Written by IOCDF Advocate Katy Marciniak. Learn more about our advocate program. You can use the IOCDF’s online Resource Directory to locate a trained clinician near you.
I couldn’t share my thoughts with anyone. When my OCD unexpectedly crept up on me as a child there were a few things I felt in my core to be true. The thoughts weren’t to be shared, people wouldn’t understand, and there was something wrong with me. I didn’t know what I was experiencing but I was beyond convinced this was not occurring in anyone else’s brain. So beyond attempting to get reassurance or disclosing some to my parents, the things that were going on in my head were to live in my head and I was to figure out how to navigate that world. I tried to do that for over a decade. Navigating through undiagnosed OCD, with no understanding of what was happening. I had no clue I had a mental illness, much less one with effective treatment. Eventually I crumbled under the weight of it all, and after finally realizing I had OCD and attempting to receive help that was ineffective, I finally ended up in the office of an OCD specialist. The last thing I wanted to do was share my thoughts and struggles with a therapist, but quite honestly I think I was even more scared of where my life was headed if I didn’t.
My life changed going forward from there. Finding the appropriate provider and effective treatment immediately had positive impacts on my life. I learned how to fight my OCD. I learned how to relate to the thoughts in my head. I realized that life could be different and I bought into it. I wanted to work to get every bit of my life back from this disorder that had taken so much. I worked through layer after layer of my OCD in individual therapy, and gained so much freedom from my OCD. It wasn’t easy, and there were plenty of ups and downs, but I continued to make progress over time. There was something I always struggled with though: The loneliness and isolation of having OCD. I spent a lot of my life alone in my head with this disorder, and despite having this amazing therapist who was helping me win my life back, I often still felt like my OCD was something to be ashamed of. OCD therapy can be both challenging and exhausting. I had no one outside therapy to connect to when I was struggling with the mental burden of going through ERP therapy. I didn’t have someone who truly knew what the OCD journey felt like.
My therapist suggested I try group therapy to feel less alone. He was met with a resounding no from me for some time. I had convinced myself there could be no benefit from being surrounded by others with OCD. I wasn’t sure I could relate to others with OCD and I wasn’t buying into the idea that there were other people out there that just might understand what I was experiencing. I had no idea how much I needed to experience being in a room with other OCD sufferers, who just got it. I’m not even 100% sure of what I was so scared of, but I knew showing up to group therapy was going against what my brain had told me for so long: You have to do this alone.
I think it was months later, my therapist nudged me in the direction of group therapy once again. I hesitantly decided to give it a try, despite being terrified to go. It was a huge exposure for me to show up to those meetings, and I really struggled with it for a period of time. For weeks I sat straight faced in those sessions, and just listened, not sharing much about my story. I admittedly struggled with the stigma of being a person who went to group therapy, and there were sessions where I sat actively trying to convince myself all the reasons why I didn’t need to be there. The sessions initially felt really overwhelming. It was hard for me to piece together why it was so challenging for me to be there in those moments. I spent a lot of those first few sessions in my head trying to navigate the emotions and triggers that were coming up and trying to find it in me to truly show up. In hindsight I don’t think I allowed myself to be okay with the fact that it just felt hard, because it was in fact hard to be vulnerable in front of others after years of not discussing my OCD with pretty much anyone. I was unsure of what parts of my story to share, so I often chose not to share at all. Gradually things changed. I realized I benefited from sharing the aspects of my journey that I felt compelled and comfortable to discuss in the moment. I didn’t connect with everyone there, nor did I have to, but there was something very therapeutic about truly recognizing I was not the only one experiencing this disorder. Listening to other people share their experiences was incredibly beneficial. Group therapy was this common humanity component of my therapy journey that I so desperately needed to be a part of.
I look back now at my time in group therapy, and I really see it as this unexpected turning point of my journey. It made me more comfortable with owning that I do indeed have OCD, and it’s something I will have to fight on some level for most of my life. It made me realize how many different people are impacted by this awful disorder and just how brave they are in the process of fighting it. It brought to light for me that maybe I am in fact also brave for fighting my own OCD. Group therapy gave me a safe space to show up, and rather than hide the parts about myself I hated for so long, actually allow them to be in the room and part of my story amongst more than just my therapist and I. I started to embrace the vulnerability that comes with sharing my own story more after group therapy. Most importantly I finally realized on a grander scale I wasn’t alone, I didn’t have to do it alone, nor did I want to do it alone anymore. I needed some connection within the OCD community outside my individual therapy sessions, and group therapy truly opened my eyes to that.
One of the most challenging parts about having OCD is the way in which it makes you feel isolated. Unfortunately I think the longer you go undiagnosed, that shame and isolation can exponentially grow. Group therapy doesn’t have to be a part of your journey, but as someone who tried to do it alone for quite some time, I highly recommend seeking out some level of connection with the OCD community. Join an OCD support group. Connect with someone on social media. Go to a conference. Put yourself in situations where you can realize you aren’t alone. You don’t have to shout your story from the rooftops. You don’t have to be an advocate. You can choose to who and what you disclose, but do know there are others out there who get it, and hearing “I get it.” or “You got this.” from another OCD fighter is worlds better than trying to navigate this disorder alone. Having a few others around me who understand OCD obviously hasn’t cured me of my OCD, but it has helped me feel more empowered and supported in fighting my OCD. All OCD sufferers deserve that.
Thank you for sharing 43 years old have suffered pretty much my whole life with ocd finally looking to seek help does anyone know where a group meeting might be around orange county ny
This is our page with information on support groups: https://iocdf.org/ocd-finding-help/supportgroups/ you’ll be able to search locally there.
Any advice on how to encourage my 15 yr old daughter who suffers w OCD, (Panic disorder & ARFIID) to seek community support groups for teens?