sister had hypochondria with fear of many diseases(a type of OCD I am very familiar with), but the author had only "had" one disease: AIDS.  In the irony of OCD, in elementary school she is triggered into worrying about AIDS when her parents mention a blood transfusion she had, but what her OCD latches onto is the risk of "dirty needles" which in her young mind means thumbtacks, staples, pine needles, with dirt on them.  Humor is a major component of Keeler's account of OCD, grabbing the edge of ridiculousness about OCD fears and pulling the whole thing apart, so that the sufferer can catch a glimpse of OCD's game of generating endless scenarios and holding life hostage.  

The second chapter, The Bomb in my Teddy Bear, is a marvel of encapsulating the experience of morphing OCD thoughts.  When she was 8 years old, neighbor gives her a teddy bear at a yard sale, and a chain of fears links itself around her.  She started getting a weird feeling about the bear, and wondered why a relative stranger would give her a teddy bear for free.  Then it came to her, "The reason was obvious.  There was a bomb in the teddy bear."  Keeler agonized over how to dispose of the bear, without harming anyone else, and then when it didn't explode, wondered if the neighbor would come back to finish the job.  Her rituals to keep the anxiety from exploding were a constant stream of "figuring out" and "analyzing" combined with tin cans at the door to let her know if there was an intruder, and plotting how she could take the bear on one of her father's fishing trips and throw the bomb overboard.

Eventually, OCD moves onto other topics in Keeler's life, but the same corrosive fear and desperate maneuvers to make the fear go away.  In addition to fears about AIDS(and calling the testing center before her test was even received, to check, check, check), she feared causing harm to others after being deluged with intrusive thoughts.  If you suffer from this very painful form of OCD, please read this book.  Keeler has known the despair that made her consider suicide, because she didn't want to harm anyone and yet these images would pop into her head, and she has survived, and now thrives.  

The most difficult part of reviewing I Hardly Ever Wash My Hands: The Other Side of OCD, is that I want to quote everything, but it would be better for my readers to go find a copy of this book and read it for themselves.  

Read J.J.Keeler's Introduction to Harming Obsessions on her blog.  

Find J.J. Keeler on Twitter

Related Post:

Fear of Thoughts Getting Stuck: The Challenge of Self Help Books for OCD

http://tlcbooktours.com/

Interview with Andrea Kayne Kaufman, Author of Oxford Messed Up: Part 2

Part 2 of my interview with Andrea Kayne Kaufman, author of Oxford Messed Up.
Check out Part 1 Here.

ExpWoman:  The image of Henry inviting Gloria into the tub 
of cold water to illustrate how over time one can habituate 
to the chill, just as exposures can habituate 
you to OCD fears, is very powerful.  

The tub is central as image in this novel--
did the image come first, 
or evolve as you explored the characters?

Andrea:  So glad you asked about the tub. I remember when we were learning about exposure response prevention, the doctors described it as stepping into cold water. If you pull your foot out right away, you will never get used to it. You will never habituate.  But if you stay, it will gradually become bearable.  I also really liked the tub/water as a metaphor for rebirth and renewal. The tub is the place of Gloria and Henry's greatest suffering as individuals and a couple. It also becomes the place of their reckoning, their paradigm shifts, and ultimately their redemption. When the novel first came to me, i saw Gloria scrubbing a claw foot tub with bare hands. I also saw them striking their deal in the tub. And i saw them making love in the tub. Although when i actually wrote that scene i realized it would be very hard to have intercourse for the first time in the tub— thus, it was next to the tub on the loo floor.

ExpWoman:   
Henry's addiction has many parallels to Gloria's OCD.  
How does the addictions recovery model resonate
with exposure therapy for you?  
Have you, or do you know people, who have experienced either of these?

Andrea:  Very true.  In addition to having experience with ocd, there is also experience in my extended family with drug addiction and recovery.  When the ocd in our family got out of hand— total conflagration as the doctors said— it required more and more compulsions, reminding me of a drug addict spiraling out of control, needing more and more drugs to get high.  I also think recovery models closely resemble the cbt paradigm.  Also, one never is totally rid of ocd, it can remerge and tempt you at different points in your life just like addiction.

