Uncertainty, Perfectionism, Scrupulosity
The Freedom of Uncertainty
By Tia Wilson
I’m Tia. I’m a loud, artistic free-spirit and feel the most myself when I’m meeting new people or loving the ones I already have. I am super passionate about growth, laughter, and color. I’m a burnout social justice advocate fueled by sit-coms, painting, swimming, mocktails, and good conversations. I also carry around some acronyms: diagnosed with OCD, ADHD, C-PTSD, SPD as well as a number of physical health conditions- particularly EDS. I’m a content creator (links below) and love sharing my story!
I must be perfect
My first memories are of OCD. I remember being a toddler, hardly old enough to know how to read, putting myself in timeout because I had thought “bad thoughts” about hitting my little brother again. I still remember the carpet, worn from countless prayers. I would sit there on the floor because I didn’t think I deserved the soft bed. Not when I had unkind thoughts. I’d intentionally bring on the feelings of guilt because that meant I was “repenting”. I’d purposefully bring back the image of me hitting him- so I could feel that atoning guilt. I let it flood over me, bringing back that nauseous feeling. If I didn’t feel it enough, I’d have to start over, this process could take hours.
I was the teacher’s pet, the example for the rest of the students. I found relief in counting my steps and washing my hands and was praised for being thoughtful. All the while I daydreamed about a life where I didn’t have to be perfect, one where God would accept me for who I was because I didn’t know any better. Oh, how I wished I didn’t know any better.
Over the years, the symptoms expanded. The guilt started mixing with fear. Utter panic at the thought of being imperfect. Nauseating fear at the idea of losing those I loved.
I would fall asleep every night holding a safety whistle in my hand in case there was an earthquake. The “emergency food storage” under my bed consisting of graham crackers and water was the reason our house got mice… and I got cavities.
I would retrace my steps walking home from church, trying to get just the right symmetry in each step.
Regret kept me up at night: friends’ feelings I may have hurt, ants I may have stepped on, hurt birds I couldn’t save, sins I may have forgotten. Luckily I had a remedy for this, if I was always repenting I could never be sent to hell, right? So whenever I felt guilty (or even felt guilty for not feeling guilty) I would pray and remember everything bad I’d ever done ever since I was a kid “just in case” I had forgotten to repent for it before. This repeated guilt would eventually lull me to sleep.
OCD kept expanding as I grew. Grabbing onto everyone from siblings to crushes to religious leaders. Grabbing onto everything from school to sports to music.
And I kind of felt happy! I was able to keep up with the demands of the OCD and in an odd way I was comfortable.
But then there was middle school. And classic “gifted kid syndrome” hit: I suddenly had to study for the grades I wanted, practice to keep my first in state medal in irish dance, work to keep friends amidst the popularity contest.
And with undiagnosed ADHD, I wasn’t equipped. I started falling behind. To anyone else, I was still a talented girl, but to me it wasn’t good enough.
OCD had finally started to catch up.
The severe impact on my health
I started getting sick. Like, really really sick. It started with knee pain and soon I was hardly able to walk. The fatigue, stomach pain, migraines, and full body pain soon followed and by age 15 I hardly left my bed. We tried everything. I was shuttled between doctors and flown out of state, but despite the countless medical appointments and growing bills, no one seemed to be able to piece it together.
The pain only seemed to worsen, no matter what we tried. And while my family and doctors panicked, I felt guilty for feeling a small sense of relief.
Now I had an excuse to be imperfect: a reason to stop dancing or accept my grades. But soon the pain swallowed me and desperation set in. The pain was too vivid and the uncertainty made the possibilities even scarier. I would stay up terrified I wouldn’t make it to morning, praying desperately for a miracle, and trying to avoid the intrusive dreams that made me feel out of control. The pain felt like each nerve was standing on end and after enough doctors couldn’t find anything wrong, I started to silently blame myself.
What if I had overreacted? What if it was all in my head? What if I really was the attention-seeking teenager the doctors had implied?
I grew more and more distant. I don’t remember ages 14-15 because of the severe dissociation I experienced trying to cope with that pain. I found out later that some people in middle school thought I was an urban legend or had even died because everyone seemed to remember me but I was never around. In that dark depression I kind of wished they were right.
Eventually we found doctors that would listen and I was diagnosed with some severe genetic conditions. Conditions that typically didn’t cause this amount of pain this young, but had set in early- most likely due to stress and trauma.
At age 15, I felt utterly alone. My only companion was God but I was convinced he was disappointed in me, so it turned into a toxic and desperate relationship. Reading scriptures for hours on end, replacing laughter with somber contemplation, becoming paralyzed in the face of even the smallest decisions.
While my grades fell apart, my health continued to worsen, the thoughts seemed to come more and more. I started seeing a therapist to cope. In my limited tween vocabulary and understanding I described the intrusive thoughts as voices. I talked about avoidance and sudden shifts in mood. I watched her write her suspicions on a whiteboard. I asked that she include OCD on the list and I’ll never forget the dissonant feeling I had seeing her erase it. Dissociative Identity Disorder and PTSD were my diagnoses instead. I started receiving religiously-fueled memory regression therapy disguised as EMDR. I started watching my mental health decline STEEPLY. I stopped trusting everyone around me due to the false memories she was “uncovering”.
