The illness that haunted my life

You can be whole again. You can live an amazing life. I promise.

My name is Lillie, and I, just like most who are likely reading this, am on my journey of recovery from OCD. And it’s been quite the journey, to say the least. OCD has been the fight for fucking my life, but I’ll get into that later. I realize that this illness has followed me and haunted me for my entire life, but it wasn’t until much later that I realized what it was.

When I was a young child, I had a loving family, all of my needs met, went to the best schools in my city, and my life was seemingly the “ideal childhood.” Except, I always had a nagging feeling like something was wrong with me. Even as young as 4 or 5 years old, and probably even before that. I felt like I was an outsider looking in with my peers. Things bothered me that didn’t bother anyone else. I just, for lack of a better term, didn’t feel right. I felt like I didn’t belong and despite being an outgoing and extroverted child, I couldn’t shake that something about me was different.  I worried more than the average child and was very meticulous…about everything. I was obsessive and impulsive (and compulsive, obviously). I was told that “I cared way too much” and “bothered by things that aren’t worth being bothered by” by teachers and peers. Kind, I know. Everything had to be “right” or else I would have a full blown meltdown. For example, I would arrange Barbie Dolls, Polly Pockets, and American Girl Dolls in a very particular way and my older brother would move them around just to be annoying and I would have a MELTDOWN. I mean, a screaming and crying meltdown. At my fourth birthday party, everyone was walking in and out of my room and touching my things. I was in full-blown panic, meltdown mode. I would write and rewrite things over and over and over and over again until they were “perfect.” I would count and recount things over and over until it was “right.” I never got a damn thing done in school. Ever. Homework was such a source of anxiety. In early high school, I sat in the lobby of the athletic building after school with a piece of my friend’s schoolwork who had beautiful handwriting, and wrote and rewrote words, until I had brand new handwriting because I thought mine wasn’t perfect enough. Test taking was just…hellish. I was, without fail, always the last person to finish a test, and not for lack of knowledge. “Am I doing this wrong?” “I need to have perfect handwriting.” “I have to erase all of this and rewrite it.” “I’m going to fail out of high school and end up on the street and just die.” “How do I get out of taking this test because I’m going to fail it.” And because of my OCD, my grades did suffer. They didn’t suffer drastically by any stretch of the imagination, and I would somehow make it onto my school’s Honor Roll each semester; but, since my grades were not all A+’s, I developed more anxiety around school. I was a serial procrastinator because I didn’t want to feel the anxiety of doing schoolwork, but had to get the work done eventually, so I also didn’t sleep. I was what some like to call, a vicious cycle. I’m not quite sure how I made it out of high school alive, and I’m not being dramatic.

I went through phases where some obsessions would bother me less and something new would bother me. For example, I started to worry that my heart would stop beating in my sleep and I would jolt out of my bed and run laps around my room to increase my heart rate. At that point, perfectionism wasn’t bothering me as much, but new obsessions were forming in the process and old ones were festering in the background. Everytime the phone rang or the doorbell rang, I thought it was someone coming to tell me that my parents died. I asked my Mom (a nurse) if I had a stomach ulcer before my freshman year of high school because I was having stomach pain. The summer before my Sophomore year of high-school, I developed a fear around getting a brain tumor. I began to get dull migraines and was hell-bent convinced I had a brain tumor. I have a friend named Jane and an Aunt Jane and my parent’s mentioned Jane, talking about my friend, and I thought they were talking about my Aunt. That was the final straw and that mix-up MUST have meant I had a brain tumor. A few months later, my school had an assembly about childhood cancer and childhood brain tumors. All the fears and uncertainties about it came flooding back in this theater. I began to get light-headed and dizzy. I was clenching my entire body and lowkey hyperventilating. As soon as the assembly was over, I got out of there as fast as I could. I ran up the stairs of the building and into the hallway of the dance studio (I am a dancer and was about the have class there). I ran into my two favorite teachers, my dance and theater teacher, and just broke down in tears, went into the dance studio to calm myself down with my team, and then blacked out as I sat on the ground watching my team. It still took me two more years to figure out that I had OCD. Spoiler alert: I didn’t have one. But, if I did, now, I could handle it. That’s the difference.

Backtracking a bit, I have been a dancer my entire life. When I was in 4th grade, I began competition dance which is rigorous and time-consuming. I loved it, but I was also miserable at the same time. Typical rehearsal attire for competition dance is a sports bra and booty shorts AKA minimal clothing. It’s basically like wearing a bikini. In 6th grade, I started to see someone in the dance mirror that wasn’t really there. I was 12 years old, 95 lbs, and stick skinny. However, I saw FAT (let me add, there is absolutely nothing wrong with any weight and every weight is beautiful). I started calling myself “fattie” and degrading myself in the mirror. I then began to avoid the mirrors altogether. I wouldn’t look at myself and if I did, it was constant rumination about how I looked and how fat I was. And I mean, CONSTANT rumination. Every thought from the second I woke up until the second I went to sleep was about my weight. EVERY SINGLE ONE. I began to count calories and obsessively exercise. Imagine dancing 15+ hours per week, being stuck in a dance studio with mirrors all around, in basically a bra and underwear, where everyone is thin and in shape and being TORTURED by thoughts about my body. I would affirm that I looked skinny from one angle, and then two minutes later call myself fat from another. It was mental juggling and mental torture. I would only check mirrors to see how I looked and the rest of the time, I would avoid them altogether. This went on for 8 years. EIGHT. I absolutely hated myself and didn’t know what they hell to do about it. Nowadays, I love my body. I’m proud of my body.