ExpWoman:  
Your theme of "choosing happiness" resonated with me.  
When I  stopped writing poetry, and started making art, 
I did feel guilty at first for doing something 
that made me happy, making art that expressed joy & hope.  
Is there a particular point in your life that

you "chose happiness" and if so, can you tell us a little about it.

Andrea:  This is a really important theme for me. The courage to write the novel and put it in the world was really me choosing happiness for myself. I am one of those "people pleasers' who's renounced my own needs in favor of other people's needs.  It took me a long time to learn that happiness was something you have to affirmatively choose and not just wait for other people to give you.  Moreover, it took me a long time to learn that i was worthy of happiness and love.  I also experienced some tragic losses as a child and it took me so long to stop defining myself by the cloak of tragedy— which felt familiar and comfortable. I was worried that people might not like me as much if i came out of the closet and they knew i was happy.

ExpWoman:  
I remember being surprised when Oliver is revealed
as Gloria's OCD"voice" rather than an actual boyfriend
in the first pages of the novel, and impressed 
with how this gave a sense of how integral OCD can become
to one's person.  How did Oliver come to you as a character?  
What were the challenges in creating him?

Andrea:  As we were going through ocd in our family, it became clear that the ocd was a voice in the head demanding certain things. It was like a hostage takeover. The doctor encouraged that it be externalized and named. This helped distinguish what the ocd wanted from what the actual person wanted. As parents, it also made it much easier for us to participate in erp and cbt because we knew we were standing up to the ocd and not our child.  I also really felt like there was a dilemma about whom to listen to--  the ocd voice or us.  Thus the love triangle concept was born. Oliver was a challenging but wonderful character to write because i really do view it as a love triangle. And Oliver is so different than Henry. I have been approached by a major hollywood studio about doing a movie version and talking about how to portray Oliver in a film has been a lot more challenging but there are so many intriguing possibilities.

Interview with Andrea Kayne Kaufman, Author of Oxford Messed Up: Part 1

Andrea Kayne Kaufman, author of Oxford Messed Up, graciously agreed to answer some questions about her novel, which deals with OCD.

ExpWoman:  "What if" questions are a hallmark of OCD, 
usually with dire answers.  Your novel seems to be a 
"What if" with an optimistic answer.
How did the scenario of Henry and Gloria meeting 
come about?  As a "what if" of an extraordinary kind 
or did one of the characters come first?

Andrea: Gloria came to me when we were struggling with ocd with one of our children. There were some people close to us who doubted the efficacy of the medication and cbt/erp therapy we were going to embark on. They told us our child would be fine. Was so smart. Would go to yale and find his niche eventually.  That wasn't good enough for us as we watched needless suffering. So i think that is why i created gloria.  The "perfect" yale graduate, living a miserable existence.

After our child got better (very quickly by the way), Gloria seemed to be asking for her happy ending too.  I created Henry because our child's therapist once said that what seems like the worst thing possible may actually be the best thing possible. So that is why i gave Henry his condition, the worst germs possible.


ExpWoman:   What led you to have Henry be the agent of the 
Exposure Therapy(ERP) rather than a therapist?

Andrea: Henry or any lay person is not an ideal person to administer erp.  But given Gloria's parents undermining of her early erp and history of hospitalization, she has been closed off to full treatment for years. Henry is able to open her up to the process again. His efforts are supervised by his sister (unethically perhaps) and i tried to show in the chapter with the dog that Gloria realizes Henry needs to be replaced by a real professional.  In order for the erp to be successful, you need patient buy-in and Henry is able achieve buy-in.

ExpWoman:  Some of my readers, 
most who struggle with OCD, wondered at the
speed of Gloria's recovery from her contamination OCD 
after she begins doing exposures with Henry.  
I know that my progress for health anxiety, 
intrusive thoughts & perfectionism has taken longer.  

What led you to a more rapid progression?

