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.

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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.

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:

  1. 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.
  2. 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.
  3. 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)…

After (clear entry)…

Before (chapped hands from excessive hand washing)…

After (healthy supple hands!)…

Before…

After…

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After…

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After…

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After…

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After…

I’m back

I’ve been mostly silent for the past two weeks. I’ve been traveling, heavily focused on treatment, and even started transitioning back into work.

Travel

This past weekend I was in Utah for the annual Affirmation conference. Affirmation is a support organization for LGBTQ+ Mormons. I’ve been involved on the leadership team and even chaired this conference in the past. I have many dear friends I’ve made through my involvement and I wouldn’t miss the opportunity to meet up with all of them, even if it meant slogging through some OCD crap.

As I’ve mentioned in the past, travel has been particularly difficult. My trip over the Holidays to London took me 18+ cumulative hours to pack and prepare for. Then whilst (see what I did there😉) I was in London I struggled with a major upswing in obsessive-compulsive behaviors. I brought home a ton of OCD baggage and literally did not completely unpack my baggage (both emotional and actual baggage) until about two weeks ago. That’s six months to completely unpack my bags!

There are a few reasons travel has been difficult. First, it interrupts my OCD routines and rituals. Some of those rituals are difficult to take across the world with me. Second, there is risk in traveling that my OCD has difficulty tolerating. At home my OCD knows where I can go to get the things it needs to function. But in other parts of the world stores, supplies, and foods are all different from what my OCD is used to. Will I be able to get cleaning wipes that allow me to clean my hands the way OCD wants me to? Will I be able to get the foods OCD wants me to eat? I also have a pattern of picking up new OCD baggage on trips. Almost every trip over the last three years I’ve come home with either a new obsession or a new or solidified compulsive behavior. Lastly, I think that the safety learning that I’ve accomplished so far in therapy is relatively confined to my everyday environment (my apartment, my neighborhood, and my city). It hasn’t yet been universally learned and doesn’t necessarily apply in new places like Utah (if that makes any sense).

So, this trip to Utah I was a little nervous, even though I’ve done a lot of work on OCD in the last few months and made a lot of progress. I’m happy to say that packing wasn’t nearly as strenuous. It only took me about two hours. Getting out of the house to the airport was a little tricky though. There were a handful of triggers as I was trying to leave and I couldn’t get the hand cleaning ritual “right.” This added approximately 45 minutes and I ended up getting to my gate at the airport about ten minutes before they closed it.

Once in Utah I was still a little on edge and there were several OCD triggers encountered. Because I was out at the conference and visiting friends for most of the day without the ability to ritualize, there was a surge of compulsive activity in the evenings when I got back to the friend’s house where I was staying. But, I think just being able to travel in the first place was a win so I wasn’t too discouraged.

While in Utah I was able to open up to a couple friends about my OCD struggles. I had a really deep and meaningful conversation with one of my college roommates. His wife has battled eating disorders for 15+ years of marriage and it was interesting to compare experiences. I found his experience with his wife to be very similar to my own experience. She is very much engaged in compulsive behaviors that bring her relief from anxiety and allow her to feel in control. Is what we experience really that different from any other person with addictive or compulsive tendencies? We talked about struggles with insurance, intensive treatment programs, and the challenges of mental health care. It was a great chance to talk and connect in a meaningful way. I was also able to open up to another friend over dinner and again make meaningful connection. These conversations also allowed me to find more self acceptance through the acceptance of others and it helped me realize the value in telling my story.

… I’ll follow up with additional posts about the general progress of treatment and the transition back to work.

Encouragement

I just wanted to share some of the nice notes my therapy team has been sending me.

From Dr. Tininenko after our visit last Thursday:

HI Justin,

I really wanted to call this afternoon, but didn’t know if it would feel helpful or not. I thought to be safe, I’d have [Dr. Osborne] check in instead 🙂 Save this email until tomorrow if you need a break!

I just have to say that you have been doing such incredible work. Over the past 4 days, you have reclaimed spaces and have done things that you have never before attempted or have not done for a very long time. I am inspired and in awe of your commitment and your outright bravery at every step. It’s really exhausting to do this work and get up and do it yet again, yet you’re doing it and continuing to do it. I’m being very honest when I say that there are so very few people I work with who jump right in to the extent that you have from day #1.

