Radically different
In 2016, the American Academy of Pediatrics issued a policy statement urging doctors to offer medications for opioid use disorder to adolescent and young adult patients who needed them.
New national data show that more young people with an opioid use disorder diagnosis did start receiving addiction medications like buprenorphine and methadone, but the increase was small. And the number of young people who stayed on medication for six months — already quite low — may have actually decreased.
By Vinay Krishnan
My OCD has always manifested itself through a debilitating fear of harm coming to loved ones and to myself, a subset of OCD called Harm OCD. This showed up most prominently after the September 11th, 2001 attacks in New York. The violent imagery and loss of life stuck to my brain and sparked all sorts of hypothetical violent intrusive thoughts and threats that I’d spend hours imagining every day, to which I would respond with repeated mental and physical reassurances of safety (calming words and affirmations, locking and re-locking the front door). Over the following years, this cycle of obsessions and compulsions would lead to long bouts of depression, of insomnia, and of self-harm. I was 13 on 9/11/2001, I didn’t start medication for my illness until 2012, I didn’t start Exposure and Response Prevention treatment until 2016, and I didn’t find medication that kept me stable until 2020. That is a long long time to go without feeling secure and fully functional. If I knew to see the signs of my illness and if I knew to seek treatment earlier, I could have saved myself over a decade of painful dysfunction and mental torment, and my symptoms would have been far easier to course-correct at an early age than they were later on.
Now, I’m well versed in a variety of tools that keep me safe and healthy. I know to write exposure scripts when my OCD gets intense, I know that mindfulness meditation practices help me process intrusive thoughts without getting stuck to them, and I use a combination of antidepressants and anxiety medications that keep my symptoms far more manageable than they were for most of my life. I’ve told my story in a variety of contexts and mediums–speaking about OCD for NPR, Good Morning America, and as part of the documentary An Unquiet Mind–and I work as a community organizer trying to dismantle some of the systemic barriers that prevent people from accessing and affording the healthcare they need.
Again and again, I remind people still grappling with their OCD symptoms that learning to sit with uncertainty rather than fighting it off is the key to living the life you want with OCD. If folks can learn to do that, they can engage in whatever is most important to them, they can live joyful lives, they can hold stable jobs and provide for their families and do all the things OCD is perhaps telling them is currently impossible to do. I’m 38 now and living a life far beyond any of my expectations or dreams growing up, one filled with joy and companionship and artistry and adventure. That may all feel far-fetched to people growing up with OCD or to people just learning how their OCD works, but there are plenty of tools available now to help folks sit with doubt and gradually loosen OCD’s grip on us. I’m sending everyone some love and strength and lightness on their journey.
While every experience with OCD is different, far too many kids and families face the same barriers to getting answers and effective treatment. See what new IOCDF findings reveal about pediatric OCD care—and what we can do to change it—in Losing Childhood to America’s OCD Care Crisis.
The post If I Only Knew Then — Living with OCD appeared first on International OCD Foundation.
By Stuti Pemmaraju
I cannot pinpoint the exact moment that I first began experiencing symptoms of OCD, but my earliest recollection of a compulsion was during my fifth-grade distance learning class. The pandemic altered life for many people, and for me the biggest change was my obsessive thoughts. As a kid, I was easily scared—I would avoid watching horror movies and had a terrible fear of clowns and ghosts. During that time, those fears became intertwined with my OCD; as my compulsions got more frequent and terrifying, so did my obsessions. I found myself looking at the four corners of my room, turning the lights on and off, counting even or odd numbers more progressively, and looking behind my shoulder whenever I was alone, just to check if someone was watching me.
A few years later, middle school began, and my OCD was the worst it had ever been. Compulsions became more constant, and arbitrary thoughts quickly turned into obsessions that dictated my every move, making simple tasks seem like life-or-death situations. My OCD was controlling me, and I didn’t know that I had OCD—it never occurred to me that my thoughts were not normal. Looking back now, I recognize many themes my obsessions had taken over the years, including morality, harm, and identity fears. Every day, I somehow pushed through, mentally exhausted. From the outside, I looked like anyone else, but internally I was fighting a battle I thought everyone was expected to endure.
The conversation I had with my parents about my OCD after silently battling it for years was one of the most difficult things I’ve had to do. Mental health isn’t something that is generally acknowledged in South Asian communities, so I didn’t know how my parents would react. Thankfully, they were very understanding and helped me begin ERP therapy, which I have been doing for the past two years.
