Hi! I have OCD.

Hi. My name is Justin. I have OCD. Let’s talk about it. OCD, or Obsessive Compulsive Disorder, has four main components.

1. Obsessions. Obsessions are recurring unwanted or disturbing thoughts or images that cause anxiety.

2. Compulsions. Compulsions are repetitive behaviors that one engages in to alleviate the anxiety caused by the obsessions.

3. Avoidance. Suffers of OCD avoid situations that might trigger their obsessions or compulsions.

4. Disorder. When the obsessions, compulsions, and avoidance behaviors consume excessive time and energy and disrupt normal daily activities, they become disorderly.

When I was a child, every night before I went to bed I would incessantly flick the outside knob of my bedroom door before shutting it. This was to check to make sure it was unlocked. If the handle on the outside of the door turned that meant the door was unlocked. If it didn’t, however, that meant it was locked. If the door was locked, that meant that if there was a fire during the night, my parents wouldn’t be able to open the door to save me.

I recognize this now as an obsessive compulsive pattern. The obsession was the thought that I might die in a housefire. To alleviate the anxiety caused by this thought I engaged in the compulsive behavior of checking the door knob to make sure the door was unlocked.

Ways OCD Still Gets In The Way – Shopping

In no particular order here is one way OCD still gets in the way.

Shopping. This is probably one of the most stressful things for me right now. Why? OCD is working triple time to try to prevent new things from getting contaminated. And new things can get contaminated for me simply by thinking a triggering thought or triggering word during checkout, whether online or in person. Consequently, I’m canceling orders as soon as I make them (thanks to Amazon for making it super easy in the app) and then immediately reordering trying not to think that triggering thought while I make the next order. Rinse and repeat. The same thing over and over. I’ll do this dozens of times before either feeling like I’ve successfully made the order, or giving up in frustration. On websites that aren’t Amazon it’s not as easy to cancel orders, so consequently I’ll make multiple orders and end up with two, three, sometimes as many as five of the same thing. Then I have to return a bunch of things I don’t need. Even if I successfully make an order, sometimes it gets contaminated right away upon receiving it, before I even open it. This again can happen simply by thinking a triggering thought while touching it, or it accidentally bumps into or touches something else that’s already contaminated. Then the compulsion is to buy the thing again and return the one that’s contaminated. Here’s a recent example. My beard trimmer broke so I needed a new one. I ordered one on Amazon, making several attempts before I got the ordering process “right.” It arrived. I set in on the counter in the bathroom. Then later I was ruminating on a triggering thought and walked into the bathroom and my hand brushed against it. Boom. Contaminated. So I tried to make the order again. This time I had more trouble making the order, making and canceling the order several times because there were triggering thoughts that kept coming up. After getting super frustrated I ended up letting two of the orders go through thinking that it would be more difficult to pinpoint the exact trigger that has been attached to the items by increasing the number. So then I have three beard timers, but then the two new ones get sent in the same package and I think the package brushed against my leg or something when I carried it into my apartment. I don’t remember, but the two new ones got contaminated. So I ordered again, and that one got contaminated. So I ended up with four of the exact same beard trimmers that OCD has marked as contaminated and I “can’t” use. So, getting frustrated with the situation I go to Best Buy and get two more trimmers. If you’re keeping track that’s six beard trimmers for a grand total of about $350. Good news is I was able to settle on one and actually use it. I’ve returned the four from Amazon. I still have one more to return. Is exhausting. I mean hell, it’s exhausting just writing about it. I could explore a little more about what “contamination” means and feels like for me, but that might be an entirely different post. Suffice it to say, OCD makes shopping difficult and frustrating.

Walls of OCD

I’ve been feeling like the walls of OCD are closing in around me lately. My world feels like it’s once again getting smaller and smaller. I was feeling this way particularly strongly yesterday. Maybe it’s because Jason is out of town for business and I’ve been unable to escape to his house. This feeling is frustrating and discouraging. And exhausting.

Three Years

It’s been nearly 3 years since my last entry. Turns out life gets a little busy when you go back to work full time, when your boyfriend moves back in town, and when there’s a global pandemic. Lots of other things to distract me and give me excuses for not blogging (not that I was ever that great about blogging in the first place).

