How Exposure Response Prevention Therapy Has Changed My Family's Life
If you struggle with obsessive-compulsive disorder (OCD), the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741. To find help, visit the International OCD Foundation’s website.
“I can’t do it,” he said, eyes blinking, his head twitching, almost like he was trying to dodge the rapid-fire of his thoughts.
“I know this is really hard for you and that you are terrified right now, but I know you can do this,” I said, trying to sound as comforting as possible.
“I can’t, what if it really is? What if she gets sick?” He whispered the last part because saying it out loud was almost as terrifying as the thoughts and images being conjured in his head.
“Chris,” I said, trying not to think about what time it was, trying to temper my frustration, “what happens when you listen to it — no matter how terrifying and convincing it is?”
“It gets worse,” he said, head down, eyes closed, just trying to hold on.
“And what happens when you do the opposite of what it says?” I am gritting my teeth at this point.
“I get better,” he answers, in a barely audible whisper.
“So what do you have to do?” I ask, trying not to show the impatience in my voice.
With that question Chris moves forward, jerking, hesitating, retreating, then moving forward again — a hectic and anguished dance that represents the battle raging in his head.
This scenario is one that plays out often in our house. My husband Chris has obsessive-compulsive disorder, and at one point, it completely consumed his life. Today, his OCD is well managed and his symptoms are often “sub-clinical,” meaning they take up less than an hour of his day. Other days, when he is tired, or getting ready to travel for work, or his stress levels are increased, he struggles to keep his OCD in check. On these days, Chris has to painstakingly use the skills and tools he has learned from exposure response prevention (ERP) to try to maintain some freedom from his OCD. On these days, he often needs a lot of help to regain control over the beast.
A little bit about the subject of Chris’s OCD, as this plays into our experience with ERP as a family. Chris’s biggest trigger is our nearly 6-year-old daughter, Syd. His OCD is convinced if Chris is not vigilant enough, he will be responsible for making her sick and killing her. Anything that in any way could possibly pose as a contamination risk can send his OCD reeling, and the moral culpability of being responsible is the cherry on top. For a while his OCD was focused on the potential of contracting HIV and infecting our daughter, but that has morphed into salmonella, E. coli, herpes, Lyme disease (and ticks), lead poisoning, chemical poisoning and more.
When Chris was at his worst in the late fall of 2018, before we discovered ERP, he could not stand to be in the same house as our daughter because the fear of making her sick was so overwhelming and panic inducing. Chris is an amazing father; he has been since the day Syd was born. Our daughter absolutely adores him. Syd loves to laugh and to make others laugh, traits she has gotten from Chris. Despite this, Chris’s OCD constantly tells him he is a terrible father for not being vigilant enough, despite hours of hand-washing or avoiding. Or it tells him he is increasing the risk of harm to her life by doing a compulsion or ritual. This last part is a more recent “theme” of his OCD-– a sort of “damned if you do, damned if you don’t” scenario. If Chris doesn’t do a compulsion, his OCD says he is increasing the danger to Syd, yet if he does a compulsion, he has somehow increased the danger by being “too weak.” Fun, right?
I want to expose what exposure response prevention (ERP) therapy is like, outside of a therapist’s office and inside of our daily lives. There is a serious gap in time from diagnosis of OCD and those struggling receiving the evidence-based treatment to help them get better. I won’t go too much into this, you can check out my previous post, “An Open Letter to Mental Health Providers” for more of our story and my thoughts on this. I hope by sharing our experiences with ERP we can help bring awareness and demystify the treatment that is actually helping people who struggle with OCD around the globe regain their lives.
In this post, I will discuss what exposures were like for us in the beginning, what they are like now (10 months later) and how we have handled including our daughter in an age-appropriate way, without completely disrupting her daily life. In future posts, I will discuss what it is like (physically and emotionally) to be the spouse, caretaker and exposure coach for someone with OCD. I will discuss our newest adventure with exposure — what it is like to be a parent and exposure coach to our daughter who struggles with generalized anxiety and is starting to show signs of intrusive thoughts. To quote one of my favorite podcasts (“The OCD Stories” with Stuart Ralph), “without further ado,” let’s dive into our daily life with ERP.
It all began with a hat — a plain, gray, fleece hat. We had returned to Dr. B’s office for our second visit and while she had not originally planned to get into exposures just yet, Chris was so consumed by his fear of contamination, everything in his presence was an exposure. Dr. B asked Chris if he could sit on the couch — during our first visit he stood for two hours unable to look at or touch anything. Chris hesitantly sat down on the edge of the couch, unable to sit back or take off his coat. In a way, our new life of exposure started with that couch.
