Tag Archives: ERP

Tuesday Q&A: Kevin Putman

Standard
KevinandWife

Kevin and his wife, Tana

Tuesday, Tuesday, Tuesday! Welcome Kevin Putman, one of last year’s recipients of the IOCDF Hero Award—and with good reason. He’s done a tremendous amount of awareness building in his small community in Michigan and has shared his unique idea for OCD advocacy with the larger community as well: Ping Pong 4 OCD. Maybe you’ve played ping pong at one of the OCD Conferences and met Kevin yourself. He’s funny, approachable, and tireless in his efforts to get people to the right treatment sooner.

Last summer at the International OCD Conference you were presented with the IOCDF Hero Award—and you were very deserving! Tell us what you’d been doing in advocacy to get you on the hero radar.

It was unexpected. I see so many people doing so many big things and I always feel like I’m not big time, or doing big things. It just doesn’t seem like it to me, but I guess it seems like it to someone. There are three main things that I do. One is an OCD support group here in Petoskey, Michigan, where I live, and that’s top on the list for sure. That’s really giving back and helping out. We do that once a month. I really enjoy doing that. The other thing that I have going on — I like to say “we” because it’s the community here — is RUN OCD, which is the nonprofit organization, and the big event is Ping Pong 4 OCD. We do those events here in Michigan and we do them in conjunction with the International OCD Foundation. We’ve kind of branched out and some other people have taken that torch and run with it in their community. I also work with Christian Benway. He’s brought in the disc golf for OCD side of RUN OCD.

You have OCD yourself. Can you share some of your OCD story with us? When were you diagnosed, and how did you realize something was wrong—and that it could be OCD?

My formal diagnosis didn’t come until I was married with kids. Actually, my wife was the one who diagnosed me. I self-diagnosed, but I probably didn’t get an official diagnosis until I was almost 30. Looking back on it, I know that I have had OCD since forever. I can’t think of a time that I didn’t. But in college I was taking a psychology class, Psych 101. We were talking about anxiety disorders, and one day the topic happened to be OCD. I’m just some college kid taking notes, but some things my professor was saying were relating so much to me it was crazy. It was like someone was punching me in the stomach every time he said, “Someone with OCD does this, and they do this.” It was real stuff. At that point I still wasn’t convinced; I thought, “Oh, this is just a coincidence.” But from there I started to pay attention more, and once I got married and started living with my wife she started noticing a lot of stuff—the checking, the rechecking, and a lot of other things I was doing that revolved around OCD.

Once you knew it was OCD how did you go about treating it?

Well, at first, I went to a counselor locally. I went to a handful of counselors here in this town, and the unfortunate part was that there wasn’t really anyone who knew what to do, so I wasn’t treated how I needed to be treated for a long time. I had a handful of counselors where I would go in and they would just accommodate me and reassure me— it was almost like my weekly reassurance session. I’d save up all this stuff I was anxious about and I would say, “Here’s what’s going on” and we’d talk about how things are going to be all right, it’s gonna be okay, the total opposite of what we needed to be doing, which was to build that anxiety up. So it wasn’t really until I got into the Houston OCD program that I started hitting hard and started working on ERP. My wife is a counselor, and she had read Loving Someone With OCD, and that book talks a lot about the family accommodation piece. She had already started doing that before I went to Houston; she was not accommodating at all at home because she’d read that for her to be checking locks and checking the stove for me was not the right thing to do. That was a huge, huge benefit to have her. To have your wife be a counselor is a lucky thing.

So do you live in a relatively small town? Is that why there weren’t that many people who knew about it?

Right, exactly. I live in Petoskey, Michigan, which is a super small resort community, and anyone who really specializes in OCD would be in the Detroit or Lansing area, which is like three hours away from here. Our counselors up here have to be so broad; they can’t just focus on OCD because they wouldn’t have enough clientele. They have to do the full gamut, and that means they may or may not be up on what the correct practices are. Now that I have gone to the conferences and gone to the Houston OCD program and I’m running this OCD support group I’ve made myself available in the community as an OCD resource. So whenever I talk to anybody, whenever anyone calls me, and they tell me that they’re in counseling, I always ask, “Have you ever heard of ERP?” I would say 99.99 percent of the time they say no, and they’ve been treated by a counselor for a while. It’s a little bit scary to me, still, but not everybody knows it. I’ve been trying to bring that in, too, when I talk to people. I just met with someone the other day, and they were sharing with me, and they had never heard of ERP. They’re a big research type of person, so I said, “Google it, and if you’re not doing that with your counselor, you need to find someone else.”

How did you go from that to the Houston program? Did you find out about it on your own, like doing Internet research?

My wife found it. I have “just right” OCD; my OCD revolves around checking, and I do a lot of symmetry and over-responsibility. All of my symptoms crashed down on me all at once. I didn’t want to move one way because it didn’t feel right, or I’d have to move back the other way. I didn’t want to turn anything on because I’d have to turn it off. I was sinking into this deep, deep depression, and I was suicidal. I was not functioning. I was on the couch, burying myself underneath a sleeping bag, and I was making a plan to kill myself. My wife was like, “Okay, we’ve got to do something.” She called Community Mental Health here in town and they said, “O-C-what?” It was like, “Are you kidding me?” At first I was going to go out to McLean in Boston. That was the original plan, but they were full and couldn’t take me. This was on a Thursday or Friday, and my wife said, “No, he’s got to get in now.” She called the Houston program and they said, “All right, we’ll see you Monday morning,” and we went.

Did you have kids at this point?

I did. My kids at the time were three and six.

You started a nonprofit called RUN OCD. First of all, explain the name for some of my younger readers. 

[Laughs.] Isn’t that funny? We were looking for a cool T-shirt to make, so it wasn’t supposed to be what it happened to be. I’m a big hip-hop guy from back in the day, so we looked at the logo for RUN DMC, the rap group from the 1980s, early ’90s. Their logo looks exactly the same except it says RUN DMC and ours is RUN OCD. So at first it was just a play on words and a T-shirt, and then when Ping Pong for OCD started happening and Christian and I were both speaking and we were doing support groups and events, we realized maybe this is bigger than we thought it was going to be. People will always ask, “What does it mean?” I wish there was a straight answer but there’s not. It’s kind of what you want it to be. A lot of the time we say it’s to run your own OCD or to take charge, don’t let OCD run you, run your own OCD. It’s neat to see who gets the RUN DMC reference and who doesn’t. I like that it’s ambiguous because it makes people ask questions. You walk down the street with a RUN OCD T-shirt on and someone’s like, “What do you got going on there?” And it opens the door for conversation and for sharing. It’s inevitable—if you talk with someone they’ll be like, “Oh my gosh, my cousin, my brother, myself” has OCD, and it opens that door. I have met so many people and built so many relationships just because I was walking down the street wearing the shirt or the hat. I’ve considered changing the name, I’ve considered adding a tag line, I’ve considered all these things, but I really like that people have to ask because then the conversation can start.KevinPingPong

Let’s talk about ping pong. I love it, but what I like most about it is seeing how many times my partner and I can go back and forth, so I wouldn’t win any tournaments. What gave you the idea to introduce ping pong to the OCD conference? 

We’d done a couple of ping pong for OCD events in Michigan, and they were fun. And I’d been going to the conferences and it seemed like you’d get into the evenings of the conferences and there was not a ton to do. They had some evening activities, but a lot of times the conferences are in these gigantic towns and you don’t necessarily want to venture out into San Diego or Chicago—of course there’s cool stuff to do, but you’re meeting people and you just end up staying right in the conference hotel and want to spend time with these folks. So I thought, “Man, we have all these big conference rooms that we use during the day but we don’t use in the evenings, so wouldn’t it be neat to just clear them out and put in some ping pong tables?” Then people can come in and they can hang out and it’s a nice networking time, a nice ice-breaking time. The kids really like it too because the conference has a bunch of kids and they can’t go out to the bars or the restaurants, really, and they’re looking for something to do in the evening. It’s something that people of all ages and all skill levels can participate in. We tried it once and people liked it and we kept doing it.

I think most of us with OCD have pet peeves about how misunderstood the disorder is and how the misconceptions are perpetuated. How do you feel about things like someone saying, “I’m so OCD about how I organize my clothes”? 

Some people get all fired up about that kind of stuff. I know there’s a huge side of the OCD community who thinks that’s blasphemy and thinks it’s disrespectful. That bothers me none. What bothers me is people in the OCD community who are bothered by it because I think it’s silly. I think there’s so many more places that we can put time and energy into than chasing down someone who says, “Oh, I’m so OCD about organizing my groceries.” I just think it’s a null point and I don’t care one bit. I really don’t.

What would you say is your biggest OCD awareness accomplishment?

The first ever Ping Pong 4 OCD tournament we did in my hometown in 2011. It just came out of nowhere. The response from the community was super cool. Every person I talked to said yes, everywhere I went somebody donated something, gave me something. It was just really cool and the neat part about it was that the whole idea behind Ping Pong 4 OCD stemmed from starting a support group. When I was in the Houston OCD program I had found huge value in the Houston-area OCD support groups, which weren’t affiliated with the program. It was people coming from the community and all walks of life, different shapes and colors and sizes, and I thought that was so cool. My therapist talked to me at discharge about how I needed to find an OCD support group when I went home, and I said, “We don’t have one.” She said, “Well, you’re going to have to start one.” I was trying to figure out how you start an OCD support group. What, you put a sign in the door and say, “All right, OCD support group tomorrow night!” You’d be sitting in a room all by yourself. We needed an event or a gimmick, basically, to get people together to get this support group started, so we organized a ping pong tournament. We just had this small little table in the corner that had some books and some pamphlets about OCD awareness and a sign-up sheet that said, “I’m interested in attending an OCD support group.” We never announced that we were doing that; it was just ping pong all day long, but the people who needed to find that table, and the people who needed to put their names on that list, did. From that list we got the OCD support group started and we’re still doing it five years later.

