Being a Child with OCD, Part 2: The Middle

Getting diagnosed with OCD as a young child can feel extremely isolating. Diagnosed at just 8 