At my first International OCD Foundation (IOCDF) conference several years ago, I attended a panel moderated by this hilarious guy, Chris Trondsen. I saw him running around the venue that weekend and at every conference I went to after that, and I finally met him this year! Before everything shut down due to COVID-19 we were both at an OCD Gamechangers event in early March, and it was so nice to get to know him better. He is funny, but as you’ll learn today, he’s also seriously passionate about spreading awareness of obsessive-compulsive disorder (OCD) and helping as many people as possible. Chris must be one of the busiest people I know! Chris, thank you for everything you do, and for sharing your story with us.
How long have you had OCD, and how did you realize what you’d been going through was part of a treatable disorder?
Sadly, my story is very similar to most individuals suffering from OCD. I wish I could tell you that as soon as I began to develop OCD symptoms, I was rushed to the nearest psychologist who specialized in treating this condition, and six months later, I was symptom-free! But that simply was not the case. Identifying that I was suffering from mental illness was a long and challenging journey. Although I had been suffering from OCD since I was a small child, it was not until the age of 21 that I was properly diagnosed.
With as much information currently out there on OCD, I am sure you are wondering how come I suffered from undiagnosed and untreated OCD for so many years. Nowadays, many individuals can identify that they are suffering from this disorder at an early age. However, when I was suffering from OCD, there was not as much public information available about this condition. I went nearly 15 years from when I first started showing symptoms until finally receiving a proper diagnosis.
To explain why it took so long to get diagnosed, let me back up a little. When I was nearly 21 years old, OCD had consumed my life. I was spending almost 16 hours a day on mental and physical compulsions. At the time, I was struggling with mainly three specific OCD subtypes. The first involved “magical thinking” obsessions—such as needing to go to bed and wake up at a “certain time” to have a good day and to feel “perfect.” I was also cleaning, bleaching, disinfecting, and wiping down every surface I came in contact with due to contamination and health-related concerns. I was also obsessively checking any room I would walk out of in fear that I would leave something important or valuable behind, and it would then be lost forever. I kept this level of intensity up for three years, becoming nearly housebound—only leaving my home to buy the bare necessities and cleaning supplies.
I eventually quit my job, dropped out of school, and rarely saw my family. I had also lost contact with all of my friends and close acquaintances. This intense isolation, along with my deteriorating mental health, led me to attempt suicide. Late one night, I drove my car into the garage, plugged up the exhaust pipe with a washcloth, and ran my car, hoping to die. I could not do it anymore; it all became too much for me, and I did not see a way out. As I was passed out in the car, my roommate came home from work and walked in on me in the garage. Acting immediately, I was able to get the medical attention I needed. As a result, my family became aware of the torment I was living through, and my mom immediately stepped in to help.
Like most people, we first went to my insurance to look for a therapist who could provide the care I needed. We assumed that I was suffering from depression and were looking for a general therapist who had expertise in its treatment. The first mental health workers I saw misdiagnosed me with schizophrenia, Tourette’s syndrome, bipolar disorder, and other ailments. This was because none of the initial psychologists, doctors, and psychiatrists I had appointments with specialized in treating OCD, therefore not recognizing my current symptoms as diagnostic criteria for obsessive-compulsive disorder.
In fact, it is a quite embarrassing story of how I eventually diagnosed myself with OCD. On Sundays I would go to a nearby 24-hour grocery store in the middle of the night to buy cleaning supplies and necessities for the week. I am not sure if you are aware of this, but at three in the morning, no cashier just sits and waits at the register for the few people crazy enough to be grocery shopping at 3 a.m. You had to ring a bell to get assistance, alerting the worker (who was usually stocking shelves) that you were ready to check out. While waiting to be helped, I was bored and decided to pick a magazine to look through to keep me occupied until the worker finished up. Here comes the embarrassing part—out of all the available magazines, I decided to pick up a girl’s teen magazine with good-looking actors and actresses promoting some popular trash TV show on the cover. As I began to flip through the first few pages, there was a small—and I mean tiny—page filler of an article that mentioned OCD. The article said that if you do the following three things, you might have OCD. As I continued to read the article, all three OCD behavior descriptions were things I was doing. The next day I immediately reached out to my mom, telling her about the article and that I thought I had this disorder. At the time, my mom did not think I was suffering from OCD. She based her opinion by comparing my symptoms with those of the disorder’s stereotypes. Since the stereotypes of OCD badly misrepresent what the disorder truly is, it cost me the opportunity to potentially receive care sooner than I did. However, after my suicide attempt, she did research and agreed with my assessment. We were finally able to narrow down what I was actually struggling with for all these years, and we began to search for some help.
