Managing OCD: A Path to Recovery Through Vulnerability
Some individuals hear detecting obsessive-compulsive disorder (OCD) and feel an enormous feeling of relief. Others feel a feeling of panic or fear of isolation. In some cases, the diagnosis may be the first time someone’s ever heard those three words strung together. Hopefully anyone struggling with OCD today realizes that they are not alone. Others are managing OCD every day.
Obsessive-compulsive disorder is defined by the International OCD Foundation (IOCDF) as a “mental health disorder that affects people of every age group and walks of life, and occurs when an individual gets caught inside a cycle of obsessions and compulsions. Obsessions are unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings. Compulsions are behaviors a person partcipates in to try to eliminate the obsessions and/or decrease his or her distress.” These intrusive system is 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 wish to better appreciate this illness, the International OCD Foundation is an amazing resource to help guide your trip.
Managing OCD: My Story
When I was 12, I had been diagnosed with OCD along with other psychiatric disorders like depression and general anxiety disorder (GAD). At that time I did not know anything about OCD and actually, didn't take it very seriously. Despite the fact that I had been battling with 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 have been times I discovered myself counting or physically tapping to try to “maintain the obsessions.” In 2023, I'd certainly one of my worst anxiety attacks and a cycle of vicious, ruminating, intrusive thoughts. It had been then which i finally reached out to a friend and OCD advocate. I have guided to the path of better understanding this disorder and lastly joined a growing community of survivors and advocates. Today, I am proud to announce that i'm an OCD advocate. I'm ready, with my community, to help educate about and de-stigmatize this issue.
The best way to understand OCD would be to review and research available resources online. It helps to hear first-hand from the people that experience it every day. Here are excerpts from a conversation I'd with Tori Sasaki, a London-based graduate student and OCD advocate. (And something of the super-amazing friends I met online through this community.)
Interview with Tori Sasaki: A discussion on OCD Recovery, Advocacy, and Vulnerability as You Find Your Voice
When had you been diagnosed with OCD and how that experience was for you?
“I was diagnosed just under annually ago-it's still pretty recent. I've advanced significantly within the last year. I believe as a lot of people experience, right after diagnosis, [there] would be a huge sense of relief. I had no clue before what was happening, I figured I just had GAD (General Panic attacks). But there is this other thing that doesn't make any sense-why shall we be held doing these things? I did not actually understand 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 to me. I went to a psychiatrist and that i said I think I've GAD and OCD and she’s like, 'yup.' After the diagnosis there is a huge sense of relief. I started therapy less than two weeks after diagnosis. “
“After the feeling of relief, there was a huge disappointment because I realized ERP was going to be considered a large amount of work. ERP can be terrifying because it involves facing your fears without doing stuff that make you feel better. Treatment is tough in itself. [I] saw improvement after which struggled…[then] 5 -6 months into treatment I saw an enormous shift. OCD will make you feel like you don't have a lot of choices. It can make you are feeling trapped and confined in your own head. The therapy reveals what you can do to reside your lifetime by yourself terms, and that's priceless.”
What is ERP and what's Its Role in Managing OCD?
Tori mentions a treatment module called Exposure and Response Prevention, or ERP for brief. The IOCDF's website describes ERP as the following:
“The Exposure in ERP refers to exposing yourself to the ideas, 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 happen to be ‘triggered.’ All this is done under the guidance of the therapist in the beginning-though you will eventually learn how to do your own ERP exercises to assist manage your symptoms.”
Other than ERP/therapy, what were the constituents of treatment?
“I was doing ERP, going to therapy, as well as in general doing CBT (cognitive behavioral therapy) for GAD. The majority of my focus was on ERP and OCD. The Instagram community has been so helpful…individuals who accept OCD and understand [are] invaluable resources. [It] makes you feel less alone, validated, and support[ed]. You could have the most supportive friends/family/partner in the world but they can't understand what it's enjoy having OCD firsthand.”
“I just want them to understand; I would like them to understand just how terrifying it is. How real the fear is. I want these to understand it's difficult. They can't truly be in our shoes. But continuing to locate people who live through OCD and those experiences is super important. Acceptance has played a huge role in my recovery-it's type in every way. You have to be prepared 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 be a much more comfortable [and] more openly vulnerable since going to treatment and connecting using the online OCD community. You will never be truly seen or truly see other people if you’re not vulnerable. Being vulnerable is showing parts of yourself you have difficulty with or you are sensitive with or [that] are difficult to talk about or are opening you to attack. I think that area of the reason I discovered such a connection with the OCD community online is that I have been vulnerable and since other people have been vulnerable.”
What does recovery mean for you?
“When I began 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're also able to struggle and make a mistake sometimes. [Y]ou are able to get yourself back on track and…in a position to move through those mistakes inside a healthy way as opposed to allowing it to get you backwards. Also [you are] not feeling so trapped-feeling much more freedom. It's ironic I guess-I felt so much freer throughout a lockdown inside a global pandemic than I have felt for a long time. 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 without anyone's knowledge.”
“I used to think, 'Oh If only I did not have this. I wish I possibly could be done with it. If only I could live my life where I wasn't thinking about OCD ever.' I don't believe that is ever going to be for me. I think it will be there in the background; it just needn't be something I listen to all the time.”
“Most cases of OCD in adulthood aren't likely to disappear completely. For a lot of people, you are going to wind up managing your symptoms throughout your lifetime but in wherein doesn't dominate your life or dictate that which you do. “
What does becoming an advocate mean to you?
“I would say it is a couple [of] pieces. One, spreading awareness is really important and help[s] people realize what OCD is actually like. It's combating the unhelpful stereotypes that surround OCD. Whether it helps people experiencing OCD [who] have no idea 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 believe another part of it has been honest and open and vulnerable-forming connections and helping provide support. Setting boundaries is important-I am not really a therapist as well as 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 let them know how to proceed. But I can provide support and resources I've come across which are helpful. I'm able to refer people to whatever they need to be referred to-IOCDF website, online ERP school, or hotline. It comes down to 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 the fact that advocacy isn't just slowly counting on yourself as a resource; it calls for mining into what's benefited you and providing and sharing those resources as well. It's showing passion for others and setting parameters for support; after 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 superb illustration of the way a diagnosis can be a portal to some realm of opportunity-through our own unique healing journeys and also the desire to fortify a residential area. It's important to remember wherever you are on your trip, that your experiences are valid and they matter. There's a community of parents ready to support you with open arms and empathetic hearts.