Exposure and Response Prevention

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    Kaden M (he/they)

    Accepting My LGBTQIA+ Identity Has Helped Me Manage My OCD

    I’ve been meaning to write this piece for a long time. Each time I sat down to type, I would immediately stop. Write about something else. Or nothing else. Nothing at all. Today is different. Today is the day I write this piece, and hopefully share it with someone who… needs it. In 2008, at the lovely age of 14, I found myself being plagued and bombarded with intrusive thoughts. Now, it didn’t happen overnight; in fact, I had been dealing with undiagnosed obsessive-compulsive disorder (OCD) likely all my life. What happened during my eighth grade year was that the content of the thoughts shifted from not just fears and worries about natural disasters and whether my family was safe; the content now included obsessive, intrusive thoughts with either sexual content, or me questioning my sexual orientation on an endless loop. I was trapped in a nightmare, or so it felt. I think the most nightmarish thing about it was the fact that no one knew… the fact that I felt so ashamed and self-loathing, that I chose to confide in nobody for several more years.I had compulsions that went alongside my obsessive thoughts. I knew they were irrational. This included knocking on wood in certain increments, googling my every question on the internet, repeating the same phrases over and over in my head, and squeezing my eyes shut until the thoughts went away (which rarely ever worked, as compulsions tend to worsen obsessive thinking and intrusive thoughts). Sometimes I punished my body by fixating on my weight, the number on the scale, something that would eventually develop into anorexia. I struggled with co-morbid body dysmorphia and hated so many things about my appearance, ranging from my eyebrows and hair to my chest and stomach. Now, while this sounds like your classic OCD story, there’s a little more to it I’d like to share. Mental illness (particularly OCD), I believe, thrives on resistance. The more one resists the thoughts, the stronger and louder they grow, yes? What I learned was at the root of my OCD was more than just fear and a dysregulated basal ganglia (the part of the brain associated with the disorder)— I also hated myself. My body. My essence. Who I was. This self-loathing… I hate to say it, but it lasted until quite recently, well over a decade from eighth grade. I struggled with intrusive thoughts about being gay or bisexual or questioning. I couldn’t stand the uncertainty, the unknown. I wanted to be straight so badly, the internalized homophobia roaring inside of me. Now I know the truth at 27 years old— that maybe the best way to fight my OCD is to avoid labeling it with specificity at all. Perhaps I am not necessarily “gay or straight” the way my OCD wants me to say, no. Rather, I am a human who questioned their sexuality for a long time, and today, I am finally OK with the fact that I am member of the LGBTQIA+ community. Some days I wonder which specific label fits best (bisexual? Pansexual? Asexual spectrum?) but I know that if there’s one way to piss off my OCD, it’s to say that I am just a person who loves other people and that I am “not straight”— for once in my life, this is finally an acceptable answer. I have done tons of OCD treatment (including exposure response prevention therapy, transcranial magnetic stimulation and medications) as well as seven years of work on self love, acceptance and trauma, to get here. My experience is not indicative of anyone else’s — a lot of people obsess about the sexuality that they “aren’t” (ie., someone who is straight obsessing that they are gay), but in my case, I think the answer was less black and white. I also question my gender identity at times too, but today I am realizing that perhaps for once my OCD is not driving the car, that some level of questioning and fluidity is healthy and normal. And that, that feels amazing. In summary, I am honored to be part of the LGBTQIA+ community as well as relatively in remission from my OCD. I am no longer tortured and plagued by obsessive thoughts and compulsions at a near constant rate. I am honored to be me, and hope that I can promote a powerful message to those who are struggling with OCD, their identity or a combination. It can get better.

