One thing I was really looking for when reading stories on the NOCD site was a story that looked like mine. I was trying to find where my story fit in among others’ and I was struggling to see my experiences represented. Because of this, I want to share my story here so that if there are other people out there struggling to see themselves, maybe they can relate to mine.
Since 2011, I have been in traditional “talk therapy,” but even though I would sometimes feel better for short periods of time, I wasn’t staying better. The franticness of the thoughts and feelings would always return. I felt like we always talked about my problems through the lens of trauma when really there was more to it. It would take over ten years, but in 2021 that would all change.
I knew the thoughts I was having were stressful, and I knew most people didn’t think the same way I did. I was replaying every single thing I ever said over and over again in my mind for hours, thinking about how I could’ve said it differently, or if I could have possibly offended someone. When I saw a new psychiatrist, I finally had the courage to speak up and talk about the way my brain worked, but it was difficult to share. Initially, I didn’t tell her everything. I wanted help but didn’t feel like I could be fully honest. I was so afraid of sounding “crazy” or being told I would have to be committed.
Being honest felt too risky.
I left that appointment and felt extreme guilt over not being 100% honest. That led to me compulsively confessing over email to get rid of the anxiety I was feeling. At the next appointment, the psychiatrist suggested looking into OCD. I had misconceptions that OCD was more about handwashing and cleanliness, so I was skeptical but ultimately agreed. This led to a diagnosis of OCD in Jan. 2022 and the beginning of my journey toward recovery.
As a child, I remember that I never wanted to be away from my mom. I was always worried something bad would happen to her and I wouldn’t be okay because she was my safety. Occasionally, I would be okay with my grandmother watching me, but no one else. One time, my aunt babysat me and apparently I hid behind the door, crying the entire day. My family likes to jokingly tell stories about this, not realizing how it can be a painful reminder of the OCD I dealt with so early on in my life.
In kindergarten, I cried the entire first two weeks of school. It was extraordinarily scary for me. I never outgrew the fear of being away from my mother, and back-to-school season was always anxiety-inducing. I was a super anxious kid, always overthinking what I wanted to say and how to say it. I felt that I needed to “know” for sure that whatever I said was the right thing to say and would not hurt anyone’s feelings. I was so concerned about that and went through my childhood remaining very quiet due to this fear. I rarely raised my hand in class even if I knew the answer. I suppose I thought it was better to say nothing than to potentially say something wrong. I was convinced that being wrong would lead to ridicule and I was terrified of being seen as stupid. To this day, I still prefer to do things behind the scenes.
One time in elementary school, I grew hysterical because of a conversation between my parents. It was meant to be an innocent discussion involving their wishes at the end of their lives, but it was a traumatic experience for me. My mom had stated that she would like to be cremated while my dad wished to be buried. I panicked. I needed them both to want the same thing – we all needed to do the same thing. I needed complete certainty that everyone agreed or I couldn’t handle it. They managed to finally calm me down somehow, but that calm didn’t last. Before I knew it, I was back out there with my parents, insisting that they say everything all over again exactly the way they just said it so I could record it. The conversation had to be recorded so that if and when the anxiety arose later, I could confirm the certainty with the recording. This was an early example of the reassurance-seeking component of my OCD.
In grade school, I also experienced trauma in the form of sexual abuse. After the abuse, I remained silent. At times, I would act out in school in small ways because of this, but never enough to get in serious trouble and never enough that anyone realized what was wrong. It’s only been within the past five years that I felt comfortable finally telling my parents the truth. During this period of my life, I became adept at not feeling my feelings, which only added fuel to the fire for my OCD. This is an important part of my story and looking back, it may have impacted my experience in more ways than I realized at the time. I know that the OCD was present even before this experience, but I also wonder if this shaped some of it in some ways.
In my childhood home, there was no air conditioning, so we slept with the windows open. This terrified me. Constant nagging thoughts of kidnappers or killers breaking in and taking me, or hurting those I loved, flooded my mind. I would stay awake for hours thinking about this. I wondered if anyone else ever lay awake at night thinking about these things. But I was always too afraid to ask out of fear of being labeled weird.