I’m not sure how the gray fleece hat became contaminated and it doesn’t really matter. OCD doesn’t need rational thought and doesn’t take into consideration the laws of physics (more on this later), yet it had convinced its hostage an innocent, soft, gray fleece hat had become an instrument of death. Chris’s exposure was to simply hold the hat. At first, he could only get himself to hold it with his fingertips. He sat there, consumed with fear and anxiety, staring at the hat or with his eyes closed. Dr. B talked with him, distracting him from the discomfort slightly. She started to go into the details of what he was doing and more importantly why.
“You are doing great, Chris. We are just going to sit here and help you get used to what an exposure feels like. What would you say your anxiety is right now on a scale of 1-10?”
“Probably a 9,” Chris answered, his head twitching, eyes closed, his voice a soft whisper.
“You are doing great,” Dr. B repeated. “If you remember, I explained last time about how we are going to face your fear and your triggers, without performing any of your usual compulsions or rituals. When we do this, your anxiety will go up a little at first, which it has done here. Now we are just going to sit and chat. I am going to distract you a little at first, but eventually we don’t want distraction, we just want you to be able to tolerate the discomfort. The anxiety will come down over time, even without you doing a compulsion. We are going to re-train your brain that you do not have to do compulsions in order to bring your anxiety down.”
For the first few minutes, Chris was stiff, frozen by the anxiety that was gripping him. Since the “explosion,” my witty, outgoing, charming husband had disappeared. I hardly saw his gorgeous blue eyes anymore as they were most often looking down or closed. When I did get to see his baby-blues, they were filled with sheer terror. After some time, holding the hat and sitting on the couch in Dr. B’s office, Chris started to relax. His voice became more audible, his speech less mumbled and at times, he could even look up and make eye contact with Dr. B. I was in awe. Suddenly, Chris grew tenser, his breathing more rapid, his eyes closed and he dropped his head.
“Tell me what’s going on Chris, what just happened?” Dr B asked.
“Are you feeling more anxious than you were a minute ago?” Chris nodded yes. Dr. B continued, “I think you experienced a second wave of anxiety, and that’s OK, you are doing great. Let’s just keep chatting.”
Chris’s anxiety gradually reduced as Dr. B said it would and for a short time in her office, I had my husband back. That day as we left the office, Chris now wearing the gray fleece hat– I was in awe of what I had just witnessed. I was filled with hope. Moments later, the world outside Dr. B’s office proved to be too overwhelming and Chris once again became completely consumed by his OCD. Still, I was fully aware of what I had just witnessed and I knew Chris was going to get his life back and more importantly, Syd would get her daddy back.
We saw Dr. B two to three times a week to start. Each session I would bring a bag full of “contaminated” objects from home: couch pillows, a jacket, another hat and eventually, Beary. Beary is a three-foot-tall stuffed bear Sydney dragged around the house. She loved Beary, dressed him up, had tea parties with him, snuggled with him and wanted to take him everywhere. We were a couple of weeks into therapy at this point and since making Sydney sick was Chris’s biggest trigger, it was time to start “contaminating” her. Chris was not very fond of the idea of contaminating Beary, exposing Sydney to “danger.”
I want to revisit my statement from earlier, how OCD doesn’t need rational thought or the laws of physics. Chris was going to contaminate Beary with a tissue we brought from home that had the tiniest speck of Chris’s dried blood on it. The speck was so small I had to search for it as I handed the tissue to Chris while we sat on the couch in Dr. B’s office, with Beary across our laps. Chris was now able to sit back comfortably on the couch and even place his arm on the armrest without a hint of anxiety. To Chris, the “danger” of contaminating Beary came from his OCD‘s conviction that he had been infected by HIV and that he was now going to expose Syd to it…via the barely visible speck of days-old, dried blood on the tissue.
How had Chris been exposed to HIV? Let me count the ways: by grazing his fist across a treadmill at the gym, from the random trash on the street he walked near that could be a smashed needle, from countless bits of cat litter on our floor or in his sock that felt sharp and must have been a needle, from a red mark on the door frame of the inpatient clinic he brushed against with his arm, from a drop of liquid in something on the ground that somehow got into his eye, from the water that “splashed up” into his eyes and mouth when he was washing his hands, from something in his food, by shaking hands with someone he didn’t know that well, from brown spots on our dining room window, by using hand lotion and rubbing it into his still raw hands…you name it and Chris’s OCD was convinced it was going to infect him.