    Jo S.
    Jo S. @joaffe
    contributor

    My First Exposure and Response Prevention Therapy Session for OCD

    I breathe deep and shake out my shoulders, letting my breath loosen the knots in my stomach. I’ve met enough therapists in my mental health journey that the initial sessions don’t phase me much anymore. Today is different, though, at least in part because I’ve never met a therapist online. My nerves start to settle as we work through the get-to-know-you questions, and — he blindsides me. He reaches off-screen and grabs a knife, holding it casually in front of the screen like it’s no big deal. It’s a letter opener, he tells me. Somewhere in the logical minority of my mind, I know that letter openers aren’t all that sharp. Still, the one glinting at me through the screen is shaped like a sword, and I feel my composure start to crack. After a brief discussion of how the on-screen blade is making me feel, my new therapist — remember, I have never met this man before in my life — swivels the point of the blade toward his throat and rests it against his skin, right over where his jugular vein must be. My palms are drenched. My heart is racing. My stomach could outweigh the sun. Despite my growing desire to slam my laptop shut and never see this person ever again, I sit still and finish the session, trying my best to stay present as my new therapist removes the letter opener from the screen and talks me through the experience. Just like that, I complete my first session of exposure and response prevention (ERP) therapy. Despite ERP’s status as the “gold standard” of treatment for obsessive-compulsive disorder (OCD), many people haven’t heard of it. I certainly hadn’t, at least not before I discovered I needed it. Exposure and response prevention is the practice of triggering an obsessive thought and sitting with the discomfort it causes, rather than performing a compulsion to temporarily make you feel better. For someone with a contamination obsession, this might look like touching an “unclean” surface and not washing their hands after. It’s a message to the brain that the threat is not nearly as dire as it feels, which helps lessen the intensity of the obsessive thoughts. Before my foray into the world of ERP, I never would have even recognized my thought patterns as obsessive-compulsive. Sure, I’ve always felt a sort of resonance with other peoples’ OCD stories, but I am the messiest person I know, and I use the five second rule pretty liberally. It just seemed out of the realm of possibility that I might have the same disorder as someone obsessed with cleanliness and order. As it turns out, obsessive thoughts can be about anything (in my case, fear of causing harm to myself and/or other people). Compulsions can be mental, like, say, replaying a tragic news story over and over in your head to make sure you would never do something so violent. They can also be avoidance-based, like, for example, hiding all the knives in the house to make sure you don’t just snap and stab someone you love. All of this is why, even though every cell in my body was screaming at me to get out of my first exposure and response prevention therapy session, I made the choice to stay. Over the past few years, I’ve felt myself curling up tighter and tighter in a desperate attempt to keep myself safe from the world, and the world safe from me. Diving into a world of treatment that is ostensibly terrifying was hard, but it’s better than losing myself to the constant cycle of horror in my head. It’s an act of love to commit to opening myself up again. So the next time my therapist pulls out a knife and brandishes it for me to see, I will let the thoughts happen. I will sit with the panic inside my chest and remind myself that this is all worth it. I’m doing this for me. I’m doing this out of love.

    Community Voices

    I just noticed the enormous difference between the relief after doing a compulsion versus an exposure. The feeling of relief after an exposure is so pure. Feeling like you’re back to life after it, not back to the never ending circle ⭕️

