It can be a huge relief to finally get diagnosed for obsessive-compulsive disorder (OCD). But, it can also bring new challenges, like figuring out how and when to tell others about your condition—if you decide to disclose at all.
While sharing information about your condition can help make your relationships closer, it’s also understandable to have concerns about how you may be perceived. Misconceptions, stigmas and cultural beliefs can all play a part in these conversations, but learning from others who have had similar discussions can help.
Below, we’ve rounded up four stories from three OCD community members—who get real about how they shared their OCD with friends, family, and/or partners. Read on to gain insights and inspiration.
These stories have been edited for length and clarity.
Nicole Rafiee, content creator and NOCD partner
“ The first time that I talked about my OCD was with the people who were closest to me. I made the deliberate choice to only tell my inner circle, which included my boyfriend, my best friend and my mom. I’m very lucky that I felt comfortable to share with the people I’m close with. Some of them said that my diagnosis made a lot of sense.
My family is made up of Polish immigrants and mental health isn’t talked about a lot in Poland. There’s a “push through it” mentality there, so they didn’t have a really strong understanding of what I was going through. I was educating my family while learning about it myself—pulling up articles in Polish about OCD and explaining it that way.
When I got diagnosed, I thought this would be a secret I would take to my grave. After beginning treatment, I became more comfortable talking about it. Eventually, I decided to share on social media, because I realized there was a lack of content around what OCD actually looks like. I couldn’t find anybody that talked about the symptoms I had, which were more taboo, embarrassing and didn’t look like the cleanliness stereotypes that surround OCD. I was nowhere even close to recovery, but I wanted to share what I was going through.
To this day, I still don’t share all my themes publicly, but I do share a lot about my OCD. As a content creator, one of my biggest fears was that people were going to use my obsessions and themes against me. Of course, one in every however many people attempt to use it against me—but through therapy I feel prepared and ready to tackle that. I recommend not sharing anything unless you fully feel like you’re in a good place with it, but that doesn’t necessarily mean you need to be totally recovered.”
Megan Stubbs, OCD Conqueror at NOCD
”One of the hardest disclosures for me was my current partner, because a previous partner had been quite horrible about my diagnosis. They publicly shamed me on social media, saying I was crazy and should be in an institution, and publicly discussed my counting compulsions.
Even though I knew my current partner would not do something like that, I was scared I would experience that stigma again. By the time I was ready to tell them, I had just begun ERP and was coming to terms with the fact I was living with a chronic condition. I realized that anyone who makes a mockery of OCD clearly doesn’t understand how debilitating it can be, and isn’t a person that I want in my life. I got to the point where I felt that if I’m with a partner, they need to understand OCD and how to handle flare-ups.
I had caught COVID and wanted to be honest about why I was so scared of the illness. It led to a larger conversation about the reason I’m so anxious: my OCD. I don’t think my partner initially quite understood the severity of the condition, what it comes with, and how different it can look for people. But, he really wanted to understand how it affects me. That meant a lot, and since then, he has really gone out of his way to learn so much more.
It’s taught me the importance of being honest and having people around you that do support you.
Courtney Healey, NOCD Therapist
“I first disclosed my OCD to my closest friend almost immediately after receiving my diagnosis. She had seen me struggling, had seen the compulsions I did, and how distressed I became if I couldn’t do them. She’d alluded to the fact that she wondered if there was something else going on besides just anxiety.
It felt important to tell her first because she was the one who encouraged me to seek help and figure out what was going on. I felt that she was in my corner and I was comfortable sharing it with her.
I told her while I was at her house and we were eating dinner. I shared that I was struggling with it and—at that point—was not even sure if it was the correct diagnosis. She was supportive and it made me feel validated and seen.
Telling other people was easier after that; however, I made sure I felt ready and safe before doing so. It took a while, as I struggled internally with the diagnosis, but it became something I was much more open about after seeing the support from my loved ones.
This is your journey and story, and you have the right to tell people that story when it feels safe for you. Never be ashamed of the diagnosis and the strength it takes to seek help!”
Bottom line
OCD can be debilitating, and talking about it can bring up feelings of shame. But, having conversations with loved ones can be a crucial step toward releasing that shame. Because many people are very under-educated on the condition, these conversations can sometimes become opportunities to raise awareness and help others learn—but it’s also okay if that’s not a position you want to take on today.
Exposure and response prevention (ERP) therapy can help us learn to manage our OCD symptoms, and it can also help us navigate difficult conversations around our condition. ERP teaches us that uncertainty is a major part of life, and that’s true when it comes to telling others about OCD diagnoses—we can’t control or predict how anyone will react. But, showing up to these discussions with patience and the knowledge that you have the power to share only what you want can make a big difference.
If you’ve decided to share your diagnosis with others, congratulate yourself for taking this step. And, if you don’t feel ready to tell your story today, know that that’s a perfectly alright decision, as well. Your OCD journey should move at your own pace—whatever that means to you.