I want to make sure that you know that in case you’re feeling any bit of reluctance, defeat or frustration because OCD jumped in at the end. I know it’s hard not to have the wave of really unpleasant emotions, especially after such a long day of fighting for every inch of your apartment. It’s the way that OCD treatment goes. Sometimes OCD jumps in and in the end, that’s ok. That’s just what makes it so darn hard. What you did today- sitting with it, even when fear spiked so fast (and you probably just wanted to run out of there!), is exactly what it takes to really gain ground on ocd. It’s the hardest part and you did it. As far as I’m concerned, that’s a humongous win that will definitely carry you forward.

I hope that you are feeling some pride in the work that you did today. You removed so many stickies! It was truly amazing!

And from Dr. Osborne the following day:

Hi Justin

Just wanted to let you know that I hope your session today goes as well as it can given how hard yesterday was. In talking with the IOP team this morning they indicated that virtually every IOP clients has an experience during the first 1-2 weeks of treatment in which things feel very hard and overwhelming, and that is because doing IOP is so much work and is pushing back on OCD in such a big way.

You have made really incredible gains this week. And I know that you are likely very tired and frustrated about how triggered you were yesterday. For years your OCD has been telling you things that have turned out not to be true – that doing all the avoidance and rituals to avoid feeling anxious will make your life better. In reality, it has only made life worse. So, when your OCD tries to capitalize on what happened yesterday and convince you that this is all too risky, try to keep this in mind. It’s never been right before, so it is probably not right now. If you can keep pushing, even when you are anxious, you will get better. It is not easy, and there will be ups and downs (even during treatment sessions), but you can win. I’m here if you need to touch base at all this weekend.

And a follow up text from Dr. Osborne after the session on the same day.

Hi Justin. I got your email and I am so happy to hear how well you felt the session went. I saw [Dr. Coco] when she got back to the office and said you did an awesome job. She said you were cooking pasta when she left. I was so happy for you and proud of you it made me tear up 🙂

And a text after today’s session:

Hi Justin. Just debriefing with [Dr. Ravid] and he said you had a really hard session and that you did an incredible job! You have made unbelievable gains in the last 2 weeks. I am sure ocd is pushing back right about now, just know you are winning and are going to keep winning. SO proud of you!!!

🙂

IOP – jumping out of an airplane

I have absolutely no desire to ever ever go skydiving. The thought of jumping out of a plane is terrifying to me; the free fall and not knowing for sure whether or not your parachute is going to open. Well, today I jumped out of a plane… metaphorically speaking. I just wrapped up my IOP session with Dr. Ravid and we tackled a doozy.

The IOP team and I have been inching closer and closer to intentionally spreading higher and higher levels of contamination in my apartment. As a reminder, “contamination” for me has nothing to do with germs or disease, but rather has to do with the spread of unwanted thoughts. My OCD links unwanted thoughts to physical objects. There are a handful of words that are highly triggering for my OCD. We have been working on exposure to these words outside of my apartment. That literally involves writing, saying, and listening to the words over and over and over again. We first did this at the clinic. Then when IOP started we did exposure to lower level words in my apartment. Some of the words that are more triggering for my OCD felt too difficult to start in my apartment. So what we did instead was exposure to these words while walking around my neighborhood.

Yesterday we started to bring some of these words into my apartment, but in a controlled way. It was mostly just listening to a recording we had made of the more difficult words. Today with Dr. Ravid we started with some of the same exposure. These words were in the range of 6 to 7 on the SUDs scale (see earlier posts for definition of SUDs scale… or just google it). The plan was to then step down a couple notches on the scale and intentionally spread the contamination of some lower level words in the range of a 4 on the SUDs scale. The way this is done is by touching as much as I can in my apartment while thinking or saying the level 4 words. I spread it around with my feet on the carpet. I rub my hands on my couch and walls. I even contaminate my self with the words by rubbing my hands on the clothing I’m wearing. While doing this I imagine the possibility that these level 4 thoughts could get linked to what I’m touching and that every time I look at them or touch them I will think that uncomfortable thought.

We had just barely started into this exposure work when I was triggered by something that put my SUDs right back up in the 6 to 7 range. My OCD impulse was to wash my hands and decontaminate. But a key component of the type of therapy I’m doing (ERP) is response prevention; that is, refraining from engaging in the compulsive behavior. I knew we were eventually heading to the point of intentionally spreading the 6 and 7 level contamination. Since I knew that was coming and and in that moment I was already feeling in that range, we decided to intentionally spread it. We started in the kitchen and spread it everywhere we could on the floor with our feet. We then moved on to the rest of the house and basically covered every square inch of the floor that we could by rubbing our feet everywhere, all the while imagining that we were spreading that high level contamination.

