On March 21, I shared a link to IntrusiveThoughts.org on my author Facebook page and said, “I am so excited about this new website!” And I really was. Not only was it all about the intrusive thoughts that plague those of us with OCD, it mentioned all the secret shameful ones like pedophilia and harm, and — and! — it’s gorgeous. Looks shouldn’t matter, but let’s face it: Important, life-saving information served up in an attractive package certainly doesn’t hurt.
Aaron Harvey is the man behind the site, and I’m honored to host him today. We met in person at the OCD Conference in July (haven’t I told you like a million times that you need to go to the conference?), and he was warm, smart, funny, and open. He’s been talking about things many of us are still keeping to ourselves. But Aaron doesn’t want anyone else to hurt the way he hurt for so long, and that’s what keeps him talking and what inspired him to start IntrusiveThoughts.org. Thank you, Aaron, for being here today and for everything you’ve done to help people with OCD.
After suffering in silence and confusion for decades, you finally realized that your disturbing intrusive thoughts were symptoms of OCD, a treatable disorder. Unfortunately, you’re not alone in this — too many people go undiagnosed and untreated for too long. What sets you apart, though, is that you almost immediately undertook an ambitious project to spread awareness so no one else would have to suffer as long as you had. Where did your idea for IntrusiveThoughts.org come from?
I lived silently in fear for two decades unaware that I had a mental disorder. In March 2014, my mental health had really deteriorated. So I finally got the strength to search “violent thoughts” online. Within seconds, I read a list of symptoms for Pure O. My heart was on the floor. I couldn’t believe what I was reading. Every symptom. Check. Check. Check. In that brief moment, I was relieved and terrified at the same time. What did this mean? The symptom list confirmed to me that I was an animal. As I continued my search, I found an article on the Guardian. The author, Rose Bretecher, humanized the suffering of OCD in an absolutely humble, honest, and beautiful way.
For the next six months, I would only share my disorder with a few close friends and family. And I could only do it by sending them the link and saying, this is what I’ve been dealing with since a child. I had to read it verbatim to my parents because I was too emotional to use my own words.
That’s when I knew I needed to build something that helped to humanize the experience. And two years to the day following my Google search, I launched IntrusiveThoughts.org. I wanted to find people who might be suffering from OCD, but are unaware, just like me. I wanted to build a site that brought comfort to people seeking their symptoms, and push them on a path to treatment, offsite.
My goal was simple. Save one life. Prevent one person from self-medicating. Reach a younger audience to help them live a normal life — one that, sadly and admittedly, I did not have.
If you could pinpoint one thing you want IntrusiveThoughts.org visitors to walk away with, what would that be — and does it depend on who the visitor is?
I want sufferers to realize they have a chance at happiness. I want sufferers and their friends and families to be able to relate to the disorder, understand its brevity, and utilize it as a jumping off point for treatment. You are not alone. And you are no more likely than anyone else to act on your thoughts.
You and I both struggled with taboo obsessions, those sticky intrusive thoughts that are really embarrassing and difficult to talk about. But you were candid and brave much sooner after diagnosis than I was. How did you find the courage to tell wide-reaching outlets such as Self, Cosmopolitan, and Fast Company about your violent and sexual thoughts? And what kind of response have you gotten from readers, friends, and family?
I remember the night before the site launched, my tell-all article was queued up to launch in FastCompany.com and soon my family, friends, clients and employees would know what’s in my head. That night, I really started to question what I was doing. And if it was worth it or not. But ultimately, I laddered back up to my mission to build awareness and advocacy. With my role in the advertising industry, I have a unique opportunity to use my skills to spread that message. So I basically said, fuck it. And let Fast Co know to run the article.
As I started to receive more inquiries about more taboo topics like sex, it certainly was getting even more personal and invasive. But ultimately, I have to ladder back up to my mission — build awareness and advocacy. Sex is a huge part of life. And sex can be an extreme challenge for people with OCD. It’s an imperative that we discuss these taboo topics to help those suffering know that they are not alone, there are tips and tricks to improve your sexual experiences, and you can have an open dialogue with your partner.
I mentioned that you were diagnosed decades into your struggle with OCD. What’s your first memory of an obsession or a compulsion, and what finally tipped you off to the idea that what you had been going through was OCD?
