Now that I know more about OCD, I can trace the start of my struggle back to when I was around 10. I remember one time when my sister was eating an ice cube, and it stressed me out – I felt like she was going to choke on it and die. I kept asking my family, “Why are you letting her do this? I don’t understand. This is dangerous.” I could not stop staring at her the whole time, and actually grabbed her and squeezed her mouth. I could not let the incident go for hours. I realize now that little things like that were signs of OCD.
It evolved over time; it wasn’t necessarily debilitating at first, but there were little things that I noticed in my life, such as getting really obsessed and needing reassurance. When I look back, I can see that I had OCD before I knew what it was.
As time went on, I noticed it a lot in my relationships, especially in romantic ones. I would get very attached in an unhealthy way, and there was a lot of rumination. At the time I thought I was just very sensitive, and I needed a lot of reassurance. I would ask the same questions multiple times, needing to get reassurance, to make myself feel better. It’s clear to me how that can affect the other person in the relationship as well, and can even create distrust.
There were other instances, too, even in my relationships with my family. I have four younger siblings, so I grew up with kids always around. It feels like I helped raise them. When one of my siblings was a baby, I would get really fixated at night, worried that they were going to suffocate.
That was something that happened with every baby that was born as my siblings grew up. I was always so worried at night, and I couldn’t let it go. I would always get up and check the baby monitor, make sure I heard them sleeping, or go to their room. My parents didn’t even do that. Any fear of harm coming to them really worried me.
OCD followed me to college and became a bigger problem
After that, finances became a major thing OCD latched on to, especially in college. I didn’t have a lot of money, but I would constantly be checking and re-checking, budgeting and re-budgeting, running the same numbers over and over. That was a problem because I was seeking constant reassurance.
Fall of 2019 is when it became more debilitating, and I really knew something was wrong. I started having sexual and violent intrusive thoughts, 24/7, out of the blue. These thoughts were sexual and violent in nature – POCD thoughts, harm OCD, and suicidal OCD. Those were the main ones initially. These different thoughts started to come in and it created so much uncertainty. I felt like I didn’t know myself, I couldn’t trust myself. It happened at the flip of a switch. It was terrifying.
I had no idea what was going on. I honestly thought that I was a bad person and it made me think, “what if I could do those things?” I was stuck in it for a long time before getting help because I thought that I had to figure it out on my own. I felt that I had to know the truth, so my compulsions felt necessary – the rumination, the checking, the researching – to make sure I wasn’t a dangerous person.
That happened for about six months. It was on and off: it felt debilitating for a couple of months, then eased off for about a month. Then it would skyrocket back, which OCD tends to do, especially when untreated. That’s what compelled me to start my recovery journey. I saw a psychiatrist who mentioned OCD. I started looking into it and I realized: “This is exactly what I’m going through.”
Not feeling present
Even then, OCD made me doubt it. I thought, “What if I don’t have OCD and these thoughts actually mean something about me? What if I’m the one person like this who’s actually a bad person?” So that kept me from reaching out for additional help specifically for OCD initially.
The content of the thoughts also held me back – for me, each theme carried a different weight. Now I realize that I’ve struggled with so many other different themes, too: existential, just right, perfectionism. While it didn’t always seem hard for me to go to a therapist to talk about just right OCD, it felt much harder to talk about harm OCD and POCD, and any of those disturbing sexual and violent thoughts. Even though all of the themes are challenging and important to tackle, that really hindered me.
The whole time I never really felt present. On the outside, everything seemed fine, or I would let people know that I wasn’t in a good place, but without specifics. I felt very absent and disconnected, and generally, I’m a very present person. It was a big deal for me to be completely removed from my life in that way.
What I realized afterward is that I was experiencing dissociation, which can happen a lot with OCD. I was feeling like I was beside myself, kind of floating above my body. And there were other similar feelings, like depersonalization, which feels like you are not yourself, and derealization, which feels like you are not in reality. And you can imagine how scary that is, to always feel like you are not in your body. That’s what prompted existential OCD for me, because I felt disconnected from reality.
That made me start asking all different types of questions. I became obsessed with the fear that I was schizophrenic because of the existential OCD. People sometimes even refer to this theme as schizophrenia OCD, because that’s pretty common. I was researching every single day, doing quizzes, filling out these questionnaires to find out: am I in psychosis? Am I schizophrenic? Now it’s obvious to me that I was compulsively seeking reassurance. It kept getting more severe.
Starting my OCD recovery journey
Not long after that, I found NOCD. When I set up the call with NOCD, I was definitely afraid of the appointment. During the intake call, I don’t think I was as scared, because I avoided talking about certain thoughts, but the feeling of leading to an appointment scared me a lot. I started working with my therapist, and she was wonderful. She was very kind, encouraging, very mom-like: “I am rooting for you, you can do this!” I really needed that. There were a lot of times in therapy when I didn’t think I could get better, and having her support meant everything.
Exposure and response prevention (ERP) therapy is very scary, but once I started it with my NOCD therapist, I found that seeing even the smallest effects motivated me to challenge myself further. Having my therapist there by my side during the sessions made me much more comfortable and confident. And on my own between sessions, I kept challenging myself, and I always had her support then, too, and could reach out to her when I needed it.
I remember there was a time when I was doing really well in therapy, but during the span of one week, I slid completely back downhill. I felt like I hit rock bottom again. When we met up again, I told my therapist that I didn’t think therapy was working because I was back at square one, and I didn’t know what to do. That was a moment when I really thought that I was going to give up. She basically told me, “Do not stop. You have to keep going.” So I did, and everything changed from that point. And here I am.
My journey led me to help others on their own journeys
My experience led me to want to help others going through similar things, and I became a Member Advocate at NOCD. When I first started, I remember that a manager told me that I was very professional and very, very caring. When he listened, he could just tell that I was really there for people in a strong, empathetic way. That meant a lot to me.
To me, the most meaningful thing about being a Member Advocate is that most people I talk to, from my experience, have never spoken to someone else with OCD. That is tough because OCD is so isolating. Pre-diagnosis, if you don’t know what is happening, you feel like you are the only person in the world who is having these thoughts or doing these rituals or thinking in this certain way. You think you’re the only one, and you think something is wrong with you. Especially when it comes to taboo or disturbing thoughts, you feel like you cannot share them with a soul. I get it because I’ve been there.
There are a lot of things that come with OCD that people feel guilty about, only because the condition leads them to feel this way. They feel shame about the thoughts they think, the ways they cope, the things they do. It’s hard to admit. That’s why it’s so important to have someone to talk to who truly understands. Most people tell me, “It’s so great to speak with someone who actually understands why I’m thinking this way, and why I’m doing what I’m doing.”
I can also provide hope that they can truly overcome this. I know that it’s possible because I did. I can say, “I was once feeling the way you are, I was once thinking the way you are, and I was also completely hopeless. Then everything changed for me. I know you can’t see it right now – that’s okay. But you can overcome this.” And I’m here to help.