If you could give just one piece of advice to someone with OCD, what would it be?

Laugh. Because it’s really funny when you think about it, the things we do. It’s just funny. And if you can use humor as your friend I think that’s a huge piece of recovery.

Advertisements

15 Things People with OCD Want You to Know

Standard

I love talking about OCD, and it’s always interesting to see how my words are used in the final product! It’s an exercise in letting go and giving control to someone else. This time my interview—as well as several others from both people with OCD and those who treat it—was worked into a list of 15 Things People with OCD Want You to Know.

What do you think? Would you have added anything? Removed anything? Expanded on anything?

Tuesday Q&A: Wendy Mueller

Standard

Wendy January 2014I don’t know what’s harder to believe, that it’s Tuesday already or that it’s December already. Here in Minnesota we’re finally getting our first inches of snow. Today’s guest, Wendy Mueller, is always eager to remind me that where she lives — Southern California — she never has to deal with snow or cold temperatures.

But Wendy’s full of useful information, too, and isn’t just adept at stating the obvious (just kidding, Wendy!). After recovering from OCD over 20 years ago, Wendy has dedicated much of her time and energy to helping others with OCD; she runs a large online support group and knows what others need to hear in order to face OCD head-on. I really have to give her credit, too — not to date Wendy, but this was before the Internet was always accessible, before you could take a photo on the bus and upload it for all of your friends to see a second later. She sought out support and stuck with it, eventually giving back to the same community that helped her so much. (But seriously, what is Prodigy?)

Let’s get Wendy’s take on it all.

You run a huge online support group called the OCD-Support List. How did you become involved with this great resource?

Twenty-eight years ago, I developed severe OCD upon the birth of my first child. For the first year and a half, I didn’t even know what was wrong with me. I hid my OCD symptoms from everyone around me, because I thought I was going crazy and I didn’t want to be put in a psychiatric hospital. Once I found out that I had OCD (after reading an article about OCD in Newsweek magazine in early 1989), I immediately started to seek out some sort of support system so that I could talk to other people who had OCD.

When I got my first computer in 1990, I started looking around the various health “bulletin boards” on the Prodigy computer network, but I was unable to find any support groups related to OCD. So I decided to start one on my own. I created a new topic for OCD and posted a message asking if there were other people suffering from OCD, and — little by little — my small online OCD group began to grow. I moderated that Prodigy group for about seven years (we eventually had about 60 members of the group), but I also joined another larger online OCD support group that was being moderated by Chris Vertullo, an OCD advocate. Her group had hundreds of members, and it was a very active support group that also included regular contributions from several OCD experts, including Dr. James Claiborn and Dr. Michael Jenike.

When Chris decided to “retire” from leading the group in 2001, I took over leadership of the group with a few hundred members. Over the years, the group has snowballed into a huge group that now has more than 5,200 members from all over the world. Dr. Claiborn still contributes daily to the group, and I keep a close eye on the messages being posted so that we always stick to the topic of OCD.

So, the shorter answer to your question is: I started up an online support group back in 1991 because I personally wanted to communicate with other people with OCD. For four years, I was part of the online group as a sufferer. However, I recovered almost completely in 1995 (thanks to taking medication and learning exposure and response prevention [ERP]), and ever since then, I have been able to encourage and give hope to others who are still struggling by telling people my own story of recovery from severe OCD and depression.

Obviously you find value in online support groups. What advantages are there to meeting online vs. meeting in person?

There are some great advantages to meeting in an online group, as opposed to an in-person group, but the first thing you need to do is make sure that you find an online group that is well-moderated by someone who regularly reviews the posted messages and makes sure that people stick to the topic of OCD. It’s also important to have a closely moderated group so that the moderator can correct any misinformation that is posted and also so that the moderator can intervene in the case of any angry or hurtful comments that might be posted. It’s important to have the group moderated by someone who is there regularly, keeping an eye on things on a daily basis. It’s also good to find a group that has contributions from OCD expert doctors/therapists, so that members are getting the best information and guidance possible regarding the proper treatment for OCD.

An online group is a terrific choice for people who have no local access to OCD treatment in their area or who cannot afford OCD treatment. Also, many people with OCD find it extremely hard to talk about their OCD with others — even with a therapist — but one can remain completely anonymous in an online group so that no one ever knows your true identity. You can even join an online group just to read the messages posted by other members; you can remain quiet and just “lurk,” without ever having to say a word. It can be extremely helpful to read the discussions going on between other members of the online group as well as the contributions from the OCD expert therapists in the group.

With an online group, there are no restrictions to the time of day that you can seek support. There are people posting and answering messages at all hours of the day — even in the wee hours of the night — so you can almost always get an understanding and helpful response from someone, no matter what time of day you post a message to the group.

You developed postpartum OCD after your first daughter was born, and like so many other mothers you were afraid to tell anyone what you were going through — you didn’t want your child taken away, or to be involuntarily committed to a psychiatric ward. Of course, those fears were unfounded, but you didn’t know that at the time. When did you finally realize you had OCD, and how did you make the connection?

I finally realized I had OCD when I came upon an article in Newsweek magazine in which Patricia Perkins (one of the original founders of the International OCD Foundation) was interviewed about her OCD and about the work of IOCDF. As soon as I started reading that article, I knew — without a doubt — that’s what I had been struggling with for the last 18 months since my daughter was born. The article described exactly the type of “crazy” things I had been doing all that time — checking door locks and stove knobs, compulsively lining things up neatly and symmetrically, counting to a “magic” number in my head whenever I did things, compulsively repeating actions over and over until it “felt right,” and worrying excessively about almost everything I did all day long. As soon as I read that article, I told my psychiatrist (who was treating me for depression) that I knew I had OCD, and that was the beginning of my road to recovery. The first thing I did was join IOCDF so that I could receive their regular newsletters, and I started attending their annual conferences, starting with the very first one in October 1993 in Minneapolis.

Once you knew you had OCD, how did you go about treating it?

At the time I finally realized that I had OCD, I was severely depressed and extremely disabled by severe OCD, depression, and anxiety. I never slept well, and I cried throughout the days, feeling hopeless and helpless about my life. At that time (1989), I believe that Prozac was the only medication that had come onto the market that was being prescribed for OCD, so I was very willing to give it a try (which I did, but was unsuccessful due to side effects I couldn’t tolerate). I also started reading any books about OCD I could get my hands on, like The Boy Who Couldn’t Stop Washing by Judith Rapoport, Getting Control: Overcoming Your Obsessions and Compulsions by Lee Baer, Stop Obsessing! by Edna Foa and Reid Wilson, and When Once Is Not Enough by Gail Steketee and Kerrin White. The more I read about OCD, the more hopeful I became that I would eventually get better.

Unfortunately, I had a difficult time finding a medication for OCD that didn’t cause initial side effects that I found intolerable. Prozac caused me to be very agitated and anxious, so I had to give up on taking it after a short while. In subsequent years, at different times I tried Anafranil, Zoloft, and Paxil, but those three medications caused me to be very disoriented and confused, so I was forced to give those up also after a short period of time.

Just when I thought I was never going to be able to tolerate any of the OCD medications, a friend with OCD told me to try Prozac in liquid form so that I could start taking it at a very tiny initial dose and very slowly increase the dose over a long period of time, which would enable me to gradually get used to the medication and hopefully avoid any bad side effects. It worked beautifully! It took me about four months to go from 1 mg/day to 60 mg/day Prozac, but once I got up to 60 mg/day and stayed at that dose for about five to six weeks, I really began to notice my OCD fading away. It felt like breaking out of prison! Once I got much better on the medication, I was then able to really dive into learning how to do ERP for my OCD. Prior to taking the Prozac, I had not been successful with ERP, because the OCD was too strong for me to fight through the anxiety. Once the medication successfully kicked in, then I started to make progress with ERP. The combination of medication and learning ERP brought me to almost complete recovery from my six years of severe OCD and depression.

Wendy and Lisa

Both of your daughters have OCD as well. How did your own experience with the disorder help you recognize the symptoms and get them through it? Also, what would you tell someone who already knows they have OCD and worries they’ll pass it along to their children?

A lot of people with OCD worry that they shouldn’t have children, for fear that they will pass their OCD on to their children. This is certainly a possibility. But if you have OCD yourself and know the proper treatments for it, then you are the best possible person to recognize OCD in your child and to guide your child to the correct treatments. Because I knew what it was like to suffer from OCD (and recover from OCD), I knew what my two daughters needed when their OCD started to flare up when they were kids. I was able to recognize their OCD symptoms when they first appeared and promptly seek out the proper therapy and medication for them. They are now both in their 20s and are doing well.

You’re doing well now. How do you keep on top of your symptoms? How long has it been since you really struggled with OCD?