Initially, I started working with a local therapist, who claimed he was the expert in OCD. He did an initial assessment with me and concluded that I was the worst case of OCD he had ever seen in all the years of treating the disorder. He told my parents that he would work with me, but it would take about four years to finally see any positive changes. He added that I would never be able to work or go to school and that my parents should prepare to take care of me for the rest of my life. I left each of our following sessions feeling defeated. Luckily my mom, the strong woman she is, did not give up.
She began researching treatment providers for OCD, feeling that my current therapist was not the right fit for me. After an exhausting search to find a clinician that understood and adequately treated OCD, my mom was able to find a specialized treatment center. She found this resource through the IOCDF. It was then, during the assessment and after taking the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS), that I received the OCD diagnosis.
Once you were diagnosed, how did you go about treating it?
After receiving inadequate treatment, my mom was able to find a center specializing in the treatment of individuals with OCD. Initially, we were looking for an intensive or hospital program due to my level of severity. However, all of these programs had a waiting list of nearly six months, and because of my recent suicide attempt, my mom and I agreed that I needed treatment as soon as possible. The center that my mom found, The OCD Center of Los Angeles in Westwood, California, agreed that I needed intensive treatment. However, because of the long waiting lists, we decided to attempt weekly therapy. The center reiterated the need to be self-motivating and driven to ensure that weekly treatment would be sufficient.
Once I was properly diagnosed at this center and ready to begin therapy, my therapist, Karen Pickett, described the specialized treatment for OCD. This therapy modality is known as exposure and response prevention (ERP) therapy. For the first time, I understood the treatment as having to face my intense fears to fight back against the OCD. To be honest, when she first described the treatment, it sounded a bit crazy. It felt as if I was about to be hazed as if I was pledging for a fraternity.
My therapist asked me what I feared the most. After listing out those fears—and let me tell you it was a long list… think War and Peace long—she explained that I would be systematically facing each one of the fears I had recorded. I remember thinking, “Is this woman crazy?” However, my therapist Karen explained that we would be taking it slow and that it would be a collaborative process. The most valuable component of having me buy in to the treatment was us creating a hierarchy—meaning we wrote out all of my obsessions, external triggers, and compulsions that I did because of OCD. We then ranked everything on a 1 to 10 scale, with 1 being the easiest to face and the 10 being the most difficult. That helped because there were some items on my list I could not even imagine facing head-on. For instance, my car was off limits, and I never allowed anyone to be in it. There were two main reasons for the resistance. The first was due to contamination fears. Anything that ended up in my house, including me, had to go in my car first. Therefore, my car had to be immaculate, or else I would contaminate the items coming into my home. The second reason my vehicle was off limits was that I had a fear I would get into a car accident and survive, while my passenger would not. Therefore, I would feel guilty forever, never being able to forgive myself, even if the car accident was not my fault.
Once the hierarchy was completed, we collaborated to come up with my initial exposure. I will never forget that first exposure. My dad and I shared a shower at home, so I would run my shampoo, conditioner, and body wash bottles under the water from the showerhead to “decontaminate” the containers. This was in case my dad had touched them. The water would then wash off any fingerprints, dirt, and so on left on the bottle. I feared that if I did not wash off the bottles, they would contaminate my hands, along with the cleaning agent placed into my hands, and I would remain dirty after the shower. I had deemed this as the most manageable exposure to face. Sure enough, going home after that session, I could not rinse off my shower products before using them during my initial shower. I remember that it did not bring on too much anxiety when completing this exposure. Instead, it was more of a weird, surreal feeling—as if something was not right, and I was doing something “wrong.” However, after being consistent with the entire week’s exposure, the hesitation and negative feelings had pretty much gone away. Showering without rinsing off the shower products now felt just as safe and “normal” as when I used to do the rituals. My therapist was good at processing what I learned from the weekly exposures and celebrating my successes with me.
