Happy Tuesday! For this installment of Tuesday Q&A we’re hearing from Jeff Bell, an amazing advocate, the author of Rewind, Replay, Repeat and When in Doubt, Make Belief, a board member and spokesperson for the International OCD Foundation, and an award-winning radio news broadcaster. Oh, and husband, father, and friend to many. He’ll tell you all about his tough love message–and it’s true, when it comes to OCD he does practice tough love–but he has the biggest, warmest heart. The emphasis is really on the love part of that equation.
Jeff is serious about spreading awareness about OCD, but he has a great sense of humor, so I started off our interview with a silly question: “We met at the OCD Conference last summer. Be honest. How intimidated were you by my star power?”
He laughed, of course. I mean come on, he is the true star.
A. I was really fortunate to have had the opportunity to keynote with Liz McIngvale in Houston in 2007, and after having done that I was offered an opportunity to get involved with the IOCDF. As soon as I sat down with this amazing group of people, the board of directors, I knew in an instant this was a project I wanted to be a part of. I was very fortunate to join the board and become a spokesperson, and it’s been incredibly rewarding ever since.
Q. Like so many of us with OCD, it took you years of struggle and pain before you were diagnosed. Even though you’d been seeing a therapist, you diagnosed yourself with OCD while she was on vacation.
A. That is correct. I like to say that I finally let my inner investigator and reporter take charge, because I am a journalist by trade. I realized after a couple of misdiagnoses that there was something missing, and I wanted to go about getting answers in the same way I would go about getting answers to a story I was investigating. So I started doing some research. I went to a bookstore. As the story goes, I was so fixated on what would happen if somebody saw me in the psychology section of a bookstore that I was prepared to come up with an elaborate ruse as to why I was actually there. I was really fortunate that I stumbled across a book called The Boy Who Couldn’t Stop Washing by Dr. Judith Rappaport, and fortunately for me, the very first story in that book is a man driving down a highway who becomes convinced that he’s run people over and turns his car around to go check to make sure that that’s not the case. My first reaction, honest to god, was I don’t remember writing a book! It was that uncanny. I didn’t realize that other people did these same things that I was doing. And I cannot imagine that as long as I live there will ever be a more powerful moment in my life, because in that moment, reading that book and reading the first few pages, I realized three things: One, I’m not the only person who does these seemingly crazy things, the compulsions. Two, the author has a name for the disorder. She calls it OCD, obsessive-compulsive disorder. And three, there’s a treatment. I did not know any of those three things before stumbling across that book.
Q. Your OCD manifested itself after you were married. Your wife, of course, wanted you to stop driving in circles, checking and rechecking to see whether you’d accidentally run someone over. What advice do you have for those who have family members with OCD? What is the best way to support them, without enabling them?
A. Man, that really is a tricky question, Alison, because it’s our human nature that we want to provide comfort to people. That makes things so challenging for a spouse or a parent or a loved one or a friend of someone dealing with OCD, who with the best of intentions wants to provide comfort when in fact we know that that can be very counterproductive in the OCD treatment world. My therapist was shrewd enough to bring Samantha, my wife, into the equation and help her understand when she was helping me and when she was actually unwittingly hurting me in terms of enabling my compulsions and getting in the way of my recovery. I think that was such an important component of my own treatment process. I’m really encouraged to hear more and more from clients and professionals that this is becoming a part of the process, bringing in loved ones., helping them understand the do’s and don’ts of OCD treatment support.
Q. After seeing several doctors who either misdiagnosed you or recommended the wrong kind of therapy for OCD, you found one who knew exactly what to do. She understood OCD and knew ERP was the right treatment. But you didn’t do the homework she assigned you. While you did waste some of her time, you really cheated yourself. What advice do you have for someone who’s struggling through ERP, for someone who wants to give up and give in to OCD?
