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Trichotillomania, Perfectionism, Moral Scrupulosity

My Struggles with OCD and Trichotillomania

By Lisa

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Looking back

I’ve had OCD for as long as I can remember. Looking back, I can see anxiety and OCD tendencies from as early as three years old. As a young child, one of my biggest worries was that my mom would leave me and never come back. If she dropped me off at school or she had to go to work, this intense fear triggered inside of me. I would cry every single day when I had to go to school from the time I was in preschool well into first grade. I had to carry a picture of my mom with me for comfort. I asked for reassurance incessantly, from anyone who would give it to me. 

I developed an immense fear of being in trouble. I was on edge, thinking I would do the wrong thing. This became increasingly an issue while at school. I recall that my kindergarten teacher had a behavior stoplight and it would move from green to yellow to red if you misbehaved. I was terrified and obsessed with even the prospect of it ever reaching red. 

I am a very strict believer in following rules due to what I later would identify as moral scrupulosity themed OCD. I still struggle with this. I remember as a child being afraid to play with toys that did not specifically say my age range on them. For example, if a toy stated that it was for ages 7+ and I was 6 years old then I could not bring myself to play with that toy.

I would spend hours upon hours doing school work, making sure each assignment was complete and done as perfectly as I could.  It had to be correct.

I felt like I needed perfect grades on assignments. I never missed a homework assignment and I would repeatedly write down what my homework assignments were (sometimes up to 10 times a day) out of fear of forgetting to do one. I began participating in traditional talk therapy at age 11 due to my stress and would continue with talk therapy on and off for about 10 years.  

My world first began to fall apart during my junior year of high school. My anxiety was remarkably high. What I can identify now as OCD was running rampant. I was spending hours on school work, having 3-5 panic attacks per day. I couldn’t eat lunch in the school cafeteria (I was eating in a teacher’s classroom), and I was crying daily. My functioning was limited and my world was getting smaller with each passing day. Everything I did seemed to cause intense anxiety and obsessions. I was engaging in a constant barrage of what I now recognize as compulsions.

Getting the correct diagnosis

After years of struggling, I finally received the correct diagnosis of Obsessive-Compulsive Disorder (OCD) at 17 years old. I began seeing a psychiatrist and started medication which helped me to function enough to complete high school. I started college in 2017 and things were going  well enough. I was able to manage in spite of spending hours each day on obsessions and compulsions. 

During my college years is when things started to take a rough turn again and I was unable to hide that I was struggling any longer. The pandemic hit that year and OCD and anxiety skyrocketed in my life. I developed Trichotillomania (hair pulling).  In spite of these obstacles,  I forged on.

By this point in my life I had experienced many shifting themes to my OCD. I worried about my health, about getting illnesses. I was googling symptoms. I was checking my body for any signs or symptoms. I was hyper-focused on my swallowing.  I was deathly afraid of having an allergic reaction to food. I avoided foods and only allowed myself to eat “safe” foods. I would carry Benadryl with me wherever I went as a safety net, just in case I had a reaction. I went so far as to go to the emergency room believing I was having a reaction. 

Intrusive thoughts about contaminants, particularly chemicals flooded my brain. I was afraid to touch cleaning supplies. I engaged in excessively washing my hands; worrying endlessly about raw meats and the possibility of salmonella poisoning. My brain just kept getting louder and louder with fear. Thoughts that were taboo and that went against all that I valued filled my head.   

Driving had become increasingly difficult; I was consumed with the idea of breaking a law. Thoughts about running red lights, hitting people or other cars ran through my mind. The idea of having gone even just 1 mile over the speed limit was enough to throw me into a panic attack. I began checking my mirrors constantly to ensure no one was injured at my hands.  Just as I had experienced as a child, I was compelled to strictly obey all rules and laws. There was no room for error. 

Finding ERP

During my last year of undergraduate and the beginning of graduate school I truly experienced rock bottom. To this day I am unsure how I was able to pass my classes; I was spending my waking hours obsessing and doing compulsions and I was pulling out my hair for hours each day. I needed my hair to feel “just right” in order to stop pulling it. I ended up shaving all of my hair off because it was just too overwhelming to handle.  