This was the first time I intentionally spread something that is this high on my list. It felt like jumping out of that airplane not knowing if the parachute is going to open. I got oddly emotional. I was facing one of my biggest fears head on. I was doing the very thing that OCD had tried so desperately to prevent from happening. I was doing it by choice. The tears started to well up halfway through, and when I finished I collapsed on my couch and let the tears flow freely.

I’m still free falling, not knowing if my parachute is going to open, though I have a great group of experienced therapists working with me and jumping in tandem. I’m putting my trust in them and my faith in myself that there will be a safe landing and that I will once again find solid ground beneath my feet.

Productive sucking… because, screw you OCD!

Ok, today’s IOP went really well. Dr. Coco and Ashley were fantastic. We were able to openly talk and learn from the last session, make additional progress, and hit some milestones, and I have some very specific takeaways from the session.

The first thing that really helped to put me at ease (aside from the friendly and gentle demeanor of my visitors) was a little get-to-know-you conversation. After all, this was not only the first time having them in my house, but also the first time I had actually met both of them. Both Dr. Coco and Ashley gave me a bit of personal history, which I really appreciated. It helped me to see them as real people rather than just clinicians here to run me through exercises. Ashley and I bonded over experiences traveling to India. Then I was able to tell them a bit of my story.

They then summarized their understanding of how my OCD operates, which was on point, and the work that I have done so far. They summarized their understanding of what happened in the last session and then we planned together what to do today to move forward. We decided it was a good idea to repeat some of the exercises from last session to reinforce the safety learning.

One of the exercises involved simply walking by and being in a space in my apartment that OCD had made off limits. As I did this we listened to uncertainty scripts. Almost immediately there were two small-to-medium triggers. The first was that Ashley set my phone down on my table in a spot that was “contaminated” and I asked her if she could not put the phone there. Dr. Coco did an excellent job of seizing that opportunity to dig a little deeper and we were able to, in that moment, change course and do immediate exposure to that trigger. We were able to take address it rather quickly and it diverted us for less than five minutes. When I went back to the other exercise, there was another trigger where I stepped on a crumb on the carpet unexpectedly. I think Dr. Coco’s response to the first trigger gave me permission to talk about the second one and work through it in real time. I was able to verbalize my fears in the moment and analyze and talk through my choices for responding to the trigger and the reasons for responding in different ways. I noticed that when I have an OCD response to a trigger that pushing through and taking the next step is often the most difficult part. Stepping on the crumb set off my OCD alarms, and literally taking that next step without doing anything about it was the hardest part. As I slowly began to take baby steps it really did get progressively easier and OCD slowly relinquished. It was slow and it still hasn’t totally gone away. But it happened. So that’s takeaway number one: the first step is often the most difficult.

Takeaway number two was that social interaction and laughter really help to ease the tension. Throughout the session we were chatting and laughing and it helped me to tolerate the discomfort of the exposure. I think the ultimate goal of exposure is to experience the discomfort that comes with uncertainty, but laughter in this case helped to sweeten and ease the experience (thinking of Hannah Gadsby’s Nanette special right now). It’s also helpful as a tool to help break through into new territory.

Takeaway number three was to harness the emotions that will empower me to fight back against OCD. Dr. Coco again did an excellent job of coaching me through this. In the moments of exposure where my impulse was to ritualize, she would ask me what reasons there were for not ritualizing. The main reasons of course are because OCD has taken over my life and to fight back against OCD and reclaim what OCD has taken away. “What reason do you have not to engage in ritual?” Dr. Coco would ask. “Because, screw you OCD.” Dr. Coco mentioned another client who says that both OCD and exposure therapy suck, but that you might as well do the kind of sucking that is productive. So, I will try to do the productive kind of sucking.

Dr. Coco had to leave, but Ashley was able to stick around for an extra 90 minutes. We used that time to achieve another milestone: cooking a meal in my kitchen. We cooked ravioli with marinara, a meal that didn’t actually require me to touch the food with my hands (that will be future exposure). Then we ate the raviolis out of my bowls using real utensils, and then cleaned all the dishes and loaded them into the dishwasher. It’s been five or six months since I cooked a meal and used my dishes. So… win!

So, I wrapped up today with a boost in confidence and feeling like we accomplished a lot.