I was very fortunate that both medication (Prozac) and ERP worked so well for me. Because Prozac made such a huge difference in my recovery, I have continued to take the 60 mg/day Prozac for more than 20 years now. I feel like the medication saved my life. I’m still so thankful for my recovery that I have never considered stopping the Prozac in all those years. (I’m fortunate that I don’t have any adverse side effects to the medication.) Because the Prozac continues to help and because I know how to use ERP whenever I get an OCD “urge,” I really have not struggled with OCD for about 20 years.

Once you learn how to use ERP correctly and effectively, you have the tools necessary to fight any OCD issues that come your way. Even if your OCD appears in a form that it has never taken before, once you know how ERP works and how to apply it, you can conquer any type of OCD that comes your way. Learning how to use ERP is hard work, but once you get the hang of it, it really works. I absolutely know that I’m much stronger than my OCD now, so I no longer have a fear of it tormenting me like it did in years past.

How can someone with OCD join your support group?

Anyone can join my online “OCD-Support” group by sending a blank email to OCD-support-subscribe@yahoogroups.com. My group is not only for individuals with OCD but also any family members and friends of people with OCD, as well as treating professionals.

In addition to my large general OCD support group, there are many other well-moderated groups on YahooGroups for more specific OCD issues or groups of people, such as groups for Teens with OCD, Parents of Kids with OCD, Pure-Obsessional OCD, Scrupulosity, Compulsive Skinpicking, Parents of Teens and Young Adults with OCD, and many more.

If you could give just one piece of advice to others with OCD, what would it be?

Never lose hope that you can conquer your OCD. The evidence-based treatments (CBT/ERP and the OCD medications) really do work. Believe in them. Work hard at learning how to do ERP. Your persistence and hard work will pay off in the end. But never, ever lose hope. You really can get control of your OCD and return to living your life the way you want to live it.

Tuesday Q&A: Renae Reinardy

Standard

Lakeside Center Dr. Reinardy PicAs some of you may know, I’m president of my local chapter of the International OCD Foundation (IOCDF), OCD Twin Cities. But I didn’t found the affiliate — today’s guest Renae Reinardy did. She and her co-founder Randy Herrera did all the hard work to get the nonprofit up and running, and I took over two years ago after Renae moved to Fargo, North Dakota, where she has her own practice, Lakeside Center for Behavioral Change.

Renae is an expert in the treatment of OCD and related disorders, including hoarding — she appeared on the the A&E series Hoarders and produced a documentary called Information About Compulsive Hoarding. Thanks for joining us, Renae!

We were introduced when I took over as president of OCD Twin Cities. I had some big shoes to fill! Why did you decide to start the affiliate here, and how did the whole process work?

Randy approached me and said he would like to start an affiliate and would like my help. I was totally swamped in my office, but knew how important it was to have this resource so we worked hard and quickly to get the affiliate off the ground. We were happy to have everything in place by the IOCDF conference that was held in Minneapolis. I loved being a part of the affiliate and we had some wonderful events and fantastic volunteers.

What do you consider your biggest success with OCD Twin Cities?

Some of the highlights were the golf tournament fundraiser, sponsoring two therapists to attend the Behavioral Training Institute, donations to children at Rogers Memorial Hospital from Build a Bear, support group awareness, and our quarterly meetings.

You treat OCD and related disorders, including hoarding. In the last revision of the Diagnostic Statistical Manual (DSM), hoarding was changed from a symptom of OCD to a disorder under its own category. What do you think about that change? 

It is wonderful to see hoarding disorder in the DSM-V. This validates millions of people’s experience with this disorder by giving it an official title (even if people don’t like the term “hoarding”). It also means that more research can be done in this area. Hoarding is a complex behavior that comes in many varieties. Co-morbid conditions really influence the approach that a therapist should take in treatment. Hoarding can be exacerbated by depression, ADD/ADHD, trauma, eating disorders, dementia, and/or OCD. Hoarding and OCD are different conditions but do share some common features.

What is the best line of treatment for hoarding?

Treatment varies depending on the symptoms that the person is experiencing. A client who has hoarding and trauma will have a very different treatment plan than someone with hoarding and ADHD. When compulsive acquisition is a factor, we will talk about non-acquiring exercises such as non-shopping sprees. Treatment commonly includes cognitive restructuring, exposure to discarding, improving decision-making skills, and replacement behaviors.

You also treat dermatillomania (skin picking) and trichotillomania (hair pulling), both compulsive behaviors that go beyond messing with a pimple or tweezing stray hairs. How common are these disorders? How are they treated–and do you use similar techniques for both?

Hair pulling and skin picking are very common conditions. They fall under an umbrella titled body-focused repetitive behaviors, which also includes nail biting. Everyone picks, pulls, or bites skin, hair, or nails at some point, but when these behaviors become out of control and damage results then it becomes a clinical issue. There are many skills available to help people with these conditions. I also wrote this article that discusses treatment.

Courage Critter back pocket

You invented Courage Critters to help children face their fears. How do Courage Critters work–and why is it so important that parents and caregivers encourage kids not to back down from their fears?

The mission of Courage Critters is to Empower, Support, Protect and Love children who are experiencing fear or body-focused repetitive behaviors. Through the website, children can begin to learn lifelong skills to help them confront fears rather than engage in avoidance or non-adaptive coping behaviors.

On the website, children and caregivers will find a section called Fear Busting Tools. Under this section, there are several tabs that describe the skills offered as part of the Courage Club. The Standing Up to Your Fear Bully Plan tab will help children to identify their fear bully and the impact it has on their behaviors. There will be questions to help guide caregivers through this process to really know how fear impacts the child. Once we know what we are dealing with, then we will develop a plan to gradually stand up to the fear bully. This is where children grow some huge emotional muscles! Fear is measured with a fear thermometer and children and their caregivers make small goals to gradually change behavior. There is an example of how to set up this plan under the tab, Example: Standing Up to Your Fear Bully Plan.

The Good Coach Thinking tab will show consumers how to identify the “fear bully talk” inside of the child’s head. When we know what the fear bully is telling us, we can start to challenge and change those thoughts into “good coach thinking.” There are a series of short questions to help children identify, challenge and change unhelpful thoughts. The tab, Example: Good Coach Thinking can show consumers how to use this skill.

Relaxation is another really important skill that can be practiced. There are many relaxation tools that can help our mind and body become calm. Caregivers and children will find an example of one under the tab, Relaxing Breath.

Through the use of these skills children feel more confident, courageous and ready to take on their fear bully. Having a tough-looking little green sidekick doesn’t hurt either.

Can all children benefit from Courage Critters and its coping methods, or is it especially helpful for kids with a disorder like OCD?

The Courage Critters program is a tool that parents, caregivers, teachers, doctors, and children can use as a guide to decrease common childhood fears and body-focused behaviors. The Courage Critter will provide the child with comfort while this website offers a fun, and interactive program. As a member of the Courage Club consumers will be able to access all pages on the Courage Critters website. Many children struggle with common childhood fears every day. Fears of the dark, storms, medical procedures, and new places are just a few examples of common fear triggers. Childhood fears are amplified by a child’s imagination and difficulty distinguishing reality from fantasy. Courage Critters helps a child to use their imagination skills to empower, support and protect them in situations that cause many of these common childhood fears. This can be especially helpful for children with OCD and related conditions. Courage Critters also aims to help children with Body Focused Repetitive Behaviors (BFRBs). There are many behaviors that fall under the category of BFRBs. Some of the most common include nail biting, skin picking and hair pulling. These behaviors affect millions of people, but most kids who have a BFRB feel very alone. The Courage Critters program lets them know that they are not alone and that there are many useful skills that can be utilized to decrease unwanted behaviors.

You’ve lived in large metropolitan areas, and you currently live in Fargo, North Dakota, which is bigger than many people realize. But there are several small towns and farming communities in the surrounding area, both in Minnesota and North Dakota. What advice do you have for people who live in more remote rural areas with minimal access to proper OCD treatment?

Many of my North Dakota clients drive long distances for therapy. Although, this was still the case when I practiced just outside of Washington DC. Access to treatment remains a challenge for many, but it is getting better. It is great to support organizations like the IOCDF and your local affiliates. Raise awareness of these conditions by providing information to your doctors. There is training and supervision available for therapists who are interested in learning more about OCD and related conditions. Some therapists offer video conferencing or phone sessions to clients who do not have anyone in their area. You can find a therapist in your area by visiting iocdf.org.

What tips do you have for preventing relapse? Is some degree of relapse inevitable?

It is important for clients to really understand how to do exposure and response prevention with all of the manifestations their OCD may take. As a therapist, I go from being a teacher to a consultant with my clients. I want them to know the necessary skills to keep moving forward. It is good to keep on eye on symptoms and use all of their tools to keep symptoms from returning. When symptoms are caught early, it is unlikely for them to grow to the point of being unmanageable. Keep being honest with yourself and call your provider if you notice that you may need a “tune-up.”

If you could share just one piece of advice with people with OCD, what would it be?

Think of your OCD as a third grade bully. You cannot reason with it, or convince it of factual information. The best way to stand up to this bully is through exposure exercises to desensitize to the bully. This allows the internal heckling to move to the background, lose power, and eventually go away. For many of my clients the goal is to decrease OCD bully talk, behaviors, and sensations to less than 10 percent. Do your ERP skills and have a structured hierarchy to gradually stand up to your fears. You cannot train for a marathon in a day; it can also take a little while to build your emotional muscles to stand up to OCD. Fortunately, it gets easier as you go, and this is a battle you can win. Find the right amount of support on your journey.

