Owning My OCD

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.

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.

Treatment progress… in pictures

The following are “before” and “after” photos showing what life has been like for the last eight months under the control of OCD (before), and how life has changed since I entered the intensive treatment program (after).

To fully appreciate these pictures you have to realize a few things:

The “before” photos literally show what my apartment was like for approximately eight months. Most of the clutter you see did not move during that time. The pillows on the couch, the bags on the floor, etc. all stayed in roughly the same spot.
All the clutter you see in the “before” photos represents OCD land mines. OCD had marked each item as off limits. It was all contaminated and OCD told me I wasn’t allowed to move it, touch it, or sometimes even look at it. Imagine trying to live in a space like this where you have to dance around everything just to achieve basic functionality.
The “after” conditions were only fully achieved in the last two weeks, and I’ve been able to maintain this condition since.

Before (shoes blocking my entry)…