Even after coming to terms with this condition and learning techniques to fight it, I still struggled a lot this past year with frequent panic attacks and depressive episodes. It was then that my psychologist and I decided to move forward with medication.
Having OCD taught me that mental health is not linear and that there will always be bad moments. The most important thing is to keep pushing through, because not trying only makes the struggle worse. Something that helped me come to terms with my OCD was using writing as an outlet for my experiences, and finding interest in mental health advocacy and policy research.
OCD is something I navigate every day, but it is no longer something I face alone. I learned that while I cannot always control the thoughts my mind brings me, I can control how I respond to them. My message to other teenagers who are struggling is this: OCD is definitely a big part of your story, but it is not the entirety of who you are. You are so much more than your OCD, and remember that it does not define you.
While every experience with OCD is different, far too many kids and families face the same barriers to getting answers and effective treatment. See what new IOCDF findings reveal about pediatric OCD care—and what we can do to change it—in Losing Childhood to America’s OCD Care Crisis.
The post You Are More Than Your OCD — Living with OCD appeared first on International OCD Foundation.
By Julia Hyman
Knots in my youth-sized stomach. My brain pounding and constantly racing. Guilt was consuming my eight-year-old body. Those were my very first signs of OCD. I remember coming home from elementary school every day, constantly feeling like I had committed the worst kind of crime. I would confess every thought and feeling I had that day to my mom, worrying that God would punish me if I did not. I would tell her if I accidentally looked at a kid in my class’s private parts, if I was mean to another student, and if I was chastised at all that day in class. The need to be a “moral” human being, to avoid going to Hell, was all-consuming during this time in my life. Preparing for my first Reconciliation at age eight felt like preparing to go to war. I had to gather every single “sin” I had ever committed within my eight years of life to confess them to a Priest and be saved from Hell. The relief after Reconciliation was momentary, and guilt continued to consume me the moment I believed I had thought, said, or done something immoral.
My parents could not fathom why I constantly felt the need to confess every menial thing that crossed my mind or that happened at school that day. I have one really vivid memory of a time when I tried to hold off on confessing something that had happened at school that day, and how I absolutely erupted into tears right before bedtime, which is when I decided to confess it to my parents. In second grade, we had a “disciplinary stoplight,” in which we would move our name tag to yellow, orange, or red depending on the severity of our incident. One day, I was talking a lot in class, to the point where my nametag was moved to the “orange light.” My stomach was on the floor all day long, and I tried to hold off on confessing until bedtime, when my parents would tuck me in. I went through homework, dance class, and dinner before unloading what had happened that day onto my parents. I remember my parents being very sympathetic and more worried about my reaction to what had happened than the incident itself.
At this point in my OCD progression, my parents were wary of my behavior, but not quite alarmed to the point of intervention just yet. Once I turned nine years old, a new OCD theme came to the forefront, and that was contamination OCD. When I would go to the bathroom, I would wipe until I was bleeding, because in my OCD-ridden brain, blood meant clean. I would only pull up my pants after using the toilet with the hand that did not wipe and would proceed to wash my hands and arms until they were bloody, cracked, and scaly. I remember my mother starting to knock on the bathroom door every time I went to the bathroom, concerned about why I always took so long. These rituals escalated to scrubbing the bathroom floor almost every time I used the toilet, because I felt my business was seeping through the floor and infecting it after I had flushed, and to splashing the faucet a certain number of times before I could touch it to turn it off. I believe the last straw for my parents was one instance in particular, when I was sitting on the bathroom floor with the rugs pushed aside, scrubbing it and crying from exhaustion. After this instance, my parents diligently searched for a child therapist.
My first therapist would have multiple sessions in one sitting with my family and I – one talking with just my parents, one talking with just me, and one talking with all of us together. After describing what I was going through- the incessant confessing and cleaning of the bathroom – I was promptly diagnosed with Obsessive Compulsive Disorder. Following this session, my parents diligently researched and found a bunch of informational books on handling a child with OCD, and read through them. After educating themselves on the mechanisms of OCD, they began to become proactive in pointing out to me when my OCD was taking over.
They would refer to my OCD as the “bully in my brain,” and would encourage me to stand up to it. When I would start to confess something “bad” that I did, thought, or said on a particular day, they would gently redirect me to the present moment and point out to me that this was “the bully in my brain” making me feel guilty and feel the urge to confess when I did not need to. They would also try to set limits on how long I could spend in the bathroom and would knock on the bathroom door to remind me when I had been in there too long. Although their methods would work for the specific themes that they were targeting, handling my OCD became like “Wack-a-Mole.” New themes of obsessions and compulsions would arise, and they would have to adjust their approach to target each one.