In hindsight, I see there were so many now! But, the first intrusive thought I really struggled with was when I would pray. I grew up in a Christian household, and at night, at 12 or 13, I would say the Lord’s Prayer as I went to sleep. As I reached the end of the prayer, I would have an intrusive thought of my cumming on Jesus’ face. Shocked and horrified, I would beg for forgiveness and repeat the prayer until I could make it all the way through. I remember each time I would get close to the end of the prayer I would be like “OK, almost there,” and then sure enough, I would cum on Jesus’ face.
From there, the sexually related OCD thoughts really took off. I thought I was a pedophile at 13.
A question I often get is “How did you tell your family about your diagnosis?” So I’ll pose this to you as well. Do you have any tips to share with my readers?
I flew to Florida to see my family. We sat on the back porch — Mom, Dad, and I. I pulled up my phone and said, hey, I’ve been dealing with something for a long time. I could see the mood got serious. I was choking up a bit trying to tell them. So I pulled up Rose’s article in the Guardian, and I started to read it line by line. As I hit a particular tough spot, I started to lose it a bit. It wasn’t until I read the entire article that I could start to tell them about how my experiences are different than Rose’s experiences. I told them not to mention it to me or ask me how I’m doing because it’ll just make it worse. In hindsight, I really needed to be more educated.
The home page of IntrusiveThoughts.org is supposed to do one thing: sum up the most important notes of the disorder in a way that is serious but digestible. I hope people who are nervous to tell their loved ones can say, hey, check out this link, this is what I think I’m going through.
In your interview with Cosmopolitan, you said, “My experience with OCD is that your intrusive thoughts will try to disrupt the most beautiful moments in your life.” I always say OCD is tricky, and it’s a bastard, too: You had upsetting, graphic sexual and violent thoughts while you had sex with your ex-wife, and this took a toll on your relationship. What advice do you have for someone with similar obsessions who may be avoiding intimacy because of them?
Transparency. That’s the most important thing. Because of my distance due to fears of intrusive thoughts, my ex thought there was something wrong with her. It led her down a depressive cycle. It’s really important to share these thoughts with your partner. Beyond that, there are tips and tricks that I’ve learned that might help people. Mindfulness. Focus on the breath. When thoughts get disruptive and start to avalanche, pull your partner closer, go slow, engage in foreplay, live in the moment, don’t worry about the end result. Mindfulness is really key to being able to enjoy a sexual experience. To let the thoughts pass and stay in the present.
So many people with OCD unknowingly undergo the wrong treatment for OCD, usually “talk” therapy where they’re asked to delve into their childhood to determine where this mess all came from. You’re currently practicing exposure and response prevention (ERP) with a therapist. How did you find someone qualified to help you tackle your OCD symptoms, and how did you determine that they were indeed qualified?
The sad part is, you really don’t know. Sure, you can read someone’s credentials on a website where they state “OCD” as part of their specialty, but you really don’t know. You must be educated first. You are the CEO of your recovery. Not some doctor or therapist.
All that said, you do have a few starting points as Dr. Phillipson points out in the OCD3 video series. (1) Work with a behavioral psychologist. (2) Work with someone who specializes in OCD, someone with many cases under their belt, a track record, not a generalist. (3) Interview them to make sure they speak intelligently about OCD, OCD treatment, and ERP. Again, this step requires you to be educated first.
IOCDF has a directory of OCD specialists in the US.
Also, it’s important to note that many people suffering from OCD may also be suffering from depression, generalized anxiety disorder, addiction, body dysmorphia, etc. It’s critical that your behavioral psychologist actually understands these elements and how to build a treatment plan for you.
How are you doing now, a few years after you were diagnosed? I often tell people that the goal of treatment shouldn’t be to never, ever have a bad thought again, because it’s simply not realistic. Do you still experience intrusive thoughts?
I struggle every day. Some days worse than others. No day is easy. I have pretty severe depression as a result of two decades of self-hatred. I have very little self-worth. There are no accomplishments that help to prove me wrong — whether it’s owning an agency, starting a non-profit, etc. So my treatment is very challenging, because when you have harm OCD where you’re plagued with constant thoughts of self-harm, and you also have depression, the combination can be very dangerous.
If you could share just one piece of advice with others with OCD, what would it be?
Let people in on your secret.