You might ask, “Why not just explain how HIV is actually transmitted?” Here lies the rub of OCD: not only would explaining how HIV was transmitted make Chris’s OCD stronger, it also would not work. It would not be good enough. OCD will always ask “What if…?” as it is looking for absolute certainty, which just simply does not exist. The explanation itself would be neutralizing, essentially disarming the threat giving Chris a false sense of security that something was “safe.” To someone without OCD, I could simply say, “No way, you are fine,” but to Chris, this simple statement would actually set off a whirlwind of OCD activity, sending him down the rabbit hole of anxiety, panic, terror, shame and guilt.
In Dr. B’s office that day, with tears streaming down his face, Chris touched the contaminated tissue to various parts of Beary’s body. Chris’s body shook with his sobs as he repeatedly whispered “I’m sorry.” Dr. B asked Chris why he was apologizing and Chris explained he was apologizing to Sydney for having to do the exposure, for opening her up to potential HIV infection because he was not strong enough to “fight the OCD.” I wanted to reassure Chris, to help him laugh it off, I mean come on, it was a tissue with a speck of non-HIV infected blood on it. At this point, thanks to Dr. B and my copious amounts of reading and researching, I knew I couldn’t. Like so many of his sessions, I sat silently and watched.
Just like in his previous sessions, Chris’s anxiety eventually subsided. As we headed home from the office, I told Chris how proud I was of him. Chris laughed, shaking his head, embarrassed by what had just happened. Just because OCD doesn’t care about rational thought doesn’t mean the person it is tormenting doesn’t. Outside the gripping fear, Chris knew his concerns didn’t add up, but when OCD had him in its grasp, it didn’t matter. Later that day, when I brought Syd home from daycare, Chris’s OCD went into overdrive and his anxiety skyrocketed. Doing the exposure without Sydney there was one thing, but having her now come in contact with the Beary he had contaminated– it felt like his worst nightmare.
Chris begged me to keep Sydney away from Beary, he begged me to wash her hands, he begged me to keep her safe. He would look at me with sadness, terror and tears in his eyes and he would mouth the word “please!” We tried to keep things as normal for Sydney as we could. We had explained Chris’s OCD to her in terms she could understand. Having been diagnosed with anxiety a year or so earlier, we had been guided to help Sydney externalize her anxiety and name it. Sydney named her anxiety “Cutie Worry” and that was how we referred to Chris’s OCD.
“Mommy, is Daddy going to help put me to bed tonight?” Sydney asked as she snuggled with the newly “contaminated” Beary.
“Yes, honey, he is, he just needs a few minutes and then he will come in.”
“Is Daddy’s Cutie Worry bothering him?”
“Yes it is, honey,” I said. Sydney started to get out of bed, “Where are you going?”
“To help Daddy.”
I can’t remember if this was the first time she wanted to help Chris, but it certainly was not the last. Sydney went into our bedroom and guided Chris by the hand into her room. While we never told Sydney she was Chris’s biggest trigger, we had explained he was afraid of making her sick. Syd developed this almost sixth sense and could tell when Chris was avoiding touching her out of fear of contaminating her. Without fail, she would grab his hand, hold it and take him to go play. At barely 5 years old, she just knew. Chris survived that night with Syd snuggling the “contaminated” Beary and over the course of the next week, Beary no longer seemed to bother Chris’s OCD. This is the nature of exposure– terrifying at first, not such a big deal in time.
It is now 10 months later and Chris’s OCD is really well managed. OCD is still a part of our daily lives, but in a much different way now that Chris has learned the tools of ERP. I get lulled into a false sense of normalcy, of life without OCD, and then his OCD will flare and I am reminded of the beast that lurks within, waiting for the tiniest glimpse of an opening through which it can regain some control over its host. For Chris, it is when he is really tired or stressed or getting ready to travel for work. In some way I think not being home is still a huge trigger for him as he won’t be here to protect us. I don’t think this is all an OCD response, he takes pride in being our protector, our knight in battled-damaged armor.
Back in May, Chris “graduated” therapy with Dr B. We had worked down to meeting once every other week, and then Dr. B set him free. At that point, Chris had the tools, Dr. B’s presence at exposure sessions was simply serving as a safety net. If Dr. B suggested he do something as an exposure, his OCD took that to mean that the potential for risk wasn’t that great in the first place. Essentially, Dr. B had become neutralizing.
Exposures now are focused on things that happen in Chris’s daily life. Many days, he seeks very little reassurance and is able to choose to do precisely what his OCD does not want him to (like touch an unknown speck of something or not wash his hands before playing with Sydney). Some days, Chris seeks a lot of reassurance and guidance. In future posts, I will go in-depth into what this has been like for me — in the beginning and now.