A Roundup of Advice

Standard

I tailor my Tuesday Q&A questions to my subject, but there’s one question I always ask: “If you could give just one piece of advice to someone with OCD, what would it be?” Here’s a roundup of every piece of advice — so far.

“Try and find someone you trust to talk with about your obsessive thoughts. This can be a family member, a doctor, a clergy person, or someone affiliated with the IOCDF. But no one should have to deal with OCD alone.” Lee Baer

“It sounds like a cliché, but I think this encapsulates everything I try to put out there: Choose to believe beyond your doubt.” Jeff Bell

“The best advice I would have to give out would be to remind yourself that OCD just wants power, it likes to lie and take over. Don’t let it — use mindfulness and grounding techniques to get by, take your thoughts, emotions, and feelings with you wherever you go, sit with them, and continue on. At the end of the day it doesn’t matter how you felt, but how you lived. And there is help and there is hope!” Jessica Bishop

“Two pieces of advice, if I’m allowed. One: Be cautious whose advice you take. I realize the irony of this sentence as I type it, but OCD is a very complicated illness and non-expert opinions can often be unhelpful. Two: Get a course of ERP combined with CBT — it could turn your life around.” Rose Bretecher

“Reach out, don’t turn inwards. You are not the only person who has felt the way you feel, you are not the only person in the world who has thought the terrible things you have thought. There are people who know exactly what you are going through and people who want to help. It is only by coming together that we realize we are not alone. OCD is such an isolating disorder that’s what it wants to do, it wants us to think we are depraved and disgusting and alone. The truth is we are not. We have a mental disorder. A mental disorder is nothing to be ashamed of any more than diabetes or cancer is. You are not alone…someone cares.” Julie Burnfield

“Don’t give up, there’s hope. When it seems that getting better is impossible, believe that it is possible, because it is.” Jenn Coward

“Don’t rely on one piece of advice. If you can access and afford to see an OCD specialist, listen to what they have to say and do the work, all of it, even if the work makes very little sense in the beginning because it’s such the opposite of what you want to do sometimes. If you can’t access a therapist, read several books on OCD, utilize a workbook, educate yourself about the disorder and teach yourself the tools to master it as best you can. Join a support group, follow an OCD blog, go to an IOCDF conference, connect with other OCD sufferers. Take your own advice and pool it together with the advice of people who know about OCD. You’re not alone so don’t be alone.” Jon Hershfield

“Just one piece! That is hard! My advice to those with OCD is that recovery is possible for anyone — you are not an exception! But recovery does not come without some really difficult work. Make the commitment to ERP and trust the process!” Chrissie Hodges

“Learn as much about it as you can! Once you have context, you can better navigate what’s happening. I keep an OCD file on my phone where I store tips, quotes — anything that I can quickly access and remind myself of when I feel like I’m going under. One of my favorites is from Jon Hershfield, ‘If OCD thoughts are loud, the options are to accept their loudness or try to turn them up and blow out the speakers.’ But I can’t stop at one! Tip two: Connect with others who have OCD at your own pace, whether it’s an anonymous online group or a support group in your hometown. Peer support is special and dear to my heart.” Melanie Lefebvre

“You don’t have to suffer. It was a long, hard road for me getting well — today there is a lot more help for us. Get help. I know I couldn’t have gotten better by myself. The OCD Conference in Boston really encouraged me. We’ve come a long way in research, medication, therapy, and support. Never feel shame in being ill with something that’s not your fault. Have hope…because it’s real.” Clint Malarchuk

“You are not alone, you don’t have to suffer in silence, and help is available. With the appropriate treatment (ERP or ERP and medication) you can gain control of your OCD and learn to manage your illness. Treatment is number one always, but the second thing I recommend is to meet someone else who lives with OCD. You can do this through the International OCD Foundation’s conference, support groups, or online groups. Understanding that there is help available and that you aren’t alone are in my opinion the two most important things to help you gain control of your OCD. Lastly, I would recommend giving back when and if you are ready. I have found some of my greatest healing has come from sharing my story and helping others in need with OCD or a mental illness.” Elizabeth McIngvale

“Never, ever give up. You can take your life back from OCD.” Shala Nicely

“Don’t base the decisions you make in your life on what your OCD wants. It is your life; base your decisions on what you want.” Carol Rettner

“My doctor told me that it was possible to get better. I believed him. I saw this as hope. It became my beacon and lifted me when I was struggling mightily, particularly when I was at my lowest. So believe with all your heart that it is possible to get better. Let hope be your beacon. Stay in the fight.” Shannon Shy

“Don’t wait one more day to get the right help. OCD is treatable! I have never met anyone who has regretted doing ERP therapy. The only regret I hear is for not having done it sooner.” Janet Singer

“Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug.” Ethan S. Smith

“ERP, ERP, ERP!” Jackie Lea Sommers

“I would suggest seeking help in the first place. Of course I mean specialized help (CBT/ERP therapy). Secondly, it is important that people suffering from OCD understand that they are not their disorder. OCD is not a personality trait, not even a personality disorder. We need to dis-identify from our symptoms and focus on our CBT/ERP treatment. I would also encourage OCD sufferers to talk about their disorder. There is nothing to be ashamed of or feel embarrassed about. As I said, our symptoms do not define our identity. One way of breaking stigma is letting people know about our OCD instead of trying to hide its manifestations.In sum, OCD can be treated, sufferers can actually get better and enjoy more functional lives. There is no need to hide; in fact, the more we talk about our OCD the less OCD will speak for us.” Ro Vitale

Tuesday Q&A: Rose Bretecher

Standard

Head shotEveryone with OCD has at least one thing in common, and I’ve met a few people with OCD over the years who I’ve really connected with. But I feel like I have a lot in common with Rose Bretecher, at least when it comes to our experiences with OCD. I’m not sure about the rest of our lives — she’s British, for one, and she’s met Jake Gyllenhaal. I haven’t crossed that one off my list yet.

Since I relate to so many of Rose’s obsessions, I applaud her especially for being open about them. It’s not easy to talk about pedophelia obsessions, or HOCD, or any taboo obsessions, but Rose lays it all out in her new book, PureThe subtitle asks, “Have you ever had an inappropriate thought?” Why, yes. Yes, I have. If you have, too, I hope you’ll check out her book as well as her courageous and eye-opening articles in The Guardian, Pure OCD: A rude awakening” and “A moment that changed me: Charlize Theron’s boobs, my boyfriend, and OCD.”

As painful as some of her obsessions were, she can laugh about them now — at least sometimes. Her attitude toward these taboo obsessions is refreshing and could go a long way toward destigmatizing the disorder.

You were diagnosed in your 20s after years of battling unsettling and unwanted obsessions. Why do you think it took so long for you to realize OCD was to blame for your intrusive thoughts?

Because OCD awareness is still very poor. If you’re experiencing disturbing sexual thoughts, and you have no idea that they’re a symptom of OCD, you’re likely to keep them quiet. And sufferers keeping quiet means that awareness remains poor. It’s a very self-defeating illness. Even when I was diagnosed it seemed so ridiculous that I struggled to believe it myself. I hope that kind of incredulity will change over time, as the full spectrum of OCD becomes more widely understood.

Somehow those of us with OCD can hide our torment from even those closest to us, especially when we struggle more with pure O than, say, hand-washing rituals. Were your friends and family members surprised to hear you’d been diagnosed with OCD? How did you tell them?

I’d told a couple of people a sugar-coated version of my story, but saying those things out loud proved extremely difficult. In the end I wrote about it for a UK newspaper, so my family and friends were reading about my experiences at the same time as hundreds of thousands of others. It wasn’t a very intimate way of doing it, but it was easier writing those words than saying them.

Although it took longer than you would have liked to get the proper diagnosis, somehow you were clued in to OCD and diagnosed yourself after conducting some Internet research. Unfortunately, your doctor recommended the wrong treatment first, which you said made your OCD worse. Tell us more. How did you ultimately find effective treatment?

I was prescribed psychodynamic therapy, which encourages a great deal of soul-searching and exploring your past to try and ease your current suffering. Unfortunately that only served to collude in my compulsive behavior — I’d been soul-searching for an answer to my identity for a decade and had only made myself worse. Sadly, I found effective treatment through trial and error over many years, and a lot of research — I knew what hadn’t worked in the past, so I knew what to avoid. In the end it was CBT with exposure and response prevention (ERP) therapy which saved me.

Cover

The title of your book, Pure, is perfect. Not only do you have pure O, but you might say some of your intrusive sexual thoughts aren’t exactly considered pure. In fact, they’re considered pretty taboo. How did you decide to disclose these very personal and painful thoughts in a memoir?

I just had this overwhelming feeling that this was a story that needed to be told in a very public way. It seemed scandalously unjust to me that so many people were experiencing this, yet no one felt able to talk about it. So I thought — screw it — let’s do this. If something bad happens, it’s not going to be as bad as a lifetime of keeping secrets. The thoughts themselves didn’t feel too personal, as by then I knew that they didn’t reflect my identity, and that they were being experienced by countless others out there.

You noted in one interview that when you struggled with the pedophilia obsessions you felt like you’d committed an unforgivable sin. How did you realize you had nothing to be sorry for? Was it as simple as being diagnosed with OCD and understanding it was the culprit, the “bad guy,” not you? Or did it take some time to forgive yourself for the thoughts — no matter how unwelcome they had been?