A. Yeah, that is the crux of all of this and the crux of my own outreach. I have a very tough love message, Alison. There are no shortcuts. I can say that as somebody who spent years looking for them. Alas, I did not find them. I paid lip service to my therapy for far too long. I sat through my therapy sessions, I nodded my head when my therapist asked if I was doing the homework she’d assigned me, and yet for all intents and purposes I was spending a lot of money to go in and lie. In retrospect I question, well, why was I doing that? I think I was giving myself some credit for actually trying to do something proactive and yet I wasn’t willing to do the hard work that it took to get better. And I became bitter after a while. Why couldn’t this therapist fix me? Why couldn’t anybody fix me? And it was only when I started shifting my thinking and realizing that I had a huge role in this process, the most important role as far as I’m concerned. I needed to bring to the table the passion for getting better, the motivation for getting better, the willpower and the strength to do the treatment process. So, why wasn’t I doing it? Because this therapy is really, really hard, and what was lacking for me was something right in front of me that would remind me of what was at stake and what the motivation I needed was.
My message over the years has been pretty much a tough love message that we’re very fortunate in the OCD community to have a treatment process that works. ERP works. We know that, scientifically. But it’s only as effective as our ability to apply it in a meaningful way. And for me, what was missing was motivation. And so most of my outreach over the years has been helping people stay motivated through the treatment process. I talk about what I call greater good motivation, and this is a motivation technique that I learned. When I am able to shift my decision making in a constructive way that allows me to call out greater good goals, I’m able to willfully choose to sit with the anxiety–because that’s ultimately what we’re trying to do, sit with anxiety. And with the right motivation, we can willfully choose to sit with anxiety.
Q. You’ve stated that you found your peace with medication. What were your hesitations about taking medication, and what changed your mind?
A. I struggled, like so many people with OCD struggle with medication, in that I was afraid it was going to change me or take away that much more of my sense of control. OCD is so much about control. I was afraid. I couldn’t trust my judgment as is; was I going to be worse if I was on medication? Could I ever trust my judgment? I was making all kinds of excuses for not going on medication. An OCD sufferer’s world tends to be very black and white, and so for me there were two different kinds of people in the world: Somebody who didn’t need medication, and somebody who did. There was a part of me that thought if I were strong enough I wouldn’t need this medication. And I almost saw it as a sign of weakness. That was all part of the challenge I was facing with medication. I also remember having a conversation with my wife, when I said, “What if this changes who I am?” and she answered me in a very compassionate way. She said, “Is this who you want to be?” and she didn’t mean it to be a nasty comment; she was asking me to evaluate honestly if I was happy with who I was dealing with OCD the way I had been at that juncture. It was a really pointed question because I had to think, “No, I’m not happy with who I am.” And I very reluctantly agreed to try medication, and it made a huge difference for me. I realized it was not at all a sign of weakness, it was a sign of strength, it was a sign of courage, to be able to try something that was such a challenge for me to try. Once I did, I realized, oh my goodness, this stuff really makes a huge difference for me, mostly because it toned down, if you will, the intensity of the OCD to an extent that I was able to do the hard work of exposure therapy. Part of my message is that I believe we need to learn the tools afforded by exposure and response prevention therapy, that I don’t think there’s a real shortcut around that, and in my own experience I have found proper medication has allowed me to get a leg up on the ERP work and be that much more effective at it. It’s been an incredibly helpful tool for me.
Q. You’re so involved in the OCD community. Do you have any advice for young people who may want to advocate on a grassroots level?
A. I do indeed. I believe that we help ourselves by helping others. That’s sort of been my mantra through my OCD advocacy, and mental health advocacy in general. And I would like to encourage everyone to be able to learn that in fact is the case, and the way to learn that is to find ways to be of service in their community. I have learned that there is a special magic in being of service to people who are challenged by OCD, by challenges that we ourselves have been through. When there are opportunities for somebody with OCD to help other people with OCD, I would strongly encourage those people to take those opportunities, and we have those in our community. We can get involved with the IOCDF and be a part of the IOCDF community, we can offer to write stories and share our stories through the IOCDF newsletter.
I have a project that I’m involved with, and that I’m very excited about, called Project Hope Exchange. This is an opportunity for anybody, in 30 seconds’ time, to leave a message of encouragement for somebody else challenged by their own challenge, and so for an OCD sufferer, they could get involved with Project Hope Exchange and leave a 30-second message of hope for somebody else with OCD. They can do it anonymously or on a first-name basis only, but, at every turn, the concept is we help ourselves by helping others.