As anyone who has been through treatment can attest to, this is pretty much how my treatment went for fourteen months. Each week we would discuss the prior week’s exposures. We would then talk about what worked and what did not and what I learned from completing the exposures that week. We would then troubleshoot the things that did not work. Additionally, we would cross off any of the compulsions I overcame, meaning any fears that no longer elicited any anxiety. Often, a compulsion would last only about two to three weeks on my list before I could cross it off and then replace it with a new exposure. Once we could cross off everything on my hierarchy, my therapist felt I had made all the progress I could in treatment. The next stage was to rebuild my life and use the tools I learned in therapy to face any triggers or obsessions that would arise. Treatment did not go as smoothly as that, but since no one wants to read a lengthy novel, I wanted just to highlight a few events that happened in treatment that I feel you should know.
First, treatment had many highs, but also many lows. Although I continued to fight throughout the therapy and do my work, there were still many times I struggled. Even though I was facing my fears through ERP, I was still giving in to many compulsions—especially at the beginning of treatment. What helped me was the direction from my therapist instructing me that I would not be able to get rid of all my compulsions at once. Trying to do that would overflow my brain and cause too much distress. Instead, we were going to take it slow. So I gave myself grace and understanding around giving into compulsions since I was working so hard to get rid of ones we were currently focusing on. I would give in to them but note mentally that eventually, I would be facing these too.
My mom was instrumental in my recovery. It was an honor to be the keynote speakers at the IOCDF’s Annual OCD Conference in 2011. She was a great support system throughout my journey. My mom was there to remind me of all the triumphs and successes I accomplished, especially when I was having a low day and felt like giving up. She was also there to support me on days when I would give in to many compulsions, and I was convinced that I was making no progress.
What was also helpful was when my therapist brought in my family to discuss reducing (and eventually eliminating) reassurance and enabling. This was single-handedly one of the best interventions from my therapist. It changed the trajectory of my treatment. Before this family discussion, I would call my mom nearly thirty times a day to ask her for reassurance. My mom is one of those people who was probably the last person on earth to get a cell phone. She is just behind the times on technology in general. However, she had purchased it simply to answer my calls privately, because she could get in trouble receiving the onslaught of calls I would place to her on her work phone. My mom says that when she found out she was actually helping me by no longer giving reassurance, it was the best day of my recovery. She was now off the hook, leading me to face own my fears instead of dumping them on her, and we would be able to go back to our mother-son relationship that OCD had hijacked. With my mom, along with the rest of my family, no longer listening to my confessions, offering reassurance, or enabling me, I began to face my OCD fears on my own. Much of my compulsions dropped off when my family stopped enabling the OCD. At my worst, my dad would cook my food for me, cut it up, and sometimes even feed me if I was struggling to eat it. I remember the day in treatment when I had to make my own first meal. It was merely a bowl of cereal. Nevertheless, due to compulsions, it took around four hours. Yes, I did it! It allowed me to begin to make my food and is why I can now cook (well, I would not say cook, maybe burn) my food to this day! Dropping the reassurance and enabling allowed me to become independent.
Medication. I know just the word causes some people to freak out, and I can completely understand why. The first psychiatrist I saw, who was terrible, recommended medication. He spent a whopping fifteen minutes with me, wrote a prescription, and then walked out of the room. I had so many OCD fears with medication and therefore did not take any medication after filling the prescription. I was afraid of how the medicine could potentially change my personality, wary of potential side effects, and concerned that it could have adverse effects on my health. I was also worried about how it may change my appearance—such as causing my skin to break out or cause hair loss—and with contamination, I was concerned about getting the pill “dirty” and then having a dirty tablet inside of me. So, I flushed the pills down the toilet. That served no ability to reduce my experience of OCD symptomology … but hey, the fish and the whales that swallowed my flushed pills are feeling great! No anxiety or depression for them!
When I started my treatment with Karen Pickett, I lied to her and told her I was on medication. For the first six months of my treatment, I did it without medication. However, as we began getting to the harder exposures on my hierarchy, treatment began to slow down and plateau. I struggled with overcoming the anxiety and compulsions as easily as I had during the beginning of treatment. I finally caved and admitted to my therapist that I was not taking the medication. She recommended that I see a psychiatrist with a background in working with individuals suffering from OCD. I made an appointment with Dr. Jamie Feusner, a psychiatrist my therapist recommended, who had a private practice in Los Angeles and also worked at UCLA. During the initial assessment, he spent a full hour with me and spoke to me as if I were human instead of the fifteen-minute annoyance my previous psychiatrist treated me as. He answered my questions and made me feel comfortable. After that, I began to take medication, eventually getting up to 80 milligrams of Prozac. I remained on Prozac throughout my treatment and stayed on it for years after. Once I had begun to show little to no signs of OCD for a full year, we agreed that I would taper down and eventually come off medication. I have not taken medication for OCD in over a decade and have still managed the symptoms with the tools I learned in behavioral therapy!
