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:

Fear of Being a Bad Patient: Health Anxiety and Self-Worth

Problem for me is I also have social anxiety. Dealing with doctors is just as anxiety provoking as worrying about illness. My symptoms and test results seem just worrying enough to warrant monitoring the situation but I'm constantly worried the doctor will think I'm just being a hypochondriac.

I actually looked through some books on hypocondria, but they all focused on worrying about something that has been ruled out. Which isn't the case for me. I'm working on establishing a format of when to call a doctor, which symptoms or tests should be followed up on and which need not. I'm finding this helps me to let it all go and enjoy things more, particularly when I am having low symptom period. I've got a ways to go, though. :)

I've been thinking about this comment by MinM on my post Hypochondria and Health Anxiety OCD.  The social anxiety of dealing with doctors complicates my health anxiety, as well as cultural stereotypes of women as oversensitive, and my perfectionism which demands I pre-diagnose myself and get it right before I even go to the doctor.

I spent many years at my old job listening to medical residents do their rounds, and anything to do with the mind and emotions and human complications was a struggle for them in the midst of all the technical, diagnostic work they were doing.  There was a staff psychologist who would sit in at times, and I was glad to have her there providing some perspective.  Also, some residents were much more able to deal with anxious patients than others.

OCD is still an enigma to many people, professional or not, and health fears are often labeled hypochondria, even though health anxiety OCD has a significant component of dealing with uncertainty and rituals to try and undo the fear, such as repeated calls to doctors, web searching symptoms and monitoring and checking body symptoms in a similar way to those who check locks, stove burners and light switches.

My latest challenge was a physical in October with my family doctor, who was concerned about my low iron levels and said since I was "close enough to 50" that she was going to refer me for a colonoscopy.  Getting older adds another layer to health anxiety.  I'm still a few years away from 50 and I felt a surge of panic that I was going to choose the wrong thing, do the wrong thing.

Ironically, my doctor was not "certain" about this.  She even went and talked to a colleague to see if she sounded "crazy."  Here was her thought process: My iron levels could be due to being female, but she's seen too many cases of patients in their 40's who turned out to have colon cancer, and while she doubts that there is something seriously wrong with me, she wanted to play it safe, and have me consult with a gastroenterologist.

Does this sound omnipotent or certain?  No.  Do I deal well with uncertainty?  Well. . .I hadn't seen Leonard, my exposure therapist, in 5 months, so I made an appointment to sort this out with him.  I didn't look up colonoscopies in the meantime, which is huge for me.  Leonard made me laugh by saying the sedative is fabulous with a colonoscopy. . .he'd also heard that the guidelines might be changed to start a screening colonoscopy at 40 rather than 50.  

For him, it didn't trigger a big emergency because his self-worth was not at stake, as opposed to my perfectionism, which decreed I'd better get this right or prove my defectiveness.  Leonard asked if I really believed that there is a way for someone to prove I'm defective as a person by looking at my colon.  I made the appointment with the gastroenterologist and saw him a couple weeks ago.  He basically said the same thing as my family doctor, about wanting to err on the side of caution.  I scheduled the colonoscopy for January.  

If you are a reader tempted to write me a treatise about the dangers of overtesting, and other sociological factors about suburban US medicine, please be assured I've already thought about all of this, and I've taken my best guess.  Does this scare me?  Yes, it does, because I'd prefer to make a perfect omniscient choice, but ritualizing to give myself the illusion of being able to make a perfect choice has stolen many years from me already.

Some of what I've learned over the years of dealing with my OCD with Exposure Therapy:

• It's important for me to trust and respect my doctors, and be able to honestly say when I'm struggling with the OCD.  The anxiety of figuring out how to indirectly get my questions answered was exhausting when dealing with doctors who had little patience for anxiety.

• Even people without OCD have a difficult time gauging when to go to the doctor.  There will be uncertainty.   I may be wrong.  This doesn't say anything about me as a person.

• Self-Monitoring and vigilance will not magically protect me from illness and disease, as evidenced in my experiences: Skin Cancer Anxiety: Fear, Vigilance and All or Nothing Thinking and Skin Checks and OCD: Never Enough.

Relationship OCD: Two Hard Things at Once

The post on Exposing OCD with the most comments and reader resonance is Relationship OCD and Fear of Choosing the Wrong Person or Gender.  I wrote it over 2 years ago, and it still gets comments.  There is a thread of pain throughout the comments, which I find sobering.  

I am not a professional.  I am not a therapist.  I am someone sharing my story and my experience.  If there's any lesson, it's not that my readers need to marry the one they are with, or not marry the one they are with, or find another gender, but that OCD latches onto what is important to us, such as love or connection, or a particular person, or imagined ideal person.  

Relationship struggles are hard enough without OCD, and there's nothing magical about OCD treatment that will make relationships struggle-free, but it can give you the chance to choose to live your life, and choose who you love.  

OCD is offering a false promise that you can banish all fears and doubts, all unwanted thoughts, all gnawing anxiety, if you just come up with the right ritual of analysis, research, checking, double checking, monitoring feelings or repeating certain phrases.  

When I married my husband 20 years ago, I could've made the wrong choice.  Many marriages end in divorce.  The brave part was making a choice, without having absolute omniscient knowledge of the future, which of course no human gets.   Getting married didn't make my OCD go away, but I did have the victory of choosing what I wanted(or rather, my best guess of what I wanted).    

Professional help and OCD support groups are about making an investment in your future, an investment in your life, in facing the disorder that barrages you with thoughts that go against the core of your being, and yet the more you wrestle with them, the more they cling.

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.