    It's OK to Give in to Anxiety and OCD Compulsions Sometimes

    Last night, I gave in to anxiety and did a compulsion. Well, sort of. I went over to my partner’s for dinner and was planning on spending the night, something I have done countless times before. At the same time, I couldn’t stop thinking about my cat, Jade, who gets very upset when I leave for more than a few hours. She weaves in and around my legs meowing any time she thinks I might be leaving, and when I get back she wants me to pet her constantly. Logically, she’s a cat. She has food, water and a litter box. She’s fine. But on the other hand, she is a very emotionally bonded, nervous cat, and I start to feel really bad when I leave her alone. Also, you can’t out-logic obsessive-compulsive disorder ( OCD ).   Rather than continuing to read and work on my homework at his place, I became wrapped up in the anxiety. I began feeling terrible for leaving her, and I had an urge to go back home immediately. I knew going home would be giving in to the anxiety and OCD. I also knew if I went home, it would make leaving her all the harder the next time. I have to be able to leave my house and have a life. I tried to question what would be working toward my values, but both my partner and my cat are part of my values. Plus, when in a thought spiral, it’s hard to think too straight about values. I’m all for doing exposure and response prevention (ERP), but at the same time, we sometimes don’t have the emotional capacity to resist. And that’s OK. In the end, I decided to go home — well, sort of. I decided to go home but delay the compulsion by half an hour. I looked at my phone and scheduled that I could leave at 10:30 p.m. I had to sit with the anxiety until then. This is a common technique in ERP. If you can’t resist doing the compulsion altogether, delay it. This is how I did my first exposure ever in treatment. I used to have a fear of anything touching my nose. OCD told me I would breathe in that smell instead of oxygen, and die. My first exposure was to touch something with a mild smell to my nose: a piece of chocolate. Then, the goal wasn’t to completely resist washing off my nose forever. The goal was to wait five minutes before doing the compulsion. The next day, the goal was 10 minutes. Then 30. Then an hour, until I could go without washing my nose. Exposures are not black or white, resist or compulse. In dialectical behavior therapy (DBT), we call this type of compromise “walking the middle path.” So, I laid down on his couch while he worked, and I rode the anxiety wave. Every once in a while, he came over to give me an encouraging squeeze. I mostly kept my eyes closed as I felt the fear, though I checked the time every few minutes. By the time it hit 10:30 p.m., I was noticeably calmer. I had let myself feel the anxiety, and a lot of it had come down. I would say my subjective units of distress (SUDS), a tool for measuring anxiety, went from a 7 out of 10 to a 3. I almost considered staying again. I decided though I had done enough work facing anxiety for that evening, and I went home. Sometimes, anxiety wins. Sometimes, I win. Sometimes we both win, like in this case where I did the compulsion and was able to delay it. It’s OK to have compassion for yourself if you do the compulsion. It doesn’t mean a relapse; sometimes it’s just a lapse, or a blip, even. I’m always doing my best. And I’ll try again next time. Morgan