It’s strange. I’m 29 now. Those thoughts started 14 years ago and I think my brain has done a very good job of making me forget just how traumatic that time was. The cognitive knowledge I’ve learned has made me realize that thoughts are just thoughts which don’t necessarily reflect intent. Instead of forgiving myself, I learned that there was nothing to forgive.

You also struggled with another very common sexual obsession, homosexual OCD, or HOCD. How did this affect your relationships with men? Did you avoid dating at all during this time?

It had a disastrous effect on my relationships with men. I was terrified of commitment. I felt I couldn’t commit to anyone until I was 100% certain that it was the right thing to do. I had this recurring thought — what if I settle down and then years down the line I realize I’ve made a terrible mistake? Ultimately I had to accept that I can never be certain that that won’t happen, and jump in with both feet anyway.

unnamed

Your boyfriend is very understanding. So many single people with OCD are terrified they’ll never find love, and that someone who doesn’t have OCD couldn’t possibly understand — and I think this is particularly true when they have sexual obsessions. We worry that we’ll be perceived as some sort of sexual deviant. Do you have any advice for my readers who don’t know how to tell a mate what’s going on?

I was lucky with my boyfriend. He totally understands. We live in a very accepting social circle. My thoughts about homosexuality didn’t trouble me because I thought they were deviant, they troubled me because I desperately wanted certainty that I couldn’t get. Advice? I guess having a favorite OCD article or definition which you can place in someone’s hands is a good way of expressing what feels like the “unsayable.”

Do you still consider yourself to have OCD even though you’ve largely conquered it?

Yes. I’ll always have OCD, and I’ve made my peace with that. I’ve been through effective therapy and I know how to manage new obsessions when they arise.

If you could give just one piece of advice to someone else with OCD, what would it be?

Two pieces of advice, if I’m allowed. One: Be cautious whose advice you take. I realize the irony of this sentence as I type it, but OCD is a very complicated illness and non-expert opinions can often be unhelpful. Two: Get a course of ERP combined with CBT — it could turn your life around.

Tuesday Q&A: Lee Baer

Standard

IMG_3972 top pickIf you follow my blog or know anything about me at all — at least as far as my OCD story goes — you know how much I respect and admire Dr. Lee Baer, author of The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad ThoughtsWhen I finally made an appointment with an OCD specialist and croaked out a few words like “bad thoughts” and “no one will love me if they know,” the psychiatrist recommended The Imp of the Mind. “It could fit in my front pocket,” he said, patting his shirtfront, “but it’s packed with good information.” (By the way, that’s only true if you have unusually large pockets, because the book isn’t that small.)

That “little” book saved me. After having silently suffered with taboo obsessions for years and years, I learned that I wasn’t actually alone — I wasn’t the only person who’d had thoughts like I’d had, and they were nice, relatively normal people, too.

Nine years later, Lee and I are collaborating on a peer-to-peer support program (stay tuned!), and we presented together at the OCD Conference in Boston in August. What a rush! As I tearfully told everyone in the audience, I was up there with my hero.

Now you have the benefit of hearing directly from him — sorry, these are all my questions, but I tried to ask what you’d want to yourself if you had the chance. Thanks, Lee!

When I was struggling the most with my taboo obsessions I was actually worried that getting better would be a negative thing. I thought, “What kind of person would I be if these terrible thoughts didn’t bother me?” and I thought the distress is what kept me from acting on them. What would you tell someone with similar fears?

This is very common: OCD is very tricky so it puts sufferers of taboo thoughts in a “damned if you do, damned if you don’t” dilemma. It is very important to recognize that the OCD is trying to make you think like this and not be fooled. CBT and/or medications will not make you any less empathetic to terrible things that happen in the real world–instead, they will keep you from over-reacting to “what-if” scenarios that OCD conjures up in your mind.

What made you decide to treat OCD?

I have specialized in treating patients with OCD and related problems since about 1985, when Drs. Jenike, Minichiello, and I established one of the first OCD treatment and research programs in the country at Massachusetts General Hospital, because we were fascinated by this disorder, in which otherwise highly intelligent people experienced thoughts and rituals that they were unable to control. Also, at that time, OCD was considered to be resistant to existing treatments so we saw solving this problem as both a challenge and an opportunity to make a real difference in people’s lives.

ImpoftheMind

I recommend The Imp of the Mind all the time. As you know, it was one of the first things my psychiatrist prescribed the day he diagnosed me with OCD, and just knowing I wasn’t the only person with taboo obsessions like mine helped tremendously. Why did you focus on this type of OCD?

The idea for this book developed soon after we founded the OCD Institute residential treatment program at McLean Hospital in 1997. In the course of running several groups in this program, I noticed that patients with taboo obsessions felt ashamed to discuss their problems in group settings with other OCD sufferers with problems like excessive hand-washing or checking doors or electric plugs. When I asked why, these sufferers of taboo obsessions told me they felt that the other patients’ problems–although very troubling–did not have a moral component and did cause one to question if he or she was truly evil. They worried that these other patients — although they also had OCD — would not understand their taboo obsessions and think they, in fact, wanted to do the terrible things they imagined. To address this problem, I began a separate evening group for individuals with taboo obsessions, and found that the participants experienced great relief in being able to share their experiences with others who had similar problems. It was through running this group that I recognized the need for a book on this topic to reach others who were suffering in private. And it was through my experience with these groups over several years that I learned much of what I know about these taboo obsessions.

In The Imp of the Mind you share an example from White Bears and Other Unwanted Thoughts by Dr. Daniel Wegner. The basic idea is that if you tell someone they’re forbidden from having a certain thought — in this case, picturing a white bear — they’ll be even more likely to have the thought. In fact, the thought becomes stronger the more they try to rid it from their mind. How can someone with taboo intrusive thoughts overcome the urge to push the obsessions out of their minds as quickly as possible? The thought of murdering a loved one is so painful it’s a natural response to recoil at it.

Dr. Wegner’s book explains one key reason for the “stickiness” of taboo obsessions in a very easy-to-understand way. Dr. Wegner and I often discussed this topic, both before and after he joined the Harvard College faculty, and I was saddened by his untimely passing two years ago. We agreed that the first step for sufferers of taboo obsessions was for them to understand that thoughts passing through our minds are not as important as we often believe them to be. Everyone has thoughts they don’t like having at times, but the very universal nature of these thoughts proves that they are not dangerous — if this were not the case, violent and sexual attacks would be occurring daily in every home and office! Taking this leap of faith is often the first step in successful treatment. Secondly, sufferers have to understand that OCD is “tricky” and it will try to get you to fight the obsessions, giving them strength, through the mechanism of “thought suppression” that Dr. Wegner researched so thoroughly. Truly understanding these two concepts often reduces the OCD sufferers’ suffering instantly.

People with taboo obsessions are terrified they’ll act on their thoughts. They think the thoughts must mean something; otherwise they wouldn’t have them. Without giving in to our compulsion to be reassured, what can you tell us about the likelihood of people with OCD acting on their obsessions?

Although I tell my patients (only once, mind you!) that based on my experience, and the experience of my colleagues who treat OCD, they will not act on their violent or sexual obsessions. However, I also know that this will not really work to reassure them, because OCD preys on doubt and tries to get them to find absolute, 100 percent certainty. Yet there is no absolute certainty about anything in the future — even about the sun rising tomorrow — so the solution is to learn to live with the feelings of uncertainty, even of things that are extremely unlikely.

Why do you recommend ERP to patients with OCD?

I tell my patients that we all have a “rational brain” and an “emotional brain.” Their rational brain can understand that their taboo obsessions are not meaningful, and they need to learn to let these obsessions pass without fighting them, while their emotional mind can continue to react with strong, uncomfortable feelings to these thoughts. The most effective, non-drug treatment we have for reducing or eliminating this reaction of their emotional mind is through exposure and response prevention. I describe this process in detail in my book Getting Control.

getting-control-overcoming-your-obsessions-and-compulsions-lee-baer

Many people with “pure O,” that is, mostly obsessions coupled with mental compulsions, wonder how ERP will work for them. You can’t have advise them to touch a toilet seat and then resist the compulsion to wash their hands, for example. Let’s say someone with pedophilia OCD comes to you. How might you go about exposures?

I’d first help them to identify situations that they are avoiding due to their obsessions. Next I would have them gradually go into these situations while learning to tolerate the discomfort and obsessions that come while doing it. This is called in-vivo, or real-life, exposure and response prevention, and I always try to begin with this if possible. We’d also probably prepare a worst-case scenario of their worst fear coming true for them to record and listen to at home until their discomfort goes down without ritualizing. This is called imaginal exposure and response prevention.

What advice do you have for folks who live in rural areas or far from quality care?

I would definitely suggest they start by joining the International OCD Foundation (IOCDF) and, if there is one, their local chapter. This will provide them a wealth of support and information about support groups and providers in their area, as well as the annual meetings for sufferers and their families to learn about treatment for OCD.

You and I have been working on a peer support program — our goal is to match folks who have taboo obsessions with people who have had similar obsessions and have been some progress toward recovery. What are the benefits of such support?