Sydney continues to be an amazing exposure coach, though sometimes Chris’s OCD becomes a little too much for her to bear. Another theme of Chris’s OCD is that he will inadvertently injure her through some normal activity, like applying too much downward pressure when kissing her on the head, somehow hurting her spine. Chris, though much less now, would ask Sydney if she was OK, if her neck felt OK, if she was hurt…over and over. Being a mom, I would sometimes tune out what was going on. I was aware Chris and Syd were conversing, but not what was being said. My mom-sense would kick in when I began to feel Syd’s distress. I would tune back in, now aware of what was happening and would jump in and remind Chris that Sydney had already answered his questions. I then set the ground rule that Chris was not allowed to ask Sydney if she was OK unless she said, “Ouch!” I figured this was reasonable since one of the themes of Sydney’s anxiety is an overreaction to pain or being injured. We would definitely know if he had somehow hurt her.
During those times when Chris would repeatedly ask Sydney if she was OK, before I could intervene, I would see her eyes go distant and almost glaze over. I could tell that she was checking out and starting to retreat from the stress. Once I had established the ground rule that Chris could not ask if he hurt her unless she said “Ouch!” this theme seemed to subside. On the few occasions it has popped back up, I can usually interrupt it by simply reminding Chris of our rule.
A month or so ago, Chris took Syd to a party at one of her friend’s houses (on his own, without me– a huge victory for him). The house was on a lake and the kids went swimming. Before leaving, Chris was in the bathroom with Sydney getting her changed and he realized her dry clothes were still outside. Chris left Sydney in the bathroom to retrieve her clothes. When he returned to the house, Sydney was in the living room, stark naked, and one of her friend’s relatives was also in the room (though not near or interacting with Syd). Chris’s OCD went into complete overdrive — what if that man had touched her, what if thanks to his negligence Sydney had now been molested? I can only imagine what that car ride home must have been like for each of them. Chris was wrecked with guilt, fear and panic. Sydney was being asked repeatedly if she had been touched or hurt and despite her saying, “No,” he kept asking.
When they arrived at home, Chris was frantic. He begged me to ask Sydney if anyone had touched her. I could tell from the look on Sydney’s face and the look in her eyes, she was starting to struggle. I ignored Chris’s requests, which really pissed off his OCD, and I listened as Sydney told me about the car ride home and that no one had touched her. I got Sydney into her normal nighttime routine, brushing her teeth and hair and asked her to pick out some stories while I went and talked with her dad.
Chris was sitting on our bed, obviously in the grip of his OCD. He jumped up when I walked in, “Please, Jodi, just ask her! What if-” I cut him off.
“Chris, I know this is really hard for you right now and that this feels really scary for you, but Sydney has already answered your questions.”
“But what if!” he tried to interject.
“Chris, your OCD tells you that you are a good dad when you listen to it, but right now I am telling you Syd has had enough. She is done. She cannot take any more questions about something she has already explained. Your OCD doesn’t actually care about keeping her safe, or me for that matter, it only cares about isolating you. What happens when you listen to your OCD?” I was full-on Mama Bear at this point.
“It gets worse.” he responded, voice soft, but stronger than in the past.
“And what happens when you go against what it says?” I asked, knowing that I was actually talking to Chris and not his OCD.
“I get better.”
“Great, so now let’s get in there and put our kid to bed. Get in there and be the amazing dad you want to be and you are.”
Chris was able to regain control of the beast and while he was still anxious, scared and uncomfortable while putting Syd to bed, ERP has taught him those feelings of discomfort are temporary and more importantly, tolerable. Despite OCD reeling in the background, they laughed together before we turned off the lights. Their deep, soulful belly laughs seemed to erase the events of just an hour earlier. Sydney drifted off to sleep as she always does, to the sound of Chris telling her a story about her favorite magical characters and lands.
By the next morning, both Chris’s OCD and Sydney had practically forgotten about the incident. That’s how it is with ERP– terrifying at first, no big deal in time — and it seems that it takes less time the more experience Chris has in applying what he has learned from doing exposures.
I cannot begin to express my gratitude to Dr. B and to those who work every day to spread awareness and educate mental health providers on using ERP. Although OCD will continue to be a part of our lives, its role has been greatly diminished. As Sydney starts to exhibit some signs of intrusive thoughts, I am so thankful that we know what we know. In future posts I will go more in-depth as to what ERP looks like from this new perspective as a parent.
Original photo by author