    How Contamination OCD Treatment Will Change Because of COVID-19

    My therapist stands up, walks over to the bookshelf in his office, and picks up two red apples that are sitting on one of the shelves. The apples look out of place next to his personal library of psychology books, collection of fidget toys and various decorations. He grabs two plastic knives from the same shelf and hands me a knife. He hands me one of the apples. Silently, he then sits on the floor, cross-legged, and waits for me to join him. I am reluctant; I know what is coming. I finally take a seat on the floor, cross-legged as well. I can feel the carpet beneath my legs as I hold the apple in my left hand and the plastic knife in my right. My therapist begins to cut into his apple. He cuts it flawlessly into slices, an impressive feat since we are using plastic knives and just cutting the apples in our laps without the use of a table or other hard surface. A few seconds later (though these seconds feel like days), I begin to slice my apple as well. I am not as talented at this freestyle cutting as he is. My slices are jagged and uneven. My therapist then places an apple slice on the floor and rolls it around. He makes sure each side of the apple slice touches the carpet multiple times as he rolls it over and over. I am cringing on the inside. But I know what I must do next. I slowly place my apple slice on the floor. I roll it over once, then twice, then a third time. I pick it up and look at it, disgusted. I can’t help but think of all the germs that are on that floor, embedded in the carpet, and now on my apple slice. My therapist picks up his apple slice and holds it near his mouth. I know he is waiting for me to do the same. In another short period of seconds that felt like days, I begin to raise my apple slice to my mouth as well. I stare at it, examining it as if I could physically see all the germs that now tarnish it. Sometimes, I expect that I actually will see the germs; but, of course, I never do. My therapist and I are there, stuck in what can only be described as an excruciating time vortex, preparing to eat apple slices off the floor. We stare at each other for a few seconds. He can sense my hesitation, my disgust, my anxiety . Alternatively, I can sense his support, encouragement and faith in me. We share these feelings without ever saying a word. I look down at my apple slice and then raise my gaze again to meet my therapist’s eyes. He waits for me, patiently. With our eyes still locked, I move my apple slice closer to my lips. He mirrors me, doing the same. And then we both take a bite. Exposure and response prevention therapy, or ERP, has long been considered the gold-standard treatment for obsessive-compulsive disorder (OCD) . ERP is in the family of cognitive behavioral therapy, or CBT. ERP often looks a lot like what I just described above; a trained therapist encourages their clients to face their fears head-on and then refrain from engaging in any sort of compulsive or compensatory acts. This particular “exposure” I described is based on my irrational and debilitating fear of germs, contamination, and illness. Over the course of many months, my therapist and I worked through a series of exposures in which I was intentionally confronted with a feared situation (germs) and encouraged to face these fears head-on (as I did when I ate the apple slice off the floor). Over time, ERP retrains the mind, and the feared stimulus becomes less and less threatening. The idea is that ERP serves as a bit of an “overcorrection” — in other words, eating apple slices off the floor in my therapist’s office for a couple of months ultimately allowed me to be able to eat out at restaurants without having a full-blown anxiety attack if I didn’t have my hand sanitizer with me. To paint an even more graphic picture for you, eating apple slices off the floor was not the most harrowing exposure I did to try to combat my fear of germs. Over a series of months, my therapist and I rubbed apple slices on public restroom sinks, doorknobs, elevator buttons and the backs of toilet tanks. Each time, I shook my head, said I could not do this, and stared at the apple slice waiting for the germs to appear. I thought if the germs appeared, or if I felt them in my hand (which I sometimes believed I did), I could say, “Look! I was right!” But the germs never appeared. My therapist was always patient, yet always unwavering. He never forced me to do anything, but encouraged me nonetheless. And, eventually, I (almost) always ate the apple slice. As you may have surmised by now, these events took place months ago. I have not seen my therapist in-person for quite some time now, and I do not know when we will physically meet again. Treatment of OCD has entered uncharted territory due