There’s something very powerful for people with OCD when they’re afforded an opportunity to help other people with OCD, and so by all means I would encourage people to take those opportunities, and that does not necessarily mean going public. That’s a question that I get a lot and I’m sure that you get a lot as well, Alison. We’ve shared our stories openly: Should everybody? And the answer is no. It’s a very individual question to be considered deeply by anybody considering sharing their story. I would encourage people to give that a lot of thought. There is something wonderful about speaking openly about our OCD, but it can be sharing with a few friends, or it can even be sharing an OCD story anonymously. It can just be quietly serving other people with OCD by getting involved and volunteering for an organization like the IOCDF.
Q. You and I have both written books about our personal experiences with OCD, as you just mentioned. Sometimes I still worry that I’ve said too much and I’ll regret this choice someday. Did you have moments during the book publishing process when you worried that you were making a mistake by revealing so many personal details about your life?
A. Oh, absolutely. That was a really scary juncture for me. Prior to the publication of my first book, I could probably count on one hand the people in my world who knew about my challenges with OCD. And then suddenly the entire world, or anyone who wanted to spend $13.95 or whatever, could read the book, and that was really sobering. I sometimes liken the whole process to this: I imagined when I published the book that I was going to open this door to a very scary place and turn on the lights to this new world of advocacy and be met by a bunch of monsters on the other side who were going to gobble me up, and instead I opened the door and turned on the lights and there were all these amazing people with their arms wide open saying, “Welcome.” And those were the other advocates out there. Those were the other people who forged a path for people like you and me, who had bravely shared their own stories. And not only in the OCD community, but in so many different adversities. I immediately became part of their community and learned through them. There’s a phenomenal community of folks out there who are doing first-person advocacy because of what they’ve been through, or what we refer to as adversity-driven advocacy. It’s been such a privilege to be part of that community.
Q. Speaking of, tell us more about the A2A Alliance.
A. Yes, thank you for asking! A big theme of my books has been this notion that I was able to help myself by helping others and that I identified what I call greater good goals that were bigger than my OCD, bigger than me, that allowed me to find a strength that I didn’t know I had. When I published the first book, and started publicly speaking about my OCD, I found that the more I was able to share my story, the more I was able to do something meaningful with what I’d been through, the stronger I was getting. And that led to my second book, which was more of an exploration of that whole process, of the greater good motivation, and this notion that we help ourselves by helping others. I started networking with all these amazing people, those very same people I referenced that are part of the advocacy community. I call them adversity-driven advocates, people who are doing what they’re doing because of what they’ve been through themselves. Cancer survivors reaching out to other cancer survivors, folks who have dealt with a form of mental illness reaching out and supporting others who have dealt with that form of mental illness, and right on down the line.
I became fascinated by this common thread that I had friends who were dealing with cancer or other physical ailments that were slightly different from my own challenge, that presented completely different challenges from my own with OCD, and yet we shared this common link that we were both finding great motivation by supporting other people in our respective adversity communities. I wanted to do something that would help facilitate the ability for people to tap into this notion that we help ourselves by helping others, and it sort of grew out of another challenge that I had, which was people coming to me and saying, “You know, I love what you’re doing in terms of advocacy, but I don’t wanna write a book, I’m not sure what to do. What can I do?” and I never had great answers for those people. That’s when I started playing with the notion of creating something that people could be a part of that would afford them opportunities to be advocates, even in a small-scale way. Part of that vision was to network a number of people across a variety of different adversities who could kind of lead the way.
Over the past three years, we have networked over 50 leading adversity-driven advocates across dozens of different adversities who are out there setting examples for people to follow of what it’s like to do this adversity-driven advocacy. Part of our commitment is providing pathways to advocacy for people who want to step into advocacy. We also work with leading researchers who are providing empirical support to this notion that we help ourselves by helping others, researchers at Harvard and UC Berkeley, for example, who are doing phenomenal research around altruism, around a sense of purpose, around compassion and empathy, and so forth.
Q. If you could offer just one piece of advice to someone with OCD, what would it be?
A. It sounds like a cliché, but I think this encapsulates everything I try to put out there: Choose to believe beyond your doubt.