My experience has always been that it benefits both individuals greatly: I have yet to have a patient get better from their taboo obsessions who is not excited about the idea of having the chance to give back to another sufferer at an earlier stage of dealing with this disorder (probably because they remember how hard it was at the beginning for them). And for my new patients, hearing from someone with similar symptoms who has gotten better gives them hope, and also lets them feel comfortable sharing some of their most private fears, often for the first time.

If you could give just one piece of advice to people, what would it be?

Try and find someone you trust to talk with about your obsessive thoughts. This can be a family member, a doctor, a clergy person, or someone affiliated with the IOCDF. But no one should have to deal with OCD alone.

Tuesday Q&A: Janet Singer

Standard

Happy Tuesday! I’m pleased to host a fellow blogger and author today, Janet Singer of OCDTalk. Janet is a tireless advocate for the proper treatment for OCD — and she doesn’t even have the disorder herself. After watching her son suffer through many missteps of treatment, Janet dedicated herself to spreading awareness about OCD and how to best treat it, namely, exposure and response prevention (ERP) therapy.

Janet’s first book, Overcoming OCD: A Journey to Recovery, came out earlier this year. A gripping and sometimes heartbreaking read, it is a memoir of her family’s experience with treatment — medication, “talk therapy,” and residential treatment. You can read my review, but first let’s chat with Janet.

OvercomingOCDYou’ve been blogging about your experience as a parent of a child with OCD, and you also wrote a book, Overcoming OCD. So far it’s not something your son has shared as openly as you have. What did he think when you told him you wanted to start a blog, as well as contribute to existing blogs, in order to help others like him get the proper treatment sooner?

You are absolutely right that my son doesn’t like to talk about his experiences with OCD, though he doesn’t hide it from his friends. I actually asked his permission to blog and work on a book, as I didn’t want to become involved in anything that would make him uncomfortable. He saw how passionate I was and realized how helpful our family’s story could be, so he was fine with it. His only request was that I use pseudonyms for our family.

You could have easily receded into the background after Dan triumphed over OCD, but you have been tireless in your efforts to spread awareness about this often misunderstood disorder. Tell us why.

What initially propelled me forward was the fact that ERP therapy is not well known or widely used to treat those with OCD, even though it is the first-line psychological treatment approach as recommended by the American Psychological Association. It was so unacceptable to me that I decided I would spread the word myself! My advocacy efforts widened and evolved quickly, and now I talk about anything and everything related to OCD. But spreading the word about ERP, and letting people know that OCD, no matter now severe, is treatable, is what got me going, so to speak.

Was writing a book about your family’s experience always a goal, or did it become apparent that it was something you needed to do as you advocated more and more in the OCD community?

It was always a goal of mine, even before we had our “happy ending” as I honestly felt our story could be helpful to so many people. I did put it on the back burner for a while as I was so busy and involved with my blog, but I knew at some point, I needed to write that book.

How did you first realize Dan needed help? Did he have obvious compulsions, or did he come to you to tell you about his symptoms? 

We first realized Dan needed help when he came to me and my husband and said, “I have OCD. I need help.” Seriously, we had no clue, even though he was 17 and still living at home at the time. He diagnosed himself with the help of the Internet. Because his compulsions were mostly mental, it was easy for him to hide them. Of course in hindsight, we now know there were signs.

When he was first diagnosed, what treatment did he seek?

His long-time pediatrician gave him 10 mg of Prozac and suggested he see a therapist. So off he went to the local psychologist in town, who told us he treated OCD. He used “talk therapy” with Dan, and told us his OCD was “no big deal.” Sigh. So many mistakes were made!

Janet, I read your book, and let me tell you, it was heartbreaking at times. You watched your son deteriorate before your eyes, and you and your family put all the hope you had left in a residential treatment program. Dan’s treatment didn’t go as planned, however. You began to worry that he was too attached to the program and wasn’t learning how to re-enter the real world, particularly the college he’d worked so hard to get into. What do you think should have happened differently?

My main complaint about the residential treatment program is that my husband and I felt deliberately shut out of all aspects of Dan’s care while he was there. While we understand that we didn’t need to know the specific details of his OCD or even his ERP therapy, we absolutely should have been involved in decision-making that would potentially affect his life’s goals and his dreams. There is no question the treatment center knew how to treat OCD. But they didn’t know our son. They saw Dan in the worst shape of his life, so of course they couldn’t really know him as a person — his values, hopes, dreams, goals. We naively thought we would be encouraged to collaborate with the treatment providers to figure out the best ways to help Dan. That never happened.

I know many people need residential treatment, and it’s possible to thrive after completion. Do you have advice for individuals who may be entering such a program, or for their parents, so that they get the most out of it?

For parents, I would recommend asking questions before your child even attends. Make sure you feel comfortable with your expected level of involvement in your child’s treatment, and make sure to speak up if you feel you are not being heard. So many parents feel intimidated by “the experts” and just defer to whatever they recommend. I think this is a big mistake. Nobody knows your child, or cares about your child, as much as you do, and your thoughts, opinions, and feelings should absolutely be taken into account. I don’t have OCD so it’s hard for me to advise someone who is entering a program, but I do know how important it is to commit yourself fully to the intensive treatment. It’s scary, but in the end, so worth it.

Another roadblock on Dan’s path to recovery was overmedication. At one point he was diagnosed with ADHD, an analysis you completely disagreed with, and he was medicated for that, as well. How can a person with OCD empower oneself to take treatment one step at a time in order to avoid a situation similar to Dan’s?

That’s a great question, Alison, and I’m not sure I’ve got a good answer. I could say “educate yourself,”  or “research different meds,” etc. but Dan was in no condition to do any of that himself. He was doing so poorly at the time,  and was happy to take a new drug that “might” help him. And he trusted his doctors. And because his OCD was still so intense, he often wasn’t thinking clearly. Though I don’t have a good answer to your question, it brings up the importance of having loved ones advocating for those with OCD when things are really bad.

It seems that Dan hit rock bottom at a particularly awkward time — he was 19, so he wasn’t a child anymore, but he also wasn’t a fully independent, mature adult who knew how to navigate the mental health care system on his own. How did you and your husband overcome some of the hurdles you faced in this parental gray area?

You are absolutely right that his age complicated things. Because he was over 18, his doctors couldn’t tell us anything without his permission. Dan was happy to include us in everything, so this was really only a problem at the residential treatment center, when the staff did not communicate with us. I think his age was more of an issue for us as parents. We tried to treat him like a “normal” 19-year-old, but how do you do that when your child is barely functioning? As he got better, we had to let go more and more, even though it was scary for us as parents. It was a constant balancing act. I forced myself to put some of my worries aside so that Dan could move forward toward a life of independence. I reminded myself that while it would have been easier for me to just keep Dan close to home and monitor his every move, it really wasn’t what was best for him.

That brings up a common issue in treating OCD. Oftentimes the best way to help a person with OCD is to not help, meaning we shouldn’t enable him or offer too much reassurance. How did you make sure you were helping Dan find the right treatment without defaulting to what probably felt natural as a mother — comforting him, reassuring him, doing whatever it took to ease his distress?

Great question. When I first found out he had OCD, I comforted and reassured him all the time because, as you say, that’s what mothers do. Looking back, it’s amazing to me that none of Dan’s treatment providers ever explained to us that accommodating Dan only strengthened his OCD. That’s something we learned through our own reading, etc. Families need to be educated! Honestly, once we understood how and why reassurance fuels the fire of OCD, it was easy to stop because we knew it was best for Dan. Also, Dan would actually tell us when we were inadvertently enabling him, as he wanted to get well so badly. As we worked toward finding the right treatment, and went through so many ups and downs, I’m sure we enabled him at times without realizing it…it was a definite learning process — doing the “opposite” of what your instincts tell you isn’t easy!

How is Dan doing now?

Thankfully, Dan continues to do well. He is 26, working in his chosen field, and living with his girlfriend. And he’s happy. What more could I ask for?

If you could give just one piece of advice to someone with OCD, what would it be?

Don’t wait one more day to get the right help. OCD is treatable! I have never met anyone who has regretted doing ERP therapy. The only regret I hear is for not having done it sooner.

Tuesday Q&A: Ethan S. Smith

Standard

It’s a big week — the week of the 22nd annual OCD Conference! It’s in Boston this year, where the International OCD Foundation (IOCDF) is based, and I’m so excited to be a part of it again. But enough about me.

Last year Ethan Smith, a Los Angeles-based actor, writer, producer, and director, delivered the conference keynote. Ethan described his fight against severe OCD, and even as he was talking about the darkest moments of his life he managed to make the audience laugh. In retrospect, he was able to see — and share — the humor in getting kicked out of residential treatment at the OCD Institute at McLean Hospital in Boston by deliberately hurting himself and pretending to pass out on a snowbank.

Ethan will be at the conference this year as well, so be sure to check out some of his sessions.

maxresdefault

Photo credit: Roberto Farren

Last year, after years of suffering from OCD, you gave the keynote presentation at the 21st Annual OCD Conference. What inspired you to apply for this huge honor — and long speech?

To be honest, I wanted to give the speech the minute I knew it existed. Probably desperate is the right word when describing how badly I wanted my story out there so others wouldn’t have to go through what I went through. I knew through that speech I could impact the most amount of people. 

During your presentation you shared candid videos of yourself engaging in ERP. You said you’d never shown this footage to anyone, and suddenly you were sharing it with a room full of people. How did you find the courage to do this? Why did you think it was important for the audience to see you in your lowest moments?
 