to the threat of the coronavirus (COVD-19); it is no longer expected, advisable or safe for clinicians to conduct ERP in the way I described above. The “illogical” fears of many people living with OCD have suddenly become logical; people without OCD are engaging in cleaning and sanitizing behaviors that go well beyond the “normal standard” prior to the pandemic. For those of us with OCD — the fears we have spent months (and years) trying to untangle and strip of power have suddenly become quite real, with no foreseeable end in sight. I have the unique experience of being both a person with OCD and a therapist myself. I wonder how clinicians like myself (and my own therapist) will have to adapt and change the way we treat OCD going forward. The “gold-standard treatment” is not so gold anymore. The way we treat this disorder will have to be reflective of the times we are living in. Understandably, not much research has been done yet with regard to OCD treatment in the midst of a global pandemic. But some researchers, clinicians and other professionals have begun to devise a new and improved discourse for treatment of this disorder, given the circumstances. According to Fineberg et al. (2020), clinicians should give consideration to the use of medication for the treatment of OCD during this time. Specifically, “based on the risks associated with exposure and response prevention (ERP) in the pandemic … pharmacotherapy should be the first option for adults and children with OCD with contamination, washing or cleaning symptoms during the COVID-19 pandemic.” ERP as it has been done traditionally (as I described above) is no longer safe for either the client or the therapist. Therefore, medication (when prescribed by a doctor and taken with compliance) might be a helpful option for clients with OCD to consider and discuss with their treatment team. In particular, the use of selective serotonin reuptake inhibitors (SSRIs) has evidence of success in alleviating the symptoms of this disorder. Additionally, Fineberg et al. (2020) offer suggestions from a cognitive-behavioral perspective regarding how to adjust one’s ERP treatment plan during this time. Fineberg et al. (2020) recognize that it may “be difficult to disentangle OCD -related cleaning and checking compulsions from rational COVID-19 -related safety behaviors.” Therefore, the authors “recommend significantly tailoring CBT to take into account the CDC guidance.” Clients with OCD should no longer be expected to stop washing their hands completely, even if this was part of their exposure plan prior to the pandemic. Instead, Fineberg et al. (2020) suggest, the therapist should focus on supporting their clients and “trying to prevent them from deteriorating.” The authors suggest using activity scheduling and behavioral activation with clients to combat the unfortunate reality that “obsessions often expand to fill a vacuum of time.” With too much time on their hands and fewer in-person exposure opportunities (as well as the looming threat of a global pandemic), clients with OCD can be more prone to increased obsessional thoughts and compulsive acts. Treatment providers who see clients diagnosed with OCD are currently facing a unique and unprecedented predicament. My therapist often helped me realize that my fears around germs were irrational, or at least not as bad as the catastrophic scenario my brain had concocted. Now, however, he has his own fears around contamination and illness related to the pandemic. He has to take care of himself and his loved ones. It would be unsafe and inadvisable for us to continue engaging in ERP the way we had been doing it for many months. The way we treat OCD has to change; there is simply no way around it. Treatment protocols will have to be adjusted for the foreseeable future, and possibly forever. I am curious to see how this pandemic and its aftermath impacts both my treatment and that of my clients. We have no choice but to use the information at our disposal from both OCD experts and public health officials to make the most educated decisions moving forward. Only time will tell how COVID-19 influences OCD symptoms, diagnosis, and treatment in the long term. But I believe we can say with certainty at this point that I will not be eating apples off the floor of my therapist’s office again for quite some time. Struggling with anxiety or OCD due to COVID-19? Check out the following articles from our community: How Can You Tell the Difference Between Anxiety and COVID-19 Symptoms? 6 Tips If You’re Anxious About Being Unable to Go to Therapy Because of COVID-19 What to Do If the Coronavirus Health Guidelines Are Triggering Your Anxiety or OCD Mental Health Resources to Help You Cope During COVID-19 An Activist-Therapist’s 15 Affirmations for Hope Amidst COVID-19