Andrea: Our family experience was that once we started medication and cbt/erp rigorously and consistently, we saw dramatic reduction in compulsions within 3 1/2 months. That doesn't mean the ocd has gone away. It's a life long struggle that can be triggered with all sorts of life events, hormones, stress etc. Although, it can rear its head, it has never been as strong because we have the tools.  The novel was vetted by three experts and has been hailed by the ocd community. There may be some poetic license but i really wanted to show the true torture of ocd from the inside out and how cbt can be very effective. Some people think that it is archaic and cruel, denying someone the few things that provide comfort. But cbt is the only therapy proven to really work and if done well, it can work quickly.

ExpWoman:  Which books on OCD were most helpful to you in writing this novel?

Andrea: 

The Boy Who Couldn't Stop Washing By Judith Rapoport

Ocd In Children And Adolescents By Johns S. March And Karen Mulle

Freeing Your Child From Obsessive Compulsive Disorder By Tamar E. Chansky

What Do Do When Your Child Has Obsessive-compulsive Disorder By Aureen Pinto Wagner

Talking Back To Ocd By John S. March

ExpWoman:   Did someone in particular inspire you 

to take on the subject of  dealing with OCD?

Andrea:  As I said before, we experienced very bad ocd with one of our children whose courage and tenacity really inspired me. Also, his psychologist Amanda Holly (whose video is on my website) is my total hero. She is our "ocd whisperer" and really saved a life and our family. She is one of the experts who consulted on the book.

ExpWoman:  I grew up as the daughter of an English

professor, and then did an MFA in creative writing. 

Being in the academic world had its own set of challenges 

when suffering from OCD.  What insight would you offer to 

those readers who are currently in academia and struggling?

Andrea:  Academia can definitely be daunting for anyone and especially for those who suffer from anxiety disorders like ocd. Moreover, whether you are a student or faculty member, the work in school can be isolating which can lead to stoicism, keeping all the struggles inside until they build and build. It is so important to have good mentors and advisors that you can share with— not just academics but also social/emotional struggles. It is also important to know that transitions to college or going through tenure can trigger internal stress and anxiety disorders. It is good to be prepared and prophylactic.  Finally, the world of academia emphasizes grades, publishing, comparing, competing. This dynamic is not healthy for the person who suffers from perfectionism whether in ocd form or eating disorder or something else. It is so important to master the "good enough" standard and learn to be gentle with ourselves.

ExpWoman:  I will post Part 2 of the interview with Andrea Kayne Kaufman next week.  For Andrea's introduction to Oxford Messed Up, check out her video.

Finding Hope in the Midst of Anxiety and Obsessing: It IS Possible

Hope Mosaic by Exposure Woman

Awhile back, one of my readers asked if I would post some of my art.  This is an even bigger exposure than making a video about my OCD for my last post!  As I wrote in Your one wild and precious life, my love of art gives me strength for facing my OCD.  The joy I feel when making art is something that allowed me a glimmer of hope that my life could be my own, rather than in the thrall of OCD.

Hope means looking forward to something, and some suggest that it is related to hop, to leaping in expectation.

The first time I read an article by Jonathan Grayson about obsessing about obsessing, I felt a leap of hope that someone understood what I was experiencing, the angst that I would do something to trigger my obsessing, and trying to figure out if I really was obsessing.  Grayson believed that exposure therapy could work for obsessions of the mind.

Meeting my exposure therapist, Leonard, for the first time also made my heart leap with hope.  He was a worthy foe of my OCD.

None of these things meant I was certain I'd get better or that someone could help me or that I could do exposures and survive them.  OCD had been demanding I be certain for quite some time--certain I had OCD, certain I had the right therapist, certain I was doing my exposures correctly--and this eroded my hope in the guise of helping me.   If your OCD is anything like mine it may sound like this:

You don't have enough hope.  You'll never get better.  What are the signs of hope in your life?  Figure that out.  Do a search on the effects of hope on dealing with mental illness.   What is wrong with you? Why do you feel despair?  You'll never get better.  