Sophomore year of high school, I began to pick my skin and my eyebrows. I picked my eyebrows in eighth grade, but I was able to stop. Until two years later, it came back harder. I would pick little acne pimples and pick things that weren’t even there. I plucked my eyebrows out until they were basically gone. It was the only way I knew how to cope with what I like to call the thunderstorm in my head. For some reason, that was my way of being in control. In my mind, picking pimples would make my skin “perfect” and plucking my eyebrows was my attempt to make them “perfect.” It did the exact opposite. I no longer pick my skin and I have some of the thickest eyebrows you’ve ever seen. In addition, I began to be a vehement supporter of gay rights and feminism. I had overwhelming doubts about doing so. I would constantly seek reassurance to make sure that my views were “right” and that it was okay to support those things.

My junior year of high school, I began to have very vivid thoughts about murdering people out of the blue–my family, friends, pet, strangers, etc. I felt like a dark cloud was hanging over me. It was constant and confusing as hell and the shame associated with having these thoughts is indescribable. I was terrified of my brain and of myself. I didn’t want to be alive anymore but yet I didn’t want to die, I just wanted to pain to stop. Why was I thinking of murdering people? I have no desire to murder anyone. I am a good person. What if I act out on these thoughts? I didn’t think that I would make it out of this alive. One day, however, I was on the way to hot yoga and stopped at Whole Foods for a juice and a protein bar. It was the most beautiful, sunny day and for once I wasn’t having the intrusive thoughts about harming others. As I was pulling into the Whole Foods parking lot, I was compulsively making a list of all of the things that I needed to do before heading off to the beach for Spring Break. I had the random thought, “I think I have OCD.” That thought completely changed everything. I, then, googled OCD. This (https://www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/index.shtml) is the article that I came upon. I remember SOBBING in the bathroom at Whole Foods because it described every single thing that I’d been going through. Having intrusive thoughts about hurting others was COMMON? That instantly made me feel so much better. The symptoms subsided for the time being after figuring this out and a few months later, I went on a two-week service trip to India through my school. With no electronics and only the company of other people, everyone got very deep about their struggles in life. I remember opening up in the back of a wagon car about my OCD and one of my favorite teachers told me, “You can take your pain and turn it into something really beautiful.” That hit me HARD. It was very healing and provided me the glimmer of hope that I needed to pull myself out of this.

Still, however, it would be a long journey of recovery. I thought that I could just convince myself that I wasn’t a murderer and that would be the end of it. That worked for a period time time, but eventually, it all caught up to me. A few months after symptoms subsiding, the thoughts of murder started to come back after watching an episode of Law and Order: SVU. They came back stronger. In addition to Harm thoughts coming back, I was going through a lot of stress in school applying for colleges that I didn’t even want to go to, turning in a really important English essay, and trying to drop a math class that my teachers were refusing to let me drop. About a week later, I had a full blown panic attack when I was driving and it scared the shit out of me. And then, boom, I woke up and I was an anxious mess. Consistently. I was in my school counselor’s office everyday having panic attacks and I thought I was crazy. All of the compulsions and obsessions of the past boiled over and OCD finally caught up to me. My OCD told me “no.” It stopped letting me run away and I was forced to confront it. I was forced to ask for help and I was forced to heal. I couldn’t just ignore this monster anymore because living with being tortured by my brain was just not an option. I made a decision to get through it. I made a decision to find the answers. And, I did.

For about 9 months, even after the onset of acute anxiety, I knew that I had OCD, but I still held onto this belief that the anxiety would just go away and I could think my way out of it. I was a senior in high school, supposed to be preparing to go to college, but in a horrible place. I had no idea that OCD required therapy or that you could recover from it. It got better for a few months, but it came back stronger again. Those were the most trying 9 months of my life. I made the executive decision to postpone college until I was recovered. Then, after a sobbing fit from being frustrated with my brain and a few panic attacks, I came across The OCD Stories Podcast. From there, I came across Mark Freeman’s “The Acceptance Field Guide.” I learned that OCD was treatable and that you could recover from it. I learned that ERP was the way to recovery. I found an amazing OCD therapist and an OCD support group. I began ERP. I began watching Mark Freeman’s videos.  From there, I began Acceptance and Commitment Therapy. My brother bought me a meditation book and I was introduced to meditation. The fog began to lift, the compulsions were being cut out, and my beliefs about everything began to change. For 18 years I was suffering, most of it silently, and all at once things began to change. Has it been an easy process? No. But it has been the most worthwhile process I’ve ever done and ever will do.

It’s also important to note that recovery is POSSIBLE. OCD is not chronic and no matter what anyone tells you, you can and will recover. Recovery isn’t ponies and rainbows. It’s hard as hell. Do I consider myself completely and fully recovered? No. I realize that recovery is an ongoing process that never stops. It’s not an upward trajectory whatsoever and there are so many moments where you’re left wondering if your brain is just out to get you and you’re stuck, and that’s okay. At times, it’s like trying to swim when you’re caught in a riptide. Some days it’s just enough to survive, and guess what, that’s okay too. You’ll get back to swimming. It’s about getting your life back. It’s about being yourself. It’s about cutting out the compulsions that are ruining your life and fueling this god-forsaken illness (I kept god lowercase as an exposure). It’s about changing the harmful beliefs that you hold so tightly about yourself, others and the world. It’s about learning that intrusive thoughts are normal and you are in control of how you respond to them. It’s not about becoming certain, but learning to accept uncertainty. “You can take your pain and turn it into something really beautiful,” in the words of one of my high school teachers. You don’t have to be a prisoner to this illness, no matter what your brain tells you. You can walk away. You can let go of the demons haunting you, no matter how long they’ve stuck around. You can be whole again. You can live an amazing life. I promise.



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