    Why OCD Isn't Beneficial During the Coronavirus (Covid-19) Pandemic

    In case you missed it, The Wall Street Journal published an opinion piece on March 31, 2020, written by Dr. Aboujaoude, a psychiatrist and professor of psychiatry at Stanford University.  The article is titled “We All Need OCD Now.” Given the current events that are unfolding related to the coronavirus (COVID-19), the new viral strain in the coronavirus family that affects the lungs and respiratory system, the CDC has released a variety of protocols for cleaning and sanitizing our hands, environments and frequently used objects. In this article. Dr. Aboujaoude writes about a patient of his who has obsessive-compulsive disorder (OCD) , and then ends the article by suggesting that, “[a] little OCD, right now, wouldn’t be so bad.” He recommends: “we can look to people like [his] patient for discipline and inspiration.” First and foremost, I want to thank Dr. Aboujaoude for his work in the field of mental health and psychiatry. Psychiatry is a discipline that requires years and years of hard work, persistence and determination. I have the utmost respect and appreciation for all doctors, especially during these trying times. That said, I do think it is worth sharing an alternative opinion to your article, doctor. I have the unique experience of being both a rising mental health professional and a person with OCD. I was motivated to enter the field of mental health due to my own journey with mental illness . Doctor: from mental health professional to mental health professional, I feel this article invalidates the experience of our clients/patients. Anxiety can be viewed as evolutionary to an extent, yes; it can protect (and has protected) our ancestors from disease, illness and harm for many years. However, the diagnostic criteria for OCD, as set forth in the DSM-5, requires the presence of “clinically significant distress or impairment in social, occupational or other important areas of functioning” in order to make a diagnosis. “Clinically significant distress” means that people with OCD feel the impact of the disorder on their daily functioning and quality of life. They do not see it as something enjoyable, virtuous or beneficial. It is a debilitating disorder that makes normal tasks of living difficult to manage. A person with an OCD diagnosis is tormented every day by the “clinically significant distress” created by this monstrous disorder. Additionally, a goal of treatment when working with people who have OCD is to engage with them in intensive exposure and response prevention (ERP) therapy. In this therapy, the person with OCD (under the guidance of a therapist) purposefully exposes themselves to the feared stimulus (i.e., germs) and then resists the urge to perform the normally performed compulsion (i.e., washing hands). Therefore, the crux of the therapy revolves around retraining the brain to sit with the anxiety and wait for it to gradually decrease, ultimately determining that the perceived threats are not nearly as bad as we thought (or do not exist at all). Describing compulsive cleaning behaviors as “evolutionary” is harmful to the person with OCD and provides reassurance that their behaviors are rational and necessary. This will ultimately impede progress with regard to overcoming OCD and improving the person’s quality of life. Now, from just a person with OCD, this article brought up a lot of feelings for me concerning my own experience with the disorder and my treatment process. I’ve been in ERP therapy consistently for about a year and a half now. I’ve overcome many of my biggest fears through this therapy modality. But OCD still plagues me each and every day. It still makes me feel “clinically significant distress.” I would be lying if I said the coronavirus pandemic hasn’t thrown my treatment for a loop. Doctor, I’ve spent years retraining my brain to understand the threats I perceive are not as bad as I think they are, or don’t exist at all. But suddenly, the threat is real. I am nervous about losing the progress I have made in therapy when this is all over. Many people will be able to go back to a somewhat “normal” way of living, eventually. People will slowly start shaking hands again and eating finger food again. People will stop carrying hand sanitizer everywhere. But for us who are living with contamination OCD , it won’t be that easy. We will be faced with possibly having to retrain our brains all over again. We are working tirelessly during this time to not lose the progress we have made in therapy doing ERP, while still following the necessary protocols right now due to the virus. It is a struggle, now more than ever, to not let OCD win. Doctor, as I mentioned at the beginning of this piece, I have an indescribable amount of respect and admiration for the work you do as a psychiatrist and a professor. Working in the field of mental health is no easy task, and unpredictable life events (like a global pandemic) can test even the most foolproof and evidence-based theories of treatment (and our patience). However, I think it is important to advocate as a member of the OCD community, especially given the current events. Struggling with anxiety due to COVID-19? Check out the following articles from our community: What to Do If the Coronavirus Health Guidelines Are Triggering Your Anxiety or OCD 8 Soaps You Can Use to Help Prevent the Spread of Illness How Can You Tell the Difference Between Anxiety and COVID-19 Symptoms? Which Face Masks Prevent Against Coronavirus? 6 Tips If You’re Anxious About Being Unable to Go to Therapy Because of COVID-19

    Community Voices

    Who has participated in Exposure Response Prevention Therapy (ERP Therapy) for OCD? #erpt #ExposureAndResponsePrevention #OCD #IntrusiveThoughts

    I'm having difficulty managing the symptoms of OCD and was told that this was the most effective form of therapy for folks living with OCD. Any stories or recommendations would be greatly appreciated.

    3 people are talking about this

    My Husband's Success With Exposure Prevention Therapy for OCD

    “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. “I, I,” he stammered, unable to get the words out, “My OCD…” his voice trailed off as he shook his head, trying to fight the grip OCD had on him. “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. Until next time, thank you for reading and just remember you can do anything, even tame the heinous OCD beast, one inch at a time. If you need help finding an ERP therapist near you, please visit iocdf.org. You can find additional resources at peaceofmind.com

    Natalie Amo

    What Is OCD Treatment Like?