During the intervention portion of my treatment, I was fortunate enough to have one of the therapists at the OCDI playing an almost coach role in my life, in addition to my therapist. Because of this, although I was a victim of stigma many times before getting better, I never felt embarrassed about what I had gone through because I was able to discuss my concerns, doubts, fears, and pretty much everything else as they happened in the real world, in real time. I started to feel a sense of pride and accomplishment for what I had been through. Therefore, those videos represented a completely different person. They represented what I had been and where I had come from, not who I had become. It was a shell of my former self. But a very significant shell. It’s a side of OCD people don’t often see, especially the public. It’s a far cry from quirky hand washing or laughing about germs. Seeing how low OCD can take you is necessary to reach those who haven’t hit that bottom yet. To let them know that bottom exists should they choose not to pursue treatment or take it seriously. It’s the reality of severe OCD.

You’ve said you were born with OCD. How did you realize there was a name for what you were dealing with? When were you diagnosed?

It was only apparent I was born with OCD in retrospect. I went to my first therapist at age 6 but he did not diagnose me with OCD. I just had “issues.” I was a quirky kid with emotional issues. This was 1984. Did they even have an OCD diagnosis then? I didn’t realize there was a name for it. And to be honest, I didn’t really care. I don’t think I realized it was odd behavior until high school. I knew I wasn’t like other kids, and I definitely was unhappy much of the time, but I always thought, “That’s me. That’s who I am.” I don’t think I ever considered it was something else until I was actually diagnosed. I was diagnosed at age 14 after my first panic attack in high school. I refused to go back to school. I would just walk in the school and panic. After anything physical was ruled out, I went to a “top” psychologist in the Atlanta area and he diagnosed me with OCD. 

Ethan-and-Jeff-1000x355

Ethan and IOCDF director Jeff Szymanski

As a young adult you had a fear that you’d harm yourself, a fear so powerful you became scared of your own hands. Your life must have been pure torture at the point — you couldn’t escape your own hands, after all — but we know you’ve overcome this fear. How did you do it?
 
Just to clarify, most of my young adult life was spent being afraid of illness. Not germs, but a fever was meningitis, or a headache or a brain tumor. Constant trips to the doctor, I took my temperature upwards of 60 times a day, and carried thermometers with me at all times. The fear of harming myself didn’t come until I was 32 when I that trio of being off my meds, my girlfriend breaking up with me, and my grandfather dying happened. I just spun out of control and my OCD shifted based on a question a psychologist had asked me. He asked if I was impulsive. “Would you ever impulsively hurt yourself?” I thought the question was ridiculous. Of course I wouldn’t. And then I got in the car and thought, “What if I did? What if I just lost control and started hurting myself?” That’s when the OCD shifted. That was also the day I completely stopped taking my temperature for the first time in almost 20 years. 
 
As far as how did I do it, that’s a really big question. So I’m going to give you a very simple answer: I became willing to harm myself. I became OK with the idea that it might happen. I finally embraced the uncertainty and embraced radical faith and what my doctors were telling me.

After years of treatment — you attended the McLean OCD Institute (OCDI) but got kicked out and your mom even lived with you for a semester during college — you ultimately had to help yourself. How did you realize that if you were ever going to improve you had to take responsibility for your own recovery?
 
Ahhh, finally an easy question. When I was living in the crack house and hadn’t left the bed in six days. I hadn’t eaten, showered, barely drank any water. I realized no one was coming for me. Praying hard wasn’t enough. There was no magic that was just going to take it all away. I had to meet people halfway. I had to invest in myself what others were willing to invest in me. Only then, did I stand a chance. So I got out of bed and headed toward the fire. I never looked back.

Your parents were very involved in your treatment plan. Why should family members be a part of the recovery process? Is there such thing as too much family involvement?
 
I definitely think it’s individual in terms of too much involvement. But, what seems to be a very consistent pattern with OCD is that good parenting favors the OCD, not the child. The treatment for OCD is completely counterintuitive to parenting. Therefore, it’s a family disorder. The behaviors of the parents have to be modified in order to achieve long-term success. They must be just as educated about OCD, how it works, how it affects the sufferer, what snuffs the OCD out. I’m very passionate about imparting my position on family involvement. I firmly believe true success is impossible without the family/wife/caretaker component. Otherwise, after, let’s say, residential treatment, it’s just a dry addict going back to all his druggy friends he used to hang out with. Only a matter of time before he uses again. And once that snowball gets rolling, you’re back to square 1…or worse. 

Do you have any advice for someone considering residential treatment? Advice for not getting kicked out?
 
Haha! Yeah, don’t cut open your head and dive into a snowbank pretending to be passed out. Easy…Treatment is scary, and hard, and terrifying, and it most definitely gets worse before it gets better. But like I said in the keynote, the pain you invest now is worth the pleasure you’ll experience the rest of your life. We overcomplicate treatment. Treatment, at least in theory, is easy. Listen and say yes. That’s it! That’s all you have to do. Unfortunately, in order to do that you have to not listen to your own brain, what you believe to be your gut, all that you know. You’re most likely an incredibly intelligent, smart, creative individual and you probably know it. So, being told not to listen to the part of you that you believe makes you incredibly unique and special is a tricky proposition. Slowly but surely, however, you start to hear that the OCD sounds different than “you”; it becomes less tricky. It doesn’t define you or your uniqueness. In fact, in regards to OCD, you’re not special at all. It’s all the same tornado in all of us. Sure, it may suck in different stuff, but it’s the same. 
 
OCD is like math. In math there’s a right or wrong answer, and nothing in between. Treatment is exactly the same way in my opinion. Can you get better kinda sorta trying? Sure, but I think that’s still a wrong answer. Negotiate with OCD, surfing that area between the right and wrong answer, and you’ll never truly achieve the full life you’re looking for. Fully embracing treatment, especially residential, can potentially give you that right answer, that full life. Ever think you could have OCD and serenity at the same time? Yeah, me neither. But I do.ethansmith1

You’re able to joke and laugh about your OCD. How do you feel about others joking about it? How about people who claim to be “soooo OCD” on Twitter?

You have to have it to joke about it. Just like being Jewish and making a Jewish joke. Totally kidding. Listen, I think it’s a fine line. I know a lot of people that get really angry when the term “OCD” is misused or joked about. To be honest, for the most part, it doesn’t bother me, because in most cases it comes from a lack of education. When I hear it, I see it as an opportunity to enlighten and educate so that it doesn’t happen again. Anger or frustration regarding doesn’t yield an effective result. I know what cancer is and how it affects others. For the most part, you don’t hear a lot of cancer jokes. If you do, yeah…that person is a %*$&%*. But OCD, as with many mental illnesses, is still so misunderstood and grossly misrepresented. So can I blame the majority of people for saying they’re  “sooooo OCD?” No, but I can engage those people in a friendly way and redirect into something meaningful.

You recently shared some exciting news: You’re an IOCDF spokesperson! How did this come about?

Much like the keynote, I knew I wanted to be a spokesperson the minute I discovered they existed. It was just another avenue to share my experiences on a larger scale in the hopes to make a difference. As to why it happened or came about, I definitely expressed interest in becoming one to the amazing individuals at the IOCDF. I’m not known for being quiet or introverted, so I was vocal. But, in my heart, it was never about the “title” or becoming a “spokesperson.” It was about the work. It was about those suffering and not getting help. It was about no other child or adult suffering in the way that I did. That was/is my passion and my mission. But you can’t go on a mission from your couch, so I started talking to other people. Being open about my story. Allowing my former therapists to reach out to me as a resource and talk to their patients. And then becoming involved at the conference and speaking, et cetera. This work that I do, if you can call it work, is the most fulfilling part of my life.

If you could give offer just one piece of advice to someone with OCD, what would it be?

Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug. Oh…and don’t cut your head open and jump in a snowbank.

Tuesday Q&A: Jon Hershfield

Standard

I think I first heard of Jon Hershfield on Twitter — we definitely had OCD in common, so I followed him and always loved what he had to say. And then I kept hearing about him and his first book, The Mindfulness Workbook for OCD, on OCD support pages on Facebook. People love that book! Then we ended up being situated near each other at a book signing at the OCD Conference in Los Angeles in 2014, but we didn’t have a chance to meet.H_Family_i

We went the entire conference without being formally introduced, and I thought I’d lost my chance to meet him. As my co-presenter/hotel-mate and I were walking away from the conference after it had ended, she saw Jon and his dad leaving a restaurant and shouted, “Hey, conference people! Hi, conference people!” She’s not as shy as I am, by a long shot.

So that’s when I finally met him, after the conference was over, and he was as delightful and sharp in person as he is on Twitter. Since he lived in LA, he was walking home to see his family–but he’s relocating to his first home, the East Coast, in June. His new practice, The OCD and Anxiety Center of Greater Baltimore, will be located in Hunt Valley, Maryland, and will open on June 22. He’s licensed in both Maryland and California, so he’ll continue to work with clients in California via teletherapy, as well as new in-person clients in Maryland, focusing on mindfulness-based cognitive behavioral therapy for OCD.

When you decided to go into psychotherapy, did you know you’d end up working so closely with patients with OCD? What is it about this disorder that inspires you to help people struggling with it?