Lastly, I want to talk about the “life after treatment” phase of therapy. Once I completed the treatment, it was challenging to transition back to “real life.” Now that I did not have hours of ruminating and compulsions on my schedule, that schedule was literally blank, and I had nothing to do. I had no friends, no dating prospects, was not working, and was not in school. I needed to begin to rebuild my life after treatment. I started volunteering at an animal shelter. I did it because I knew it was an excellent challenge to continue to overcome OCD. I had contamination fears around dogs (any animal, really) but also really loved them. Volunteering at the shelter allowed me to face my fears. Plus, it created some much-needed structure in my life. As a side note, it led me to get a dog of my own, Snoop (yes, named after the rapper… hey, I grew up in Long Beach. Snoop is a legend to us!) I still have to this day. I then got back into martial arts, something I enjoyed as a child and met my best friend at the dojo near my house. I took Spanish and tennis lessons, and eventually got a job at a gym. I made friends, started dating, and returned to school. Pretty soon, my life was filled and looked so much different from when I was struggling with the disorder. This was crucial to my recovery because I was now involved in so many things that were important to me, which motivated me to never prioritize the OCD rituals again!
What do you consider the biggest misconception people have about OCD?
That OCD is a quirky personality trait—or something lighthearted and insignificant.
I do not know if I will ever be able to get through to people just how damaging and destructive OCD is. There are so many life experiences, opportunities, and connections with others that I missed out on because of this disorder.
This disorder nearly cost me my life.
How can you be expected to function when it is your own brain attacking you? And it is not only your brain you are fighting, your mind has also somehow gotten your body to fight alongside it. So now you are struggling with intrusive thoughts and negative feelings—feelings of anxiety, dread, distress, shame, fear, and guilt.
I wish OCD was what people thought it was. I could then be one of those clueless people who giggles about being “so OCD” every time I use a little bit of hand sanitizer or organize the pens on my desk by color. That would have been great. All the years I lost, tears I cried, prayers for God to just take me—so I did not have to suffer anymore—would be replaced with “fun, quirky Chris” who likes to organize his sock drawer more than the average guy.
Sorry, I think my bitterness is starting to show.
It is not that I want people to feel sorry for me; I just want understanding. Understanding why I just vanished from all the people I grew up with when I turned 18. Why, for so long, I was behind my peers when it came to things like college, having a job, and my living situation. And an understanding from others on why I care so damn much about mental health stigma.
I may not understand much about lupus, or Lyme disease, or what it is like to live with autism. Yet, I pride myself in knowing enough about these disorders to realize it makes life a lot more difficult for those living with it—and I can have so much damn empathy for those living through it.
That is all I want. For this country to start treating mental health with the same understanding and urgency given to the treatment of physical health. I want my struggle and adversity to be recognized and validated. When I tell people I suffered from severe OCD, I just want them to “get it” and back off from judgment about why I am not where people expect me to be.
I feel like I went on a tangent, but to sum up my answer to your question, the biggest misconception about OCD is that it is a lighthearted condition that has people washing their hands and organizing things. Not the life-sucking, severe mental illness it genuinely is—one that destroys someone’s life until they can finally get help.
You’ve also struggled with body dysmorphic disorder (BDD). Like OCD, BDD is often misunderstood. How would you explain it to someone who’d never heard of it before?
Whew, trying to explain BDD to someone is a trip! Most people assume that someone with BDD is vain, caught up in the beauty standards determined by Hollywood, and is just overall unhappy with their appearance. However, BDD is so much more than that. The best way I am usually able to successfully explain BDD to someone is by giving an example of a disorder they are more familiar with. I typically describe anorexia, pointing out that when we look at someone who is suffering from this disorder, the sufferer thinks they are fat and overweight. However, we see someone who is severely underweight and malnourished. I point out that the individual with anorexia can look in a mirror and see something completely different from what we see—unable to see their weight for what it really is.