As a teenager, there was a period of time when I felt the need to go everywhere with my parents. This was the age where I should’ve been wanting to be more independent and separate from my parents, and finding out more about myself, but this was not the case for me. I was especially afraid of them getting into a car accident. I felt like if I wasn’t there to protect them by looking both ways again and again, something bad would happen. But if I was present, I could somehow stop the bad things from happening.
I didn’t tell anyone what my mind was saying.
It might sound strange to not know you had OCD for almost fifty years, but growing up in the 80s, no one really questioned it. I was anxious, sure. That’s how it was always described. I don’t know that we even knew OCD was a thing. If we did, it wasn’t talked about.
At 20 years old, I married and had my first child at the age of 21. This short-lived marriage produced two children and ended after just a few years, but through it all, he never knew what I struggled with. After the divorce, I threw myself completely into being a mom and that became my whole identity. While raising the children, I stayed busier and the thoughts seemed to quiet down for a while. Occasionally, a new obsessive thought would pop up and bother me, but it wasn’t all that “sticky,” and I could let it go easier.
After the kids were grown, I noticed some of the behaviors I had when I was a kid returned. I started pre-planning conversations in my head before I would say them, and if they didn’t sound perfectly right, I wouldn’t say anything at all. I was also replaying conversations over and over in my head after they happened, in what seemed like an attempt to find imperfections. Could I have said that better? What could I have said differently?
I had a lot of obsessive thoughts. My mind seemed to shift from theme to theme. I spent a lot of time ruminating and was overly concerned about how others perceived me. I wanted to be certain about my own feelings in every interaction and I focused a lot on making sure things felt just right. I questioned everything: what was the “right” way to feel at any given moment? Was I acting in any way that others might consider “weird”? I became so focused on being perfect, that I would shut down and isolate rather than attempt to communicate any further. Perfectionism is one of the primary themes across my OCD. It has kept me from trying new things that I may have otherwise enjoyed and even impacted my job. What if I am no good at it? What if I fail?
I believe now that I have relationship OCD, and it’s affected my ability to maintain friendships or feel brave enough to pursue romantic relationships. I have always been a people pleaser who tends to question my role in relationships and never wants anyone to be unhappy with me. I never feel “good enough,” so I mostly keep surface-level relationships. I’ve also always been an introvert, but not everyone knew it was deeper than that. However, when I realized this had carried over into how I interacted with my own children, it really bothered me.
I lost many friends over the years because my compulsions drove them away. I needed constant reassurance that no one was mad at me. I sought out that quick fix of relief from whatever anxious thought would bother me at any given moment. Then I’d become angry at myself for feeling like a failure, at which point sadness would flood in.
Self-compassion is not something that comes naturally to me.
Fears surrounding God and religion also bother me. Again, the idea that I’m not good enough creeps in, and sometimes during church services, I just want to walk out. I don’t actually want to leave, but the intrusive thought to get up and leave gets “stuck” in my brain. Now, I’m willing to sit in the distress the thoughts cause and I stay regardless because my church and God are important to me. But this was not always easy.
I started compulsively reaching out to therapists and psychiatrists seeking constant reassurance that I was normal and not crazy and hadn’t disappointed them. I would have to tell them every single distressing thought or event that happened in my day as soon as possible. If I didn’t, I would spiral downward. This became out of control. I would try so hard not to reach out, but the distress would be so high I’d wind up doing it anyway and then be so upset with myself that I’d given in. This would lead to me being mean to myself for feeling like I failed.
I also began to struggle with skin picking and hair pulling. I was biting my cheeks really badly. This was a practice I developed both to remove perceived imperfections on my body and to redirect my anxiety toward something I could control. At this time, I was feeling pretty out of control with regard to my health. For several years, I hadn’t been feeling well physically – it was so bad it was like I was just existing without living. I did what I needed to do: I slept, I ate, and I was able to function at the bare minimum at work. For a while, I changed doctors several times because it felt like they were never listening to me. They acted like it was all in my head and dismissed me as soon as they heard I had OCD. Sometimes I even questioned it all myself. Was I making this up?