It’s a good time to start writing again though. I need to sort some things out. My OCD therapy has been a little aimless lately. It’s been what one of my former therapists calls whack-a-mole, where we seem to tackle whatever OCD has glommed onto that particular week and since my OCD is constantly evolving we end up focusing on all the new stuff and don’t seem to be getting to the central core, or in OCD-speak, we’re not climbing any higher on the exposure hierarchy.

Last session with Dr. Osborne we talked about this and whether or not our current approach is really the right approach. He posed a question: what is my end goal for treatment? Is it the eradication of all OCD? Is the current level of OCD in my life acceptable? Or do I want to aim for something in between? In other words, how much OCD am I OK with in my life? How much OCD is Jason OK with in our relationship? Frankly these are all questions that should have been guiding our treatment along the way, but after three plus years of therapy and the business of life, I think it’s understandable that we’ve lost a little of our focus. And you know what, that’s ok. I’m seizing this as a good opportunity to reassess and recommit to treatment goals.

So what’s the answer to the question? I’m not sure. It’s still an open question that I’m sorting through. There are definitely things in my life related to my OCD I’d like to see improved. OCD seems to be on an upswing and taking up more and more of my time. Don’t get me wrong, I’m still light years ahead of where I was three or four years ago. But I’m starting to see it inflate again. I’m starting to have some of those feelings of frustration and anger again that I thought had gone away. So, I don’t think the current level of OCD is what I want. Maintenance is not the end goal. But I don’t think it’s realistic to eradicate all OCD from my life. There are thought patterns that are so engrained that I don’t know if they will ever change. So I think the end goal is somewhere in between.

But where/what is that in between?That’s what I’m trying to suss out. So, I think my next posts will focus on where I’m at with my OCD, what ways OCD still controls my behavior, and some concrete goals I want to achieve.

National Coming Out Day

I posted this on Facebook today…

Since it’s #NationalComingOutDay here in the US, I thought I would come out today. Not as a gay man. I already did that. But as somebody with a mental health disorder.

National Coming Out Day celebrates coming out and encourages people to share their sexuality in authentic ways with family and friends. It was established with the express purpose of lessening the stigma and fears that many people who don’t know other openly gay people might experience.

I’ve felt strongly, as a person with a mental health disorder, that we need something similar for people like me. Chances are, you know somebody with a mental health disorder. Chances are they don’t talk about it much because of personal shame, because it’s difficult, or because they fear they will be judged. So, today, I am coming out with this purpose: to own my story and reduce the shame that I feel, to let other sufferers know it’s ok, and to fight stigma.

I have Obsessive Compulsive Disorder (OCD).

I’ve been on the obsessive-compulsive spectrum my whole life. Only in recent years has it become disorderly. I was diagnosed a few years ago, but I didn’t get appropriate treatment until this year. It started small but grew to the point of being untenable. It was over a year ago now where it really got out of hand and made my life hell. It consumed most hours of every day. I knew I needed specialized help. I found out my neighbor who is a child psychologist treats OCD, so I asked his advice and he put me in touch with a specialist. I’ve been meeting with the specialist since the beginning of this year. Because of how disruptive it was we decided it was a good idea for me to take leave from work. I spent twelve weeks in an intensive treatment program over the summer that was between fifteen and twenty hours of therapy a week. I finished the program nearly a month ago now and it has made a world of difference.

For those of you who think you don’t know somebody with a mental health disorder… you do!

For those of you who know somebody with mental health challenges, don’t assume you understand what they’re going through unless you’ve had the same mental health challenges. I can tell you that real OCD is a hellavalot more complicated than having to have an organized desk or closet. It is so much more disruptive than than that.

For those of you suffering from mental health challenges, get the right help! It took me a few years to finally get the right help for OCD. It’s important to talk to people you trust, but it’s also important to talk to a mental health professional.

Hey, even if you don’t suffer from a mental health challenge, I would still advocate for regular mental health counseling. We do regular checkups for our physical health; we ought to do it for our mental health too.

If anyone cares to know more, I’ve been blogging about my experience: owningmyocd.wordpress.com.

Journal

How my life has changed after an intensive treatment program for OCD

I’ve been reflecting over the past few weeks on how dramatically my life has changed since I started the IOP program. It seems like every day I’m reminded of something that used to be a “problem” that isn’t anymore.