Whoever you are, if you suffer with anxiety and the exhaustion of worries chasing each other, remember that there is hope.  It is possible to get better.  It is possible to claim your one wild and precious life.  You are not broken, irredeemable, beyond mending or repair or healing.  If you don't have hope, you can borrow some of mine.


H is for Hope

Living with Me and My OCD: An Interview for Claire's Documentary

ClaireJaneOCD on twitter is creating a documentary about the experience of having OCD, and invited me to contribute a video.  Claire and Jane are twins in the UK, who just completed running a marathon in order to bring awareness about OCD.  This is my first time recording myself!  And definitely an exposure to make it, but hopefully will be helpful to other people who struggle with OCD.

Review of Oxford Messed Up by Andrea Kayne Kaufman: Facing OCD

[Note: In celebration of love, life and hope, Andrea Kayne Kaufman will be offering the Ebook edition for $ .99 on Amazon from May Day thru Cinco de Mayo - May 1-5.]


When Grant Place Press contacted me about reviewing Oxford Messed Up by Andrea Kayne Kaufman, little did I realize the connections I would find with my own life.  The protagonist, Gloria Zimmerman, is traveling to Oxford to study feminist poets, and struggles with OCD.

I have a degree focused on feminist poets.  Reading poems written by these women, and writing my own poems gave me strength to deal with depression, OCD and other pain.   I was a very serious young woman, who didn't know she had OCD, but knew that I was often scared about symptoms in my body, and trying to be perfect.  Gloria knows she has OCD, but attempts to keep herself together with rituals, Klonopin, and Van Morrison's music.

Van Morrison's music is a source of strength to both Gloria, and her "loo-mate" Henry Young(the other protagonist who has had many traumas in his life).   As a girl, I  remember sitting on the floor going through my parents record collection, trying to understand what a Moondance was, and mesmerized by the album.

I was intrigued that one of the recommendations on the back of the book came from Susan Richman from OCD Chicago, a chapter of the International OCD Foundation.  Oxford Messed Up does indeed explore Exposure and Response Prevention Therapy(ERP), the standard for treating OCD, and is the only novel for the adult market that I've ever come across that does.

Henry is the catalyst for Gloria's ERP, and this shows the importance of rapport for willingness to do Exposures.  If I hadn't trusted my ERP therapist, I wouldn't have done any of the Exposures he suggested.  I believe that family and friends are often on the frontlines of working on Exposures with the ones they love who have OCD, and that self-help has been very important for many sufferers, especially Jonathan Grayson's book Freedom from OCD, and his model of GOAL support groups.

At the same time, though, I was ambivalent about Henry's quick study of ERP, and how unrealistic this might be.  I was able to suspend disbelief because I remembered reading somewhere that ERP, even incompletely done, can be better than years and years of talk therapy. I only wish more therapists were  quick as Henry--like the 6 or 8 of them I saw before I found Leonard, who actually specializes in OCD and was expert in Exposure Therapy, rather than asking me to simply avoid my triggers or use logic to make it all go away.  I would imagine a novelist's dilemma would be how to portray a series of ERP sessions with a therapist, in a way that would make good fiction.  

Gloria has contamination OCD, which I don't have, and which gave me a brief flash of disappointment, because this is the stereotype of people who have Obsessive Compulsive Disorder.   But she also has perfectionism, a mandate to be a "Superstar,"  which I identify with, and I liked that Kaufman showed how perfectionism can underlay everything, and that this may be slower to respond than other aspects of OCD.  If patterns have been in place for a lifetime, through family culture, personal history, combined with genetic heritage, that simply habituating to the "dirty world" isn't enough, and that compassion, love, understanding and hope are crucial to regaining a life that has been ordered by taking as few risks as possible, and trying to earn the love of others.  

I recommend Oxford Messed Up for it's improvisational dialogue both internal and external, for an inside look at the OCD thought process while facing fears, for the importance of hope, and of "fatalistic optimism"(as the characters describe the music of Van Morrison).

In celebration of love, life and hope, Andrea Kayne Kaufman will be offering the Ebook edition for $ .99 on Amazon from May Day thru Cinco de Mayo - May 1-5.