BDD is similar to anorexia in that someone struggling with the disorder sees a flaw or flaws in their appearance no one else sees. For instance, I saw terrible acne scarring all over my face starting in high school. I would stare at myself in a mirror, or in pictures, for hours analyzing the acne scarring I saw, attempting to come to grips with what I saw as my “terrible skin.” In a panic, I began scheduling multiple appointments with a dermatologist, hoping to repair the blemishes I saw. However, no dermatologist saw acne scarring on my face and struggled to help me.
In addition to seeing flaws in my skin that were not there, I also felt grotesque—as if my face was not put together right. I believed that certain parts of my face were “off” and my appearance was jarring to others. I hated how I looked so much that I spent years in isolation because I did not want anyone to see me. I would only leave the house when it was dark, and I usually wore a hooded sweatshirt to cover most of my face. I also refused to take pictures. In fact, in my mom’s office at work, she would replace my sister’s picture each year with a new school picture. However, since I refused to take pictures, my mom had a photo of me up from my freshman year in high school, and that photo remained up there for years since I refused to take any new ones. She told me once that a co-worker inquired why she always had new pictures of my sister and none of me—even wondering if I had died. It was sad, really.
Similar to OCD, with BDD you become obsessed and preoccupied with intrusive thoughts—only in this case, the thoughts all centered on my appearance. One thing that irks me about BDD’s misconceptions is thinking that feeling “fat” is having body dysmorphic disorder. Many female celebrities come out and say they do not like their body and claim they are suffering from BDD. In reality, most BDD sufferers struggle with aspects of their appearance from the neck up, and it is not that they do not like something. It is that they actually see a flaw in their appearance that no one else can notice. There is so much more awareness that needs to be done on behalf of this disorder to dispel many of BDD’s misconceptions—especially that someone who has it is just vain.
You’ve been a big part of the OCD Conference as long as I’ve been attending. Why is speaking about OCD important to you?
Hmm, are you saying I am old? Just kidding. I aim to speak each year at the IOCDF’s Annual OCD Conference because more people in our community need assistance than those that are offering the help. There is a shortage of treatment providers—including therapists, psychiatrists, psychologists, researchers, doctors, and nurse practitioners—who know how to treat OCD properly. There is also a shortage of advocates and others who have successfully gone through OCD treatment and are willing to speak about their experience to encourage others. After going through this life-changing experience, I found myself unable to leave the community once I got better. Especially since the community needs all the support it can get. OCD completely derailed almost a decade of my life, changing it forever, and it is hard for me to imagine not somehow trying to prevent others from going through the same experience.
My nephew has autism, and they have such a robust community. They have multiple organizations that offer services to the autism community. In Orange County, where he lives, they have a regional center that provides free behavioral therapy for county members who have autism. Nationally, they have major events that bring out huge crowds with news media coverage and celebrity ambassadors. We do not have that.
During my struggle with the disorder, I felt very isolated. I did not know anyone else who had OCD, nor did I know of any celebrities or prominent figures struggling with the disorder. There were not community events in my local area I could attend to feel a sense of belonging and support. The conference is more than just me speaking on a topic. The conference provides a sense of community, where once a year people can attend and finally feel “normal” and understood. After my first conference, I decided I had to be a part of that.
I actually approached the IOCDF in 2012 about creating a speaking track aimed at the young adult population after a group of my young adult peers chose not to attend any of the panels that day because they felt there were no talks aimed at their specific concerns. The IOCDF allowed us to do a young adult theme talk the following year, and due to an overwhelming response and attendance, the young adult track is now a staple each year at the conference!
Let’s say a young person with OCD approaches you and says, “I wish I could be as brave as you and share my OCD story, but I’m really nervous!” How would you respond?
I would first validate their feelings and concerns. Speaking in front of a large crowd can be nerve-wracking and scary! I would then remind them that, just as in the treatment for OCD, we are asked to place our values, goals, and ideals ahead of our fears. Our community needs more people to share their stories! There are millions of people globally suffering from this disorder, and they need to hear success stories! I speak because there were not many people speaking when I was first suffering from OCD. I heard Elizabeth McIngvale speak at an annual IOCDF conference in San Diego in early 2000. She was the first person with OCD whose story I could relate to. Just knowing someone else out there was going through the same thing made me feel understood and hopeful for my future. By Liz being brave and sharing her journey, I left that conference inspired by her words of encouragement.
