Photo by Priscilla Du Preez on Unsplash
Some individuals hear the diagnosis of obsessive-compulsive disorder (OCD) and feel a huge sense of relief. Others feel a sense of panic or fear of isolation. In some cases, the diagnosis is the first time someone’s ever heard those three words strung together. I hope that anyone suffering from OCD today realizes that they are not alone. Others are managing OCD on a daily basis.
Obsessive-compulsive disorder is defined by the International OCD Foundation (IOCDF) as a “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. Obsessions are unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings. Compulsions are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease his or her distress.” These intrusive thoughts are often categorized as themes (like relationship OCD or harm OCD). This helps individuals better describe and cope with these disturbing and unwanted feelings.
If you are newly diagnosed or just want to better understand this illness, the International OCD Foundation is an amazing resource to help guide your journey.
Managing OCD: My Story
When I was 12, I was diagnosed with OCD and other psychiatric disorders like depression and general anxiety disorder (GAD). At the time I didn’t know anything about OCD and in fact, didn’t take it very seriously. Even though I was suffering through most of my young adulthood and post-college years, I simply dismissed the problems. I let my OCD fester and secretly control my life.
Most of my compulsions were mental. But there were times I found myself counting or physically tapping to try to “maintain the obsessions.” In 2020, I had one of my worst panic attacks and a cycle of vicious, ruminating, intrusive thoughts. It was then that I finally reached out to a friend and OCD advocate. I have guided onto the path of better understanding this disorder and finally joined a growing community of survivors and advocates. Today, I am proud to announce that I am an OCD advocate. I am ready, with my community, to help educate about and de-stigmatize this disorder.
The best way to understand OCD is to review and research available resources online. But it also helps to hear first-hand from the folks who experience it on a daily basis. Below are excerpts from a conversation I had with Tori Sasaki, a London-based graduate student and OCD advocate. (And one of the super-amazing friends I met online through this community.)
Interview with Tori Sasaki: A Conversation on OCD Recovery, Advocacy, and Vulnerability as You Find Your Voice
When were you diagnosed with OCD and how that experience was for you?
“I was diagnosed just under a year ago—it’s still pretty recent. I’ve come a long way in the last year. I think as a lot of people experience, right after diagnosis, [there] was a huge sense of relief. I had no idea before what was going on, I thought I just had GAD (General Anxiety Disorder). But there is this other thing that doesn’t make any sense—why am I doing these things? I didn’t actually know what OCD was before. I actually was watching a “Mind Explained” episode on Netflix, where I heard someone talk about OCD for the first time. Even though the symptoms were different – that sounded right to me. I went to a psychiatrist and I said I think I have GAD and OCD and she’s like, ‘yup.’ After the diagnosis there was a huge sense of relief. I started therapy less than two weeks after diagnosis. “
“After the sense of relief, there was a huge disappointment because I realized ERP was going to be a lot of work. ERP can be terrifying because it involves facing your fears without doing things that make you feel better. Treatment is tough in itself. [I] saw improvement and then struggled…[then] 5–6 months into treatment I saw a huge shift. OCD can make you feel like you don’t have a lot of choices. It can make you feel trapped and confined in your own head. The treatment opens up your ability to live your life on your own terms, and that’s priceless.”
What is ERP and What Is Its Role in Managing OCD?
Tori mentions a treatment module called Exposure and Response Prevention, or ERP for short. The IOCDF’s website describes ERP as the following:
“The Exposure in ERP refers to exposing yourself to the thoughts, images, objects, and situations that make you anxious and/or start your obsessions…the Response Prevention part of ERP refers to making a choice not to do a compulsive behavior once the anxiety or obsessions have been ‘triggered.’ All of this is done under the guidance of a therapist at the beginning—though you will eventually learn to do your own ERP exercises to help manage your symptoms.”
Other than ERP/therapy, what were the components of treatment?
“I was doing ERP, going to therapy, and in general doing CBT (cognitive behavioral therapy) for GAD. Most of my focus was on ERP and OCD. The Instagram community has been so helpful…people who live with OCD and understand [are] invaluable resources. [It] makes you feel less alone, validated, and support[ed]. You can have the most supportive friends/family/partner in the world but they can’t understand what it’s like to have OCD firsthand.”
“I just want them to understand; I want them to understand just how terrifying it is. How real the fear is. I want them to understand it’s hard. They can’t truly be in our shoes. But continuing to find people who live through OCD and those experiences is super important. Acceptance has played a huge role in my recovery—it’s key in every way. You have to be willing to accept hard things or difficult feelings.”
Vulnerability and finding your voice—how does that play into your experience managing OCD?
“It’s really crucial. I’ve become a lot more comfortable [and] more openly vulnerable since going to treatment and connecting with the online OCD community. You can’t really be truly seen or truly see other people if you’re not vulnerable. Being vulnerable is showing parts of yourself that you have difficulty with or you are sensitive with or [that] are hard to talk about or are opening you to attack. I think that part of the reason I found such a connection with the OCD community online is that I’ve been vulnerable and because other people have been vulnerable.”
What does recovery mean to you?
“When I started out treatment my attitude was, either you’re struggling or you’re recovered. Recovery means that you’re able to manage your symptoms on a day-to-day basis—but that you are also able to struggle and slip up sometimes. [Y]ou are able to get yourself back on track and…able to move through those mistakes in a healthy way as opposed to letting it take you backwards. Also [you are] not feeling so trapped—feeling a lot more freedom. It’s ironic I guess—I felt so much freer during a lockdown in a global pandemic than I have felt for years. Not a lot of physical freedom—freedom in my own head and my own mind. That’s a huge part. And letting OCD just be there in the background.”
“I used to think, ‘Oh I wish I didn’t have this. I wish I could forget about it. I wish I could live my life where I wasn’t thinking about OCD ever.’ I don’t think that will ever be the case for me. I think it will always be there in the background; it just doesn’t have to be something I listen to all the time.”
“Many cases of OCD in adulthood aren’t going to go away completely. For a lot of people, you’re going to end up managing your symptoms for the rest of your life but in a way that doesn’t take over your life or dictate what you do. “
What does being an advocate mean to you?
“I would say it’s a couple [of] pieces. One, spreading awareness is really important and help[s] people realize what OCD is really like. It’s combating the unhelpful stereotypes that surround OCD. Whether it helps people experiencing OCD [who] don’t know it or [helps] family and friends help their person more and understand a bit more and be able to identify it and help somebody treat it. And I think another part of it is being honest and open and vulnerable—forming connections and helping provide support. Setting boundaries is important—I am not a therapist and even therapists on Instagram can’t provide therapy on the platform.”
“I can’t give personal therapy advice, I can’t solve anyone’s problems, I can’t tell them what to do. But I can provide support and resources I’ve come across that are helpful. I can refer people to whatever they need to be referred to—IOCDF website, online ERP school, or hotline. It’s about coming together as a community to educate people and make people feel less alone.”
Setting Parameters for Support
What I’ve learned from speaking with advocates like Tori, is that advocacy is not just slowly relying on yourself as a resource; it involves mining into what has benefited you and providing and sharing those resources as well. It’s showing love for others and setting parameters for support; at the end of the day we are humans who need to recharge and renew. Being an advocate is an entryway to new resources: step into one resource, discover a well of knowledge.
Managing OCD: The Takeaway
Tori is a great example of how a diagnosis can be a portal to a world of opportunity—through our own unique healing journeys and the desire to fortify a community. It’s important to remember no matter where you are on your journey, that your experiences are valid and they matter. There is a community of folks ready to support you with open arms and empathetic hearts.