Enough was enough this time. I recognized I needed help and couldn’t do this on my own. I began Exposure and Response Prevention (ERP) with an OCD specialist. Unfortunately, once-a-week therapy sessions weren’t enough. So,  I put things on hold while I took care of myself. I made the difficult decision to go into a residential program. There, I started doing intensive ERP daily (several hours each day) and I was attending individual and group therapy sessions. I was learning about the conditions I had been suffering from and ways to mitigate my symptoms. For the first time, I was mastering how to control my OCD and Trichotillomania symptoms and live a values-based life. It was the hardest, but most important, nine weeks of my life. I began to see progress as I worked through my treatment plan. 

When I returned to school the following semester, it was intense. I was trying to catch up on the work I had missed and complete my assignments on time. But I was managing and even thriving. The freedom I felt is inexplicable. I no longer needed to spend hours upon hours reviewing the same work. I was no longer spending all my time on obsessions and compulsions. I felt myself slowly getting better. Unfortunately, we know that OCD often comes and goes throughout a person’s lifetime. It often gets worse during times of high stress. This was the case for me.

The following semester would prove to be more difficult as I had to put my newly learned ERP skills into action more often. Again I rallied all the strength I had within me to fight these disorders. I was completing my full-time internship at a hospital where I worked in an acute care setting. Writing my thesis and prepping for my licensure exam was keeping my time busy. I quickly started to deteriorate again. Though I was not as ill as I was pre-residential treatment, at my worst point, all I could do was go to my internship and sleep. I wasn’t able to work on my thesis or study for my licensure exam. I needed help again, and I wasn’t afraid to admit it.

Living in recovery

Thankfully my parents were there to support me. By this time I had begun to pull my hair out again, after being 7 months free from this behavior. I was disappointed because I had worked so hard to get to the recovery and management stage I had previously been in. I didn’t want to go backwards. The OCD was raging once again. I finished out my semester and the very next day I enrolled in an intensive outpatient program. There I did intensive ERP, groups, and individual therapy 5 days a week, 4 hours a day. At times, this was an excruciating process, leaving me exhausted while at the same time hopeful. I knew ERP worked, after all, it helped me so much in the past. I knew I just needed to put the difficult work in and keep forging ahead.

When I went back to graduate school the following semester I was in a healthier state of mind. I continued managing the OCD and Trichotillomania successfully. I was living my life on my own terms again. I started my internship at a public elementary school, studied for and passed my licensure exam. I defended my master’s thesis and graduated in May 2022. I am relieved that school is finished and that I was able to accomplish all that I have. There have been many times in my life when I wasn’t sure that this would be a possibility and now it is a reality.

I still worry that the OCD will return. I know that I will likely have to deal with this disorder throughout my life, but I now know that I can. I can handle the stress and the discomfort of life and tolerate it. I am stronger now and more confident in my abilities. I have the tools to manage the symptoms. I continue to work with an ERP specialist to keep OCD at bay. I still complete several ERP exercises per day. 

My advice is to learn how to advocate for yourself and for what you need. I didn’t learn this until college. Having school accommodations prior to college would have likely saved me a lot of grief throughout the years. Maybe things would have been easier for me at school. I wish I had known what I know now about how debilitating OCD and related disorders are. 

More about me

I am a recent graduate from university and a speech-language pathologist who has a passion for helping others. My hobbies include reading (I love memoirs and historical fiction), doing crafts, going for walks, and spending time with friends and family. I also enjoy conducting and presenting research on fluency disorders. I currently work part-time at a local library while I search for a speech therapy job. 

One of my favorite things to do is a  project I created called Letters from Lisa. I mail free, handwritten letters of encouragement to anyone who is struggling. I had the idea for Letters from Lisa for a while before actually starting it. I love happy mail and it truly turns my day around when I receive it. I thought if mail makes me happy, maybe it can help other people feel better too. 

When the pandemic hit, I realized that people were really struggling with isolation and that mental health struggles were being exasperated. So I started it in May of 2020, and since then I have sent over 800 letters to people worldwide. If you’d like more information on how to request a letter, head to www.lettersfromlisa.org, or follow us on Instagram @letters_from_lisa  or on Facebook at: https://www.facebook.com/lettersfromlisa1. 

Resources I have found helpful

Not Alone Notes mails free notes to people with OCD and related disorders: www.notalonenotes.org 

Humans of OCD is a platform for people to share their OCD stories (can share anonymously), they can be found on Instagram @HumansOfOCD: https://www.instagram.com/humansofocd/

I occasionally write about my experiences on The Mighty, my profile can be found here, select “stories” to read them: https://themighty.com/u/lag31

I volunteer with OCD NJ and run their social media! If you want, give them a follow at https://www.instagram.com/ocd_newjersey/

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