What also helps me is making it less about me and more about what I am trying to accomplish. In sharing my story, I hope to let others know they can also recover from OCD. I did not come from money, we did not find proper treatment right away, I did not have an entire extended family offering support, and there were no treatment providers close to where I lived. Yet, I still did it; I still was successful in OCD treatment. I am now able to live a full life with little OCD interference. I share my story because I want people to know they can get help despite the odds against them. So if I ever feel nervous or overwhelmed about speaking, I remind myself of the people I am going to help! By focusing on them, it helps overcome any nervousness or difficulties I may be experiencing.
You’re the vice president of OCD SoCal, an affiliate of the International OCD Foundation. How did you get involved with this organization?
A couple down in San Diego County, The Hattons, first started OCD Southern California. They did much of the initial work, including finding a lawyer to create the nonprofit. However, they both were full-time therapists and had little time to get the affiliate up and running.
My mom and I were asked to present as the keynote speakers for the San Diego conference in 2011. Before the conference that year, the IOCDF approached my mom and me at a conference planning committee meeting, asking the two of us about taking over the affiliate’s responsibilities. They wanted the affiliate to be up and running in time for the conference later that year. That way, it could help promote the conference and be active for the attendees, providing local support once the conference concludes. My mom and I agreed to help out and took the affiliate as far as we could.
Barbara VanNoppen, who has been treating OCD for decades and works out of USC, eventually became part of the affiliate. We rounded up a fantastic team of individuals with OCD, their family members, and clinicians with her help. We worked on becoming more “official,” including creating bylaws, monthly meetings, and an official board. Barbara became president, I became vice president, and my mom was named event planner.
It is incredible to see how far it has grown since my mom and I first took on the responsibility of OCD SoCal. We are now one of the most active of the IOCDF’s affiliates. We span from Bakersfield down to San Diego—a vast catchment area!
Serving as vice president of OCD Southern California has been one of the most fulfilling aspects of my life. It has allowed me to focus my advocacy on a local level. One of my main goals as vice president has been to create a sense of community in Southern California. That way, local individuals with OCD, and their loved ones, have events to attend, allowing them to meet and interact with others who share similar experiences. I am proud of all that OCD SoCal has been able to accomplish!
Speaking of OCD SoCal, it hosts a conference every year, the OCD Southern California Conference. When is it usually held? What can attendees expect?
Since OCD Southern California covers such a vast area, we host simultaneous events in our three largest counties —Los Angeles, Orange, and San Diego. Past events have included an OCD Awareness Week Carnival that is held in all three counties. The carnival consists of a bounce house, face painting, spray paint tattoos, and OCD-themed games. There is also a water balloon toss, a watermelon-eating contest, sack races, clinicians providing resources, and individuals with OCD sharing their stories. We have also participated in the IOCDF’s “1 Million Steps For OCD Walk” each year and held events that screened OCD-themed movies and documentaries—including Unstuck: An OCD Kids Movie. Each year, we have also offered multiple free speakers series featuring some of the top clinicians and advocates in Southern California.
OCD Southern California’s pride and joy is our annual conference. We have modeled our local conference after the IOCDF’s annual conference—featuring a keynote speaker and multiple breakout sessions following the keynote. Each year, our keynote speaker kicks off the event. Past keynote speakers have included Dr. Jonathan Grayson, Ethan Smith—the IOCDF’s National Ambassador—and Clint Malarchuk, a former goalie in the National Hockey League (NHL). Following the keynote, we provide lunch, and attendees can attend different support groups while enjoying their meal. After lunch, there are breakout talks that occur for the rest of the conference. They feature local clinicians and advocates.
The conclusion of our conference is pretty epic! We ask all the speakers and attendees to return to the large auditorium where the keynote was held. We then facilitate a substantial, interactive question and answer segment featuring all of the day’s speakers. During the conference, we also show OCD-themed movies and documentaries, have a breakout art room for kids to hang out in—moderated by therapists to do OCD-themed art projects and exposures, and hold a clinician’s breakfast and mingle. There are also information booths operated by different local treatment centers providing information and consultations. During the conference, there is an opportunity drawing, and people can win amazing prizes! These prizes include hotel stays or famous local chefs cooking dinner for you and your friends. Additionally, we offer people opportunities to meet others in the community; this community building is a huge part of the event! Breakfast, lunch, and dessert are all provided.