    Obsessive-compulsive disorder (OCD) keeps you down with fear. It sneaks into your mind and convinces you that you are it, that its fears are yours. So how do you fight something that feels so completely to be you? This is how we fight back. You are not your OCD. The treatment for any illness is never easy and OCD is no exception. Even I, who has successfully made it through treatment before OCD regained its power; even I, who can acknowledge its effectiveness; even I, who can see how dark and unhappy I have become once again under OCD’s grasp. Even I find it extremely difficult to drag myself to treatment, to commit to the fight. I wish there were some magical pill to cure OCD, but there isn’t. Many people have asked me what treatment looks like. And while it can be hard to explain, when I am able to find the right words, not only does it help them understand the process, but also to understand and respect the illness itself. I am no expert, but I will do my best to put into words how we fight this debilitating illness. To understand the treatment, we must first understand at least a very basic picture of how an OCD brain functions. I personally struggle with contamination OCD, so I will be using that as a framework for my examples, but please keep in mind there are many types of OCD. Let’s start with someone who is not battling OCD. If they touch something dirty, whether it just be dirt or a mild chemical of some sort, their brain has a process or pathway to handle that. First, they touch the contaminate and their brain says, “That’s dirty, should wash hands,” which sends the signal further down the pathway and instructs the person to wash their hands. The person does so, which then sends the signal to the brain that their hands are now clean, and finally signals the person that they are safe, and can move on with their day. A linear, cause-and-effect pathway. For someone with OCD, that pathway becomes stuck on a loop, feeding back into the original signal of “dirty, contaminated, etc.” and magnifying it to a signal of “extreme danger.” In this case, I would touch the contaminate and my brain says, “That’s dirty, should wash hands,” which sends the signal to my hands to wash. I do so, but instead of sending the “clean” signal, my brain says, “Wow, whatever you touched was so dangerous you had to wash your hands, so you should wash again just to be safe.” So the normal response of washing hands further validated and intensified the original signal of “dirty,” rather than produce the normal response of “clean.” And the next time I wash my hands, the signal will again get looped back, most likely adding to the list of suggested safety behaviors. “Better wash your hands again just to be safe,” becomes “Wash your hands, also you touched the faucet to turn the water on, so wash that too,” becomes “wash your hands and what else could you have possibly touched on your way from first coming into contact with the contaminate and making your way to the sink,” and so on and so on, deeper down the spiral. Every time I give in to another safety behavior, I am magnifying that fear, getting stuck in a never-ending cycle, never reaching that final stage of “clean.” It’s like running with all your might, but never moving an inch. So the way we fight this is by retraining our brain. Retraining it to have the proper amount of fear, and only require the proper safety procedures. But retraining your brain is not easy, especially when your brain is sending you signals of “danger” and you are in the habit of believing your own brain. It is very frustrating, to say the least, to have someone tell you that you can no longer believe what your mind is telling you, that you must go against those very real feelings of danger. That doesn’t come naturally and it is very distressing. Not only must you stop doing the multitude of safety behaviors you have been performing, but in order to successfully retrain your brain, you actually have to go above and beyond the normal — deliberately go past gross, go past scary, so that you can come back to the “normal” and not feel any fear. Until “normal” is boring again. This process is called exposure and response prevention (ERP). I must purposefully and deliberately expose myself to the contaminate I fear and then prevent the response for as long as possible. In doing so, I can hopefully retrain my brain that those responses (safety behaviors) are not necessary to be safe. Basically, when I or anyone else is asking me to go to treatment or to fight my OCD, they are asking me to do the thing I am most afraid of. Do the thing my brain — the brain I have trusted my entire life — has told me could mean life or death. I feel like even this far in the description, it is hard for someone without OCD to truly grasp the magnitude of this process — the sheer amount of willpower and strength it takes to battle this illness head-on, simply because it can be very hard to wrap your mind around an OCD fear. OCD usually takes something minor, something the rest of the world doesn’t necessarily associate with that amount of fear and turns it into a monster. So, if you can’t see or understand what I am afraid of — if it looks to you like I am afraid of the invisible — then this will be hard for you to grasp. So, what are you most