Beginning in the middle of my third-grade year, my obsessions and compulsions began to be geared towards my schoolwork. I would be sitting at the kitchen table working on assignments for four to six hours straight at nine years old. I was constantly adding more words and ideas to assignments, checking assignments, and re-reading words in books and study materials. School became downright exhausting, and I would cry and have a knot in my stomach going back to school everyday, knowing I would have to overwork myself repeatedly. My parents became increasingly concerned with how much time I was spending on elementary school assignments, that they met with my teacher and therapist to discuss it. It took around five years to find a therapeutic technique that worked to limit my school and homework-based obsessions, but I finally was able to find an effective therapist who gave me efficient tools and techniques to limit copious amounts of time spent on schoolwork. My therapist, with the cooperation and compliance of my parents and I, implemented a system that would allow me to break up my schoolwork into chunks, while setting an overall time limit on completion. The method was entitled “The Pomodoro Method,” and it allowed me to work for thirty minutes to an hour straight, take a break for thirty minutes, then go back to work for another thirty minutes to an hour. The overall time limit they set for homework completion each day was around three hours, and after three hours, they did not allow me to go back into my backpack and check and/or work on any assignments. When I would ask for reassurance about my homework, my parents would try to not give an answer, to not fuel the obsessive-compulsive cycle.
Throughout my childhood years combating OCD, I was truly fortunate enough to have parents that caught onto the signs early on and got me proper help. While growing up and becoming more mature and educated, OCD themes tend to change to latch onto what is most prominent in your life in a certain moment. Finding the right OCD therapist that can pivot when themes change and provide research-based and effective OCD treatment modalities, such as Exposure and Response Prevention (ERP) and Inference-Based Cognitive Behavioral Therapy (ICBT) is crucial to understanding and combating the intricacies of OCD. Because I received effective support from several therapists at an early age, I came to understand that OCD is ego-dystonic, meaning it causes intrusive thoughts and obsessions that conflict with a person’s true values, morals, and sense of self. My OCD often centered on fears of being an immoral or unacceptable person, such as fears of being a pedophile, not working hard enough in school, or not being a clean and moral individual, despite these fears being completely inconsistent with who I was.
Furthermore, my parents and I were able to thoroughly educate ourselves on how OCD operates within the brain, and how reassurance, checking, and other compulsions only work to teach the brain that these obsessions and doubts are “dangerous” and thus must be paid attention to, when that is not the case. “The bully” in my brain- which was what we referred to my OCD as- would demand one compulsion in one minute, and once that was completed, would demand even more of me the next time I had an intrusive thought. Having parents to remind me that an urge to compulse was just “the bully” demanding more nonsensical actions from me allowed me to eventually come off the high emotions fueled by urge and re-ground myself to the present.
I am not going to lie and say that OCD is an easy fix with the methods I have described above.
It takes time, resiliency, constant ongoing education, and patience to start to retrain an OCD-ridden brain, especially as a child with a more limited understanding. Today, I am twenty-four years old and am still battling OCD. In the heat of the moment, when an intrusive thought strikes and feels real, urgent, and life-threatening, it is extremely hard to remind yourself of the mechanisms of OCD and ground yourself back to the present moment. Especially for young kids who do not understand that they have a neurological condition that is making them feel these scary feelings, it is extremely hard to discern between a true worry versus an OCD intrusive thought. The Amygdala, which is the brain’s emotion center and alarm system, flags every intrusive thought, no matter how irrational it sounds, as a danger.
My final advice to any parent reading this article is this: please give your child patience, grace, and do not make them feel “crazy” for having these thoughts. For us with OCD brains, these thoughts truly feel probable, realistic, scary, and urgent to check and seek reassurance over. Working with your child each day, with the help of a licensed OCD professional, will help them eventually to tolerate the discomfort from intrusive thoughts without responding to them, or to see them from a more grounded and rational perspective.
While every experience with OCD is different, far too many kids and families face the same barriers to getting answers and effective treatment. See what new IOCDF findings reveal about pediatric OCD care—and what we can do to change it—in Losing Childhood to America’s OCD Care Crisis.
The post Confessions of an Eight-Year-Old – Living with OCD appeared first on International OCD Foundation.