The conference is all day, starting at 9 a.m. and concluding at 5 p.m. We aim to keep the cost extremely affordable—only $25 if people sign up early and $40 at the door. Keeping the cost down was very important to the board, allowing more people to attend regardless of family income. We also offer scholarships for those who need support financially, which covers the entire registration cost for them and their family.
We had around 420 people show up at last year’s conference! We have grown so large we have had to find a larger venue to house all of our attendees, speakers, and exhibitors. We look forward to another successful conference in 2021! Alison, this is me asking you to come out to that conference next year! You have to attend now that you have been asked publicly.
You and your mom played a big role in the documentary Uncovering OCD: The Truth About Obsessive-Compulsive Disorder. People were touched by your candor—how did it feel to be so honest sitting right next to each other? What has the response to the documentary been like?
First off, any advocacy I can do with my mom is an honor. I love that woman. I would not be where I am today without her. She was strong when I was not; she made sure I found help and got better. She is just as much a part of my journey as I am, so when we can share our recovery experience, I jump on that chance.
Additionally, my good friend Ethan Smith, the IOCDF’s National Ambassador, was the director and helped produce the documentary. I trust Ethan with my life; I knew he would do an incredible job. I trusted his vision and was honored that he asked us to be a part of it.
The shoot was extremely comfortable, and it helped to film with both my mom and Ethan present. I did not know how open my mom and I would get on camera. My mom is not used to being filmed and is not as comfortable speaking publicly as I am (I think she is incredible at it; she is extremely hard on herself). However, Ethan made both of us feel incredibly comfortable, and thus, we were able to open up. It was hard talking about some of the painful periods of my life with my mom next to me. Notably, when discussing taking my anger out on her and opening up about my suicide attempt. I still hold a lot of shame and guilt for the way I treated her when I was struggling. Also, when I think of all the sacrifices I forced her to make, especially mentally and financially. We had not talked this candidly about my struggle since our keynote nine years prior. However, there was something different about sitting next to each other and opening up in such an intimate setting. The shoot felt like a therapy session, and I remember leaving feeling drained and needing sleep—but in a good way!
When the documentary premiered, I was in awe of the final edit. There were so many amazing advocates featured in the documentary. Also, Ethan’s story is always so moving to me. Although I have heard it before, I always learn something new about him and am proud of his journey. I was proud of everyone featured in that film. People with OCD are such strong and amazing individuals. I believe Ethan captured that on film beautifully.
The response to the documentary has been incredible. My mom and I host a free Family and Loved One’s OCD Support Group each month with over two hundred members. Many of the families in our group watched the documentary and told us that it gave them hope. Hope that their loved one too can get better if they get the proper treatment. Many parents who watch the film relate to my mom’s struggle and look to her strength as guidance for how they too can help their loved one. People have reached out to me via email and social media as well to leave kind messages. Any family who was touched by the documentary made opening up old wounds worth it.
Additionally, I feel as if I heal more and more each time I open up. I was proud to be part of that documentary and even happier that my mom and I could do it together.
What’s it like being an OCD therapist during this global pandemic? How have you been dealing with all of the changes and uncertainty?
Saying that it is challenging to be a therapist during this global pandemic is the century’s understatement. I have had an influx of patients needing to return to therapy, in addition to starting with new clients. With OCD, uncertainty is the most challenging concept to live with. We want 100 percent reassurance that something will turn out positively. The whole basis of ERP is accepting the unknown and moving through the anxiety. However, we are currently in uncharted territory. No one on this planet is certain of what the future holds. Now, more than ever, clients have to embrace the uncertainty and focus on what they can control, letting go of things they cannot. This has been very difficult for many with OCD, and they are looking for guidance from myself and other treatment providers.