I thought I was going “crazy”. All of these pent up emotions started surfacing and I didn’t trust anyone, including myself. I watched those around me have seemingly normal high school experiences, while it took me 2 hours to drive the 15 minutes home from school because of countless compulsions. I was giving strangers a ride home because I felt responsible for them, lingering in the halls to make sure everyone was okay, taking last-minute turns because my brain told me I might get in a wreck if I didn’t, and even driving short bursts of time with my eyes closed in desperate prayer.
For fear of worsening my chronic health, my OCD started grabbing more and more onto food and contamination until I was hardly eating. Again, I sought help and was diagnosed with an eating disorder and prescribed talk therapy. Treating the wrong thing, my mental health again began a rapid decline.
Despite my severe joint pain, I was spending hours upon hours every night pacing the house. Checking each and every door and window on repeat, rehearsing wild scenarios like what I’d do in a hostage situation or even what I’d say if I was on a talk show. “Just in case” was my motto. I should give this stranger a ride home from school- just in case. I should skip this party- just in case something bad happens.
It was only once my OCD started physically endangering me that I finally started recognizing something was seriously off. I remember one night I slid off the road due to icy conditions. Panicked at the thought of someone else getting hurt and it being my fault, I started knocking door to door asking for rock salt. Returning with a shovel, I stood out there in the dark of night, numb fingers chipping away at the ice. Two separate cars came within inches of hitting my body. I was embarrassed and confused. While I didn’t know it, the OCD was driving me and things felt hopeless.
Making a choice
By now, I’d reached college and was into my first relationship. The fear of not following God’s plan led me both to an ill-fitting engagement and later an emotionally abusive relationship. It was this second relationship that finally broke me. Again, I knew something was seriously wrong. I stopped leaving my house, showering, eating….
I remember talking to my dad, asking why everything seemed so hard. How come I couldn’t clean my room or go to class like my peers? There were countless times I’d googled the simplest of tasks because they felt so inaccessible. All of my past experiences circled in my mind and something within me knew it was OCD.
I bought a workbook and as I read through the symptoms I started to sob. My most secret and shameful intrusive thoughts were all written out there on a page. And there was a treatment.
I immediately enrolled in an ERP program. When I showed up with a stack of handwritten papers “proving” I had OCD, they pretty much diagnosed me on the spot.
Every fiber of my body fought it: Was it worth the cost, what if it didn’t work? What if I can’t do it? What if I’m wrong and it isn’t OCD? Luckily I had amazing friends and family who pushed me on the days I couldn’t push myself. I jumped all in. My therapist had to hold me back because I was so eager to kill the OCD that I would try to go overboard with exposures.
It was the most exhausting experience of my life. I was privileged enough to be able to take a leave of absence to fully focus on ERP. I would spend hours every day sobbing and screaming in my car, wrapped in a wave of all the unprocessed emotions from a life of avoidance.
The most notable memory I have from ERP is when I was doing swearing exposures. In my religious upbringing, swearing was strictly sinful and disrespectful, though my OCD took this to a whole new level. I was so scared to lose control and accidentally swear that I’d stopped leaving the house. It took weeks of daily exposure until I worked up to one day where I was sitting outside, writing the F-word on a piece of paper while I quietly said it out loud. I started gaining courage and my pen pressed firmer into the paper. My voice got a bit bolder. The word grew bigger and bigger until I was standing up and yelling at the top of my lungs. My friends inside the center laughed, smiling at my progress. I remember staring up into the sky, doing the one thing that scared me most, tears streaming down my face, smiling ear to ear. And it all shattered.
I started on a journey to find myself for the first time. I felt like a blank slate after ERP and that was very uncomfortable. With lots of work and exploration, I’ve been able to gain a really solid sense of self.
The uncertainty I’d spent my whole life running from now feels exciting and liberating. I don’t need to know “for sure” before I move my feet. I GET TO MAKE MISTAKES. And that’s horrible and amazing all at the same time.
I’ve had blips, relapses, and new traumas. But I’ve never felt more equipped to handle those emotions. If younger Tia could see me now I know she would faint in shock because she wouldn’t be able to process all the change. But she also wouldn’t be able to fathom all the joy I’ve found. All the fulfillment, community, and growth I’ve encountered. And all of it came by taking risks.
While OCD is never cured, I entered treatment 37/40 on the Y-Bocs scale aka “clinically severe”. I now test 3/40 which isn’t even clinically diagnosable. I’m my own agent. And OCD gets wimpier every day.
To hear more from me, visit my Instagram @tortillawilson, blog www.tiawilson.org or attend the support groups I run here at NOCD! You can also find me on NOCD’s Tiktok @treatmyocd!
NOCD therapists can help you
If you're struggling with OCD, you can schedule a free 15-minute call today with the NOCD care team to learn how a licensed therapist can help. At NOCD, all therapists specialize in OCD and receive ERP-specific training.