I decided to go into psychotherapy specifically because of how much cognitive behavioral therapy (CBT) had helped me in my own journey living with OCD. When I was in the thick of it (both the worst part of my OCD and the hardest parts of treatment), I began contributing to online support groups. I spent a lot of time reading and responding to emails from other OCD sufferers and discovered that processing the stories of other people with OCD was really helping me better understand the way my own OCD mind works. It was with the support of my wife, my parents, and my therapist that I decided to depart from a career in entertainment and go to graduate school for a masters in clinical psychology. I knew that all I wanted to do was CBT for OCD and actually hit up Dr. Michael Jenike for the recommendation letter in my graduate school application. So perhaps I am biased towards working with OCD sufferers because of my personal connection to the disorder, but I also like to think that people with OCD have truly special minds capable of doing amazing things. They have access to a spectrum of thoughts and creativity that is both awe-inspiring and overwhelmingly painful at the same time. Suffering occurs as a result of not really understanding how that kind of mind works and so using ineffective strategies to try to change it. The idea that we can write our own instruction manuals to better operate this OCD mind is simply fascinating to me.

Have you ever worked with a patient with a very severe case of OCD? How did you work through it?

I’ve worked with several cases of what I would describe as severe OCD. In my time at the UCLA Child OCD Intensive Outpatient Program, we only saw kids in the significant-to-severe range, and part of the reason we were able to break through the severity barrier was by providing several hours of individual CBT several days/week and incorporating the use of group treatment, parent education, and psychiatric medication management. In a simple private practice, time and resources are more limited. You typically see the OCD sufferer for a little less than an hour once or twice a week. So making progress in a severe case involves a combination of wise time management in session and the use of collateral resources (e.g., working closely with the client’s psychiatrist, bringing the family or spouse in for psycho-education). Sometimes the inclusion of home sessions can make a big difference as well. Severe OCD is as treatable as moderate OCD, so long as it is the OCD that is presenting the primary problem. If depression, for example, is getting in the way of treating the OCD (e.g., by depriving the sufferer of motivation), then that may need to be addressed first. In the end, homework and medication compliance are probably the biggest predictors of whether a severe case will become a moderate or mild case. Of the clients I have seen progress from the darkest depths of OCD to the greatest health, the thing they seem to have had in common was the willingness to let go of the idea that you have to wait to get better before pursuing the things you value (relationships, work, creating art, etc). In those cases, my job was mostly just to discourage waiting and then the exposure and response prevention (ERP) came naturally from that decision.

I’ve met several people with OCD over the years, and we all think our own obsessions and compulsions are the worst. We think, “You’ll be fine — all you worry about is inadvertently bringing down civilization because you didn’t wash your hands thoroughly enough. But obsess about killing my own child.” How do you respond to patients who have this mindset, that they’re somehow the exception who can’t be treated?

I think the next DSM should include a criterion for diagnosing OCD that says the person must have a belief that his/her obsession is unique, worse than others, and less treatable. When patients tell me this, I try to remind them that it’s not useful information. If it’s true that this or that obsession is something no one has ever obsessed about and we have to be extra special creative in constructing the treatment, it has no effect on the reality that the OCD is treatable and it’s treatable with CBT/ERP. Overly manualized treatment won’t take you very far. You have to construct the CBT to fit the OCD. So we don’t have to prove anything about how bad the obsession is. We just have to see where the behavior (physical or mental) is keeping this obsession afloat, target it, and change it.Mindfulness

Your first book, The Mindfulness Workbook for OCD, has practically been a runaway success in the OCD world. People love it. What inspired you to write it?

People have been incorporating mindfulness with CBT for a long time. ERP is about putting yourself in the presence of unwanted thoughts and practicing allowing them to be there without pushing them away. This naturally lends itself to mindfulness. When I was approached by New Harbinger to submit a proposal for an OCD book, The Mindfulness Workbook for OCD just made sense. I’m extremely grateful for the opportunity and love that I was able to reach so many OCD sufferers in a format like this. I was used to writing blogs and, well, really long-winded emails, so a book was quite the learning curve!

When you’ve gotten feedback on the book, is there any one section or technique that seems to resonate with your readers? 

Honestly the part I hear about the most is the preface to Chapter 1 in which I attempt to describe the OCD experience overall, what it’s like from the inside. Many self-help books have examples like “Bob’s story” and so on, but I wanted to have something that every reader with OCD would get, so I put one example and called it “Your story.” This is where I was thinking most personally about the material and I think that must resonate with readers. People also seem grateful for the specific descriptions of mental rituals, which has been scarce in OCD literature so far. Overall I think the book’s strongest element is that it looks at mindfulness not as an alternative or a stand-alone tool, but as something that can be used to enhance OCD treatment in harmony with cognitive therapy and ERP.FamilyMember

The best way to help someone through OCD feels so counterintuitive: Don’t reassure the person, and don’t make it easier for her to follow through on her compulsions. That’s why I think your second book, When a Family Member Has OCD, is such an important title. What advice do you give family members and other loved ones who are struggling to understand their role in the recovery process?

Family members and other loved ones have to walk a very tricky line between supporting the person with OCD that they care about and also recognizing that this person needs to do their own work to get better. I hope to drive the point home that you can make hard choices to help your family member with compassion and without cruelty. In “When a Family Member Has OCD,” I highlight four potential steps that can be taken to approach this. (1) Identify the compulsions, not the person, as the problem. (2) Invite collaboration on addressing the problem. (3) Interrupt the OCD cycle with permission (this is where “don’t reassure” comes in). (4) Integrate healthy behaviors through modeling non-OCD responses and embracing uncertainty of your own.

I have what is (sometimes controversially) referred to as pure O because I never performed the obvious outward compulsions like excessive hand-washing or checking and rechecking. Do you have a different treatment method for folks with pure O?

No. The treatment for OCD is CBT, a collection of strategies that includes cognitive restructuring, behavioral modification (ERP), and mindfulness skill development. Mental behaviors, though they may appear automatic and elusive, are nonetheless behaviors, which makes them available for targeting and treating. OCD sufferers tend to notice thoughts that others may be more likely to overlook or find unimpressive. How they address this “noticing” can come in many different forms. But I think it’s important that people recognize something like hand-washing is a physical behavior a person engages in when her mental rituals have failed to produce the relief she’s seeking. As a clinician, I might be able to get her to stop compulsively washing, but if I don’t also address the compulsive mental attempts to feel clean, relapse is inevitable.

Speaking of pure O, what do you think of the name for this type of OCD? Do you, for lack of a better word, believe in pure O?

As a clinician, it’s a truism that there is no “pure O.” There’s nothing pure about it.  You have obsessions, you do compulsions (seen or unseen), it causes disorder in your life and so, you have OCD. That is all. Some people believed for a period of time that there were people with obsessions who were not doing any compulsions and they called them “pure obsessionals” and now we know they were mistaken. In fact, when you consider that the very nature of an obsessive thought is that it is assessed as intrusive and unwanted, that initial assessment is in some ways a compulsion right there, an attempt to disown and dismiss the thought. So if you’re treating OCD and you’re using the term “pure O” to describe a manifestation of OCD, reasonable educated clinicians will frown on this. And for good reason. If you call it something other than OCD, your patients will expect some other kind of treatment, and may not do what they need to do to get better.

All this being said, there is a large and beautiful community of OCD sufferers communicating internationally on the internet. These sufferers have used social media to form online support groups and these groups naturally form sub-sections. These subsections reduce the sense of isolation that sufferers feel because they know the people they are communicating with think like they do. For those who engage in a lot of physically noticeable rituals, like washing, cleaning, arranging, and checking, there is the sense that people get it. It’s on TV, and it looks like what people call OCD when they use the word on TV. For people who struggle with primarily mental rituals and intrusive thoughts about violence, sexuality, relationships, religion, morality, and hyperawareness–what gets called “pure O”–there is a sense of being different from the “washers and checkers,” so to speak. There is this feeling of being poorly understood, overlooked, and often misdiagnosed. While I’m the last person to promote tribalism, this sense of togetherness under some name that identifies the lack of physical rituals feels important to the “pure O” sufferer. When I was seeking support on the Internet, I knew right off the top that I didn’t want to be in a digital room of people concerned with things I wasn’t concerned with. I wanted to be in the company of people who feel like they can’t stop thinking about terrible things all the time, people like me. Somehow I knew to seek out a site called “pure_o_ocd” even though I knew the name couldn’t possibly be true.

So does “pure O” exist?  Well, it depends who’s using the term and what they think it means. If it means OCD with mental rituals and it helps you to have a name that makes you feel less alone, then it exists. If it is some therapist’s marketing ploy or a way to describe a manifestation of OCD thought of as “pure” from compulsions, then no. As for other names that would work better, I haven’t been able to think of any. One day, when stigma around mental illness is a thing of the past, perhaps there won’t be a form of OCD that feels marginalized by society and there won’t be any drive to have a special name for it.

If you could share just one piece of advice with someone who has OCD, what would it be?

Don’t rely on one piece of advice. If you can access and afford to see an OCD specialist, listen to what they have to say and do the work, all of it, even if the work makes very little sense in the beginning because it’s such the opposite of what you want to do sometimes. If you can’t access a therapist, read several books on OCD, utilize a workbook, educate yourself about the disorder and teach yourself the tools to master it as best you can. Join a support group, follow an OCD blog, go to an IOCDF conference, connect with other OCD sufferers. Take your own advice and pool it together with the advice of people who know about OCD. You’re not alone so don’t be alone.