I have been working with clients to go back to the basics of treatment. If their fears are COVID-19-specific, I have them use the Centers for Disease Control and World Health Organization guidelines on how to keep themselves and their family safe. We practice reducing compulsions that go above and beyond those guidelines. I am also working with them to accept uncertainty and doubt. Additionally, I am encouraging clients to reduce their media intake so they do not become overwhelmed with everything that is occurring. I have also been helping my clients create a new “normal” lifestyle under the current restrictions. This includes creating structure, staying in contact with friends and family utilizing current technology, staying active with OCD exposures, incorporating some form of exercise, and being present and mindful—taking life day by day.
As for me, it has been a challenge. My priority has been my clients, so I have not had a chance to stop and focus on coping with the current situation. I am working six, sometimes seven days a week, and have not stopped to check in with myself. Additionally, I am now being asked to do many of the behaviors I was told never to do because of the coronavirus—including using hand sanitizer and cleaning wipes, wearing gloves and masks, and frequently washing my hands. I almost feel “bad” when I do it, even though I know I have to, because my therapist told me never to do them again. So, it has been weird to have to take them up again.
Also, seeing other people in public rushing to get out of the store, grabbing items from the back of the pile, wipe off carts, and other cleaning rituals, is odd. When I struggled with contamination OCD, I never saw what people saw when they witnessed me doing all of those rituals publicly. Seeing “normal” people do many of the routines I did when I was at my worst is surreal. Now I know what I looked like all those years panicking in a store, trying to get in and out quickly, while struggling to do as few compulsions as possible.
Lastly, when I was at my worst, my life looked similar to how it does now. Back then, I isolated at home and only went out when I had to, such as when purchasing items at a store. Granted, I am working and interacting with people virtually, which is very different from when I was at my worst with OCD. But overall, it feels similar. I live alone, so I have been incredibly lonely during this time. It has been hard not to go out, be around people, or have the freedom to leave my house. Being at home alone, only leaving when necessary, brings me back to some of the worst times.
With all that said, I completely understand why it is so necessary for all of us to stay safe, so it is easier to accept this lifestyle than when I was doing it due to OCD obsessions. Additionally, I am happy to see the OCD community come together to support those in need. The Peace of Mind Foundation, the International OCD Foundation, OCD Gamechangers, The Mighty, the IOCDF affiliates (including OCD SoCal), and other organizations offer so many resources and community events to provide support for our community. I know together we will all get through this. This is a fleeting moment in time, and I look forward to reconnecting with all that matters to me once this passes. I am learning to take it one moment at a time and create a new normal, creating the best life I can with the current restrictions. Most importantly, I am relying on acceptance and embracing the unknown instead of trying to change it. Also, lots and lots of comfort food. Although, that is probably not a healthy coping mechanism…
If you could offer just one piece of advice to others with OCD, what would it be?
Now that I have written my manifesto for your blog, I want to leave everyone reading this with the following advice: If you are starting to suspect you have OCD, act on it now! Please, do not wait until you are severe like I did. The longer you delay, the more difficult it is to overcome OCD. Also, that is more of your life wasted at the hands of this disorder. Start your recovery journey off by visiting http://www.IOCDF.org/find-help, just as my mom did all those years ago. This allowed me to find someone trained in the specialized treatment for OCD. There is a tendency for us to downplay our symptoms or fight the disorder on our own. As someone who has gone through this journey, that is not easy. It will be much more manageable with a trained professional as your guide.
If you are further along in your journey, know that the fighting is all worth it. My life was at a complete halt when I was suffering from the disorder. After treatment, my life is so much fuller. I am a therapist specializing in treating OCD and related disorders—including BDD, anxiety, and depression. I am vice president of OCD Southern California and a lead ambassador for the IOCDF. I also had a successful career as an on-camera entertainment news reporter for some of the nation’s top media outlets. I continue to do this on a part-time basis for an international media channel. I have friends and a close relationship with my family, I date, and I enjoy life. I am not saying all of this to brag about my accomplishments; I want to let you know what is possible with treatment.
For those who have finished your treatment, now it is time to heal. Accept the years that feel “lost” to the disorder and shift that focus on how you will rebuild the life you envision—now that treatment has concluded. Advocate, speak out, share your story, and help eliminate the stigma around mental health. Giving back to the community will help make sense of your struggle.
Lastly, you are incredible. You are also strong. No, seriously. People with OCD, and other comorbid disorders, are some of the strongest people I know. I am honored to be a part of this community and to be speaking to all of you today. It will all work out, it has to, and I hope to be reading your OCD recovery journey one day soon on Alison’s blog.