Obsessive-compulsive disorder (OCD) is an often misunderstood mental health condition, affecting about 1 in 40 adults and about 1 in 100 kids and teens. Unfortunately, many people suffer for years before receiving the proper diagnosis, often due to the misconceptions surrounding the disorder. In fact, when my parents first sought help for me, I was nearly misdiagnosed with schizophrenia at age 6.
“There is a public misconception that OCD is just a minor personality quirk or preference and that everyone is ‘a little bit OCD,’” the International OCD Foundation reports. “In reality, OCD is a serious and often debilitating mental health disorder that affects people of all ages and walks of life, and occurs when a person gets caught in a cycle of obsessions and compulsions.”
Understanding OCD: 8 People With Obsessive-Compulsive Disorder Told Us Their Stories
In honor of OCD Awareness Month, I’ve been working to break the stigma against this debilitating disorder—one I’ve struggled with nearly my entire life.
Last week, I had the pleasure of sharing my personal OCD story with you. This week, I wanted to platform and elevate other voices in the community. I spoke with multiple OCD warriors about their unique experiences with the disorder. Here’s what they shared.
1. ‘It truly is the most emotionally torturous thing I’ve ever experienced’
“I was already doing some compulsions by the time I was in first grade, but it was mild. When I was 9 years old, my OCD went from mild to completely debilitating overnight. I now know the reason for this was that I have Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), which is an immune-mediated cause of OCD.
“It’s mind-boggling that OCD is joked about in our society, because it truly is the most emotionally torturous thing I’ve ever experienced. Some thoughts I’ve obsessed over throughout the years are if I actually loved my partners, what my sexuality is, if I would develop schizophrenia, shouting inappropriate things in public, impulsively jumping out of a moving car, and a million more things. These may be things other people have thought about too, but for me they were relentless and very distressing.” — Elise, @theocdopus
2. ‘It kept me from leaving the house’
“My ‘just right’ OCD can be so debilitating. For much of my life, I have felt panic and deep discomfort when things were not exactly as they should be, when they were not ‘just right.’ It could be anything, such as how objects were arranged, how people interacted with me, or how situations unfolded around me. It created this constant sense of a binary cliff, where things were either right or wrong, with no middle ground.
“That way of living was exhausting and painful. Even in my relationships, if something did not feel ‘just right,’ I would spiral into panic and distress. It cost me relationships and caused distance between me and people I loved. My need for everything to be controlled and perfectly aligned stopped me from appreciating life as it was. It kept me from leaving the house. It made eating difficult. And it forced me to see the world through a rigid and polarizing lens.” — Matthew Antonelli, IOCDF Director of Operations
3. ‘Living with relationship OCD can be debilitating’
“Living with relationship OCD can be debilitating. You ricochet back and forth between wondering if you even like the person you’re dating and then wondering if they even like you. There could be nothing wrong in the relationship, but your OCD tries to pick it apart. I’ve found understanding it better and where it originates from, and getting tools from therapy has helped significantly.” — Anonymous OCD Warrior
4. ‘I’ve ended up in the ER in pure panic’
“I’ve struggled with OCD since I was a kid, although I wasn’t officially diagnosed until my late 20s. It was always masked by my anxiety disorder and a lack of understanding of what OCD actually entails. The reassurance-seeking behavior started after I got sick and developed emetophobia. I began constantly asking my family whether the two things I was eating would go together in my stomach or if they’d make me sick, among other things. My compulsions mainly became rumination and reassurance, which are often the most overlooked. While I showed signs as a child, it wasn’t until my last year of college when I started having more ‘stereotypical’ compulsions, like washing my hands eight times or needing to run my clothes through the washer three times, that my family and I realized what was really going on. While I was able to conquer those physical compulsions, the mental ones have stuck around.