I had intrusive thoughts about cancer and dying. I worried they were going to miss something important and it would be too late to help me. So, I compulsively scanned my body for any signs or signals for every small ache and pain. This might have been OCD, but it was OCD made worse by the fact that they weren’t taking me seriously.
In June 2023, my worst fear actually came true: they found cancer.
Although I had been in ERP therapy at NOCD since January 2022, I struggled to use my tools consistently. It seemed like my health struggles played a role in this – the worse I felt physically, the easier it was to spiral and feel like there was no hope. But when the doctors discovered a cancerous growth, I suddenly realized the only way I was going to get through it was by using my skills. My OCD was feeling validated that my worst-case scenario had become real. I felt like I had two choices here: either I leaned into taking things one step at a time, or I would be consumed by the massive amounts of distress brought on by hearing that news. It was during this time I realized that when push came to shove, I had all the knowledge and skills I needed. I just had to use them.
The cancer diagnosis actually helped me to embrace treatment more consistently, because if I can face cancer, I can do anything.
My brain wants me to worry constantly and to spend countless hours spinning in my mind. It cycles through intrusive thoughts until it finds one that sticks and then replays it over and over. I learned through therapy that I can say, “Okay brain, we don’t need to think about that right now.” Over time, the less attention I gave these thoughts, the less they had a hold over me. Slowly, I began to release the mentality that I needed to fight the thoughts until they went away. I stopped arguing with them. It only made them louder when I tried to engage with them.
I know now that thoughts are just thoughts that come and go and I can trust in my values.
I have learned that I can either worry about that stuff or choose not to engage with the thoughts – just let them be there and not try and figure them out. A few other skills I find helpful include practicing mindfulness and using my five senses to ground myself back in the present moment. I only write down one word to describe my feelings or what’s going on in my mind so I’m not getting sucked into ruminating, explaining, or needing to figure it all out. I tell my brain, “That might happen. Or it might not” and I refuse to seek out a definitive answer. I’ve also gotten to a point where I can delay reassurance-seeking and confessing until the need feels less urgent or sometimes dissipates altogether. Focusing on each step, one step at a time, I stay in the present moment more often. Currently, I’m prioritizing giving myself more compassion, because I know I’m not as awful as my OCD has always tried to convince me of. I’m a work in progress.
Some days are better than others, but recovery is a journey, and I refuse to give up.
I feel like I have the motivation to live my life again. Before treatment, I had just been going through the motions. Now I can truly say that I am experiencing joy again. I have been getting out more. I envision possibilities now. I’m even laughing! At work, I stepped outside my comfort zone to accept a new position and this has been a positive experience for me. I’m so much more relaxed and chill. The world is out there for me and I’m excited to figure out who I am now, apart from being just a mom or a person with OCD.
A healthy outlet for expressing my emotions has been creating art. I love painting and drawing. Art has been the pathway to sharing my thoughts and feelings in a meaningful way for me. By getting my emotions out on paper, they don’t seem to fester as much. Sometimes during a therapy session, my therapist would use different analogies that really resonated with me, and I would want to create them. If she said something I felt was profound, I would make beautiful artwork from it. I now feel capable of learning new things. I have a renewed sense of hope. Even if something is not perfect, I will do my best and it will be enough. OCD isn’t going to rule my life any longer. I’m in the driver’s seat now!
If you’re reading this, I want to encourage you not to give up on yourselves, because recovery is possible. I’m living proof. Even if you think you’re not progressing, you might be listening and learning, and you might surprise yourself with the knowledge and abilities you have when it really comes down to it. I believe you’re always taking in more than you think. Don’t get stuck comparing yourself to others. Healing isn’t linear, and your progress is your own, no one else’s. Your journey is unique to you.