afraid of? Spiders, snakes, the ocean, sharks, heights? Whatever it is, picture that. We’ll use snakes in this example — specifically non-poisonous, harmless snakes. Because your therapist, while they will encourage you to face your fear, they will never tell you to do something that would actually put you in harm’s way. Picture that you are living in a world where snakes are as common a sighting as dogs. Currently, your fear of snakes has become so severe it prevents you from leaving the house in case you might encounter one. Now someone presents you with a deep, dark pit of snakes, and tells you the only way to get over your fear is to stick your arm in it (remember, deliberately go past normal so you can come back). And if you don’t stick your arm in, then your fear of snakes will intensify to include objects that look like snakes, including hoses, cords and headphones, shadows that move like snakes, a whisper or a plastic bag blowing in the breeze that sounds like a snake. You will be afraid of things that may have touched snakes until you can no longer let people into your house without a grueling process to protect you from what they may have touched outside your house in the real world. You will be afraid of the color green, so much so you flinch when green passes by your peripheral vision. You will be afraid of small green crumbs and pieces of plant life, for the chance it could have come off a snake. Your mind will convince you of the presence of invisible, ethereal snakes that float around in your home. You won’t be able to see them but you will be sure of their phantom touches, as real to you as if a 6-foot boa constrictor brushed passed your head. What began as a fear of snakes will be magnified to fear of almost everything. And while you are standing there with your biggest fear staring back at you out of that pit, you are going to tell yourself it’s not worth the risk. That you may be limited by your fear of snakes right now, but you’ve still got your house, and being stuck in there is not so bad. Much better than the possible alternative if you were to stick your hand in that pit. But what you are not seeing is that your house will soon turn into just a single room, and that room will turn into a chair, and you will be afraid to blink. So you start with something small. You’ll simply sit and deliberately imagine snakes. You will do this until your spike of fear begins to subside, you will do this until you are bored of thinking about snakes. Then you will open your blinds and look outside, watching for snakes, again doing so until you are bored. And will continue to increase the magnitude of these exposures, until it’s time for you to step outside. Until you find yourself in front of that pit again. Now truly imagine yourself standing in front of a pit containing what you fear most. It will not be an easy decision to put your arm in. Every fiber of your body will be fighting against any movement toward that pit. It will feel like someone is playing tug-of-war with your arm. Even so, you eventually bring yourself to do the unimaginable. You’ve decided the chance of freedom from this debilitating fear is worth the risk. You did it! And after weeks of distress, unbelievable willpower and effort, you can now… finally… plug in the lamp because you are no longer afraid of the cord. And this is the moment you realize you will have to continue facing your deepest fear again and again in order to fully regain your independence. You have a long way to go. But you did just take a giant step towards freedom — one you thought impossible, but now know to be possible. This is what treatment looks like for someone battling OCD. This is a daily battle. You don’t get breaks; OCD won’t give them to you, and if you get tired and slip back into old safety behaviors, you’ll feed the fear. It’s crucial to build a support team for yourself; family, friends, a therapist you can trust to walk next to you through the fear. While they cannot fight it for me, I have found, at least, I cannot fight it without them. Keep in mind that once one fear is conquered, a person still must continue to maintain it, as it will always be right behind the veil trying to find a way back in. And on top of that, OCD is now like a hurt little bully who had their toy taken away. So, while you are maintaining your control over the fear, OCD is waiting on the sidelines looking for a new trigger to turn into a monster. And this time, OCD has learned the same tools you have during treatment, and it has adapted. So you must do so too, again and again. I don’t paint this picture to seem hopeless, although it can feel that way, and it will certainly be a long battle. But I do so in the hopes someone will pause when they see someone struggling to conquer their mental illness and it may appear they are doing nothing. In truth, they are doing quite the opposite; they are fighting the monster in their brain, the monster you can’t see. Because this is what they are asking themselves to do. What they are trying to muster up the courage to commit to, all while OCD lives in their brain gleefully playing whack-a-mole with every bit of courage that pops up. A version of this article was previously published on the author’s blog.

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