First of all, a summary of treatment…

I first started OCD treatment in January of this year (2018). At that point my life patterns were untenable. The majority of my days were spent in compulsive behavior cycles. OCD had me in a very angry and frustrated place. I started once-a-week therapy sessions, but my OCD continued on a downward trend. Work was out of hand and preventing me from being able to focus on treatment. I eventually decided to take leave from work. This is when I first started to see marked improvements and a reverse in the trend of my OCD. My therapist and I decided I could see much more dramatic benefits if I were able to get into more immersive treatment. After some long debates with insurance, I finally started the Intensive Outpatient Program (IOP) in late June.

I spent 12 weeks in the program which consisted of 2 to 4 hours of active therapy sessions every weekday. Most of these sessions were administered in my home. I had a team of six therapists working with me.

The results I experienced were nothing short of miraculous. My primary therapist has commented several times that he thinks we accomplished in 12 weeks what would normally take 1.5 years or more in regular treatment. I personally estimate that I’ve experienced a 70% to 80% reduction in compulsive behaviors.

I finally ended the IOP program in mid September after we decided there wasn’t much more that could be resolved in the program. I’m now back to regular outpatient visits.

Now reflecting on what has changed…

The following are all behaviors that used to be, but are no more.

• Plastic utensils and paper plates. OCD used to prevented me from using my own utensils and plates. OCD also used to prevent me from eating food I touched with my hands.
• $30+ on cleaning supplies a week. OCD used to demand that I spend this much on cleaning supplies every week. This included 12 rolls of paper towels, a couple canisters is Lysol spray cleaner, 100+ Clorox cleaning wipes, etc.
• Cleaning carpet with Lysol spray. OCD used to want me to clean my carpets with Lysol spray… every inch of the carpet. It would demand that the carpet be dry before I could step on it again, so I would get trapped in my bathroom for 30+ minutes waiting.
• Cleaning surfaces with cleaning wipes. OCD used to make me clean surfaces when they got “contaminated.” My my phone got contaminated a lot. OCD demanded that the cleaning wipes be used in a certain way and if the OCD rules of using the wipes were broken, I had to start over with a new wipe. I went through a lot of wipes!
• Closing my eyes and sitting still on the bus. OCD used to make me close my eyes for almost my entire bus ride to and from work. It also demanded that I not bump into or touch anything during the bus ride.
• Limiting my vocabulary. OCD used to omit certain words, many of them totally benign for most people, from my dialogue with others. These words were “contaminated” and off limits. I picked my words carefully to avoid using the off-limits ones.
• Outside shoes not allowed in my apartment. OCD used to be hyper focused on my feet and where I stepped. It didn’t want “contamination” from the outside world brought into my living space.
• Logging out of computer at work precisely. OCD used to require that I very precisely shut down my computer. This meant adjusting the mouse so it was precisely in the middle of the x to close every program that was open. If this wasn’t done correctly (if my hand slipped while clicking, for example, I had to reopen and then attempt to close the program again. Logging out of the computer sometimes took me 15+ minutes.
• Only wearing certain clothes. OCD used to limit my wardrobe to a few select items. I had 3 or 4 shirts and about 2 pairs of pants that it would allow me to wear. Everything else was “contaminated.”
• Not doing basic household chores. OCD used to prevent me from doing basic housekeeping like folding and putting away laundry, opening mail, vacuuming, taking out the trash and recycling, washing my dishes, etc. consequently my apartment was a total mess.

This list is certainly not exhaustive, but it gives a sense of how the IOP program has changed my life for the better.

What’s Peggy been up to?

Well, in July and August during IOP Peggy first got really mad and dug in her heels. But then after I did some really hard exposures and some of the things that she had been telling me not to do for a very long time (this was scary for both me and Peggy), she started to feel threatened because she was losing her job.

In August we went to Camp DCO and she got really pissed off because she knew we were going to do some things at camp that she really really didn’t want to do. So right before camp she threw a fit and started screaming so loud it was difficult to ignore her. It almost made me miss camp. But despite her fit, I knew how important it was for me to be at DCO, so I pushed through and went anyway. She was still pretty angry at camp, but we launched into several physically and mentally demanding activities (climbing on top of telephone poles, solving puzzles, etc. … with some exposure exercises mixed in between) and she soon calmed down. In the end we did the things at camp that Peggy didn’t want us to do, so… victory I guess.