“For the last three years, I’ve dealt with health OCD and anxiety after being triggered by some unexpected deaths in the family. I’ve ended up in the ER in pure panic, convinced the worst was happening. The fear was so real that I truly felt like my life was in danger. I would spend hours thinking about every little ache, discomfort, or sensation in my body, spiraling about what it could mean. I’d have intrusive images or mental ‘what if’ scenarios about illness or death, vividly imagining my worst fears playing out. I would also constantly ask my family and boyfriend to check certain body parts to make sure everything looked normal, my eyes, my legs, and more. While I’d get reassurance for a bit, I would ultimately end up worrying until I felt physically sick, which only made me feel worse. I couldn’t reason with my mind because no explanation was ever enough. Something had to be wrong.
“On top of it all, I often felt a deep sense of guilt for feeling this way, like I should be able to control it. It became an endless cycle until I started medication, which helped quiet the thoughts. I never [realized] how much time I’d spent ruminating until my mind was no longer consumed.” — Olivia, OCD Warrior
5. ‘My brain turns every choice into a high-stakes dilemma’
“My OCD makes decision-making virtually impossible. Whether it’s figuring out what to eat for dinner, how to word a text, or which jeans to buy, my brain turns every choice into a high-stakes dilemma. Right now, as I plan my wedding, I get stuck on little details that somehow feel huge because nothing ever feels ‘just right.’ Will my bridesmaids feel beautiful in the dress color I chose? Will everyone’s hair fall out by the end of the night if I go with one hairstylist over another? Is our hotel room block too expensive for our guests? All of that rumination can take the joy out of moments that are supposed to be exciting, and it’s frustrating because I want to be present and enjoy them.” — Anonymous IOCDF Staff Member
6. ‘I didn’t fit the stereotype’
“Growing up, I was often described as superstitious or just anxious. My mind was always wandering, caught up in what I called my ‘worst-case scenarios.’ I would imagine all the things that could go wrong, especially the ones that might stop me from reaching the next exciting milestone in my life. I was always wondering if something I did that day might somehow change my fate and keep me from experiencing everything life had to offer. As I got older, I sought help and was diagnosed with Generalized Anxiety Disorder.
“It wasn’t until I went through pregnancy and a difficult postpartum period that I received another diagnosis—OCD. I had never considered that I might have OCD because I didn’t fit the stereotype: I wasn’t overly tidy, and I didn’t engage in visible rituals. Those were the only traits I’d ever associated with the disorder. But after meeting with several psychiatrists, I learned that OCD can manifest in many different ways.
“I realized that my constant need for verbal reassurance from my partner and repeatedly checking my alarm—five or six times in the span of two minutes—were actually my own forms of ritualistic behavior. The obsessive thoughts about something happening to my newborn if I dared to close my eyes while she slept finally pushed me to seek serious help and begin medication. Now, almost two years after my official diagnosis, I’ve found a treatment plan that truly helps.” — Anonymous OCD Warrior
7. ‘OCD traps me in my mind’
“OCD pulls me from precious time with my young son and forces me to try to find solutions to unsolvable problems. If a rumination spiral only lasts two or three days, it’s a relief. OCD traps me in my mind and prevents me from being the mother, wife, colleague, and person I want to be.” — Rachel Crofut, IOCDF Director of Communications
8. ‘OCD has made my life smaller’
“I would say that I’ve had OCD my whole life. When I was around six, I had a really intense fear of throwing up and had a phobia about being at school and vomiting, so there was a period of time where I just completely stopped eating and then refused to go to school. I remember I had to eat lunch in the nurse’s office because being in the cafeteria was so intensely stressful.
“As an adult, I feel I have OCD themes around mainly developing food allergies and the fear that I’m losing my mind and have schizophrenia without realizing it. My compulsions are avoidance and reassurance; I’ll ask questions to people around me a million times until it feels ‘right.’ I honestly didn’t realize I had OCD until I was diagnosed in my mid-20s! I thought I just had really bad anxiety. I’m finally trying ERP therapy through NOCD and hoping to work through a lot of my themes because I definitely feel that OCD has made my life smaller.” — Anonymous OCD Warrior
The post 8 People With OCD Told Us Their Stories to Help Shatter the Stigma appeared first on VICE.