If I don’t sound overly enthusiastic about this relatively huge victory it’s because Peggy still hasn’t shut up. Don’t get me wrong, we have come a long way and Peggy isn’t making my life anywhere near as difficult as she once was, but she still insists on doing things her way, and even though I am now ignoring much of what she says she is consistently trying to change the rules or even reframe old rules or demands in new packages.

Over the last month and a half my life has been restored to normal-ish. Peggy and I reached a point where there wasn’t much more to be accomplished in IOP so we ended about three weeks ago. I have been ramping back up at work and Peggy has followed, though again, she’s not nearly as disruptive as she was before IOP. I go to the gym and Peggy is there. I go to the store and Peggy shows up. I think what she’s doing now when she shows up is trying to fill the voids with new things or old things in new packages. The difference now is that I’m able to push back against Peggy in a way that I wasn’t before IOP. I’m often engaging in active practices to take her power away.

Peggy

From here on and henceforth my OCD shall be called Peggy.

I’ve mentioned this before, but my neighbor is a child psychologist who treats OCD. He is a friend I can be open with about my OCD experience and we frequently get together to have dinner and chat.

He’s mentioned that one thing he has his clients do is give a name to their OCD as a way to help them externalize and turn OCD into an enemy. It makes it easier to talk to kids about OCD. “Oh, let’s call your OCD Tom. Tom tells you what he thinks will make you feel better. He can be very convincing, but he’s lying.”

He recently told me about one of his clients who decided to name her OCD Peggy, who apparently is a character from the musical Hamilton (which I have not yet seen). I thought I should also name my OCD, but while I was contemplating names and before I decided on a name I just started calling my OCD Peggy too. So I think Peggy is sticking.

I’m going to OCD Camp!

It’s official, I’ve turned in my check and secured my spot at Camp DCO (so-called to mess with people’s OCD). This is the camp that gave birth to the Extreme OCD Camp BBC special.

Extreme OCD Camp was unique in that it brought people to Seattle all the way from the U.K. for intensive treatment. From what I understand both the therapy team and BBC had a say in who was selected for the camp. The therapy team wanted to bring people who needed the most help. BBC wanted to send people who had the most interesting stories. They also wanted to maximize the time they had and opted for a longer than normal 9-day trip that included a bit of a wilderness adventure.

Camp DCO was started by the two therapists featured in the BBC special about ten years ago. It is typically attended by eight to ten locals from the Seattle area and lasts two and a half days. There is no long trek, though I believe it’s held at the same campground with the ropes course that is featured in the documentary. Every year they alternate between teens and adults. This year happens to be an adult year and it seems like a once in a lifetime opportunity that I can’t pass up.

So, I’m going to camp!

Exhausted

Yesterday was a frustrating day and full of mental fatigue. A bunch of triggers were coming up and they seemed to swing back and forth between categories of obsessions. It’s exhausting to have one trigger come up and to be in the mental space of trying to figure out how to do the response prevention part of ERP, and then almost immediately have another trigger come up and have to pivot to try to figure out how to do the same thing for that trigger. And then again and again. It creates a mental fog. Then when something new and unexpected comes up it feels bigger and more difficult.

This is what happened in my session yesterday. I had been pushing back against OCD triggers all day and was in a general state of mental fog. Then in session we were doing an exposure exercise watching video on YouTube and there was an unexpected image in the video that was disturbing to me. In that moment it felt huge. This happened in the last ten minutes of session and I told Dr. Ravid it was going to be difficult to not ritualize when I got home. But I didn’t. I went home. I went to the gym. I met a friend for dinner. I made it all the way through without ritualizing to neutralize the anxiety from the new trigger that came up in session.

It would have been great if I could have ended the day on that note, but later there was another trigger related to a different exposure to something new brought up by my therapist team earlier in the week. Before I knew it I had been through an entire pack of cleaning wipes and then some, attempting to neutralize that trigger. It was so frustrating because I couldn’t get that ritual right. That frustration turned to anger directed at my therapist team for exposing me to things that I was perfectly fine not knowing existed. My ignorance was bliss. But now I had new disturbing images and concepts that were swimming around in my head because of my therapist team.

I do understand that the exposure work we are doing is in the service of taking the power away from my OCD and making me better, but it doesn’t change the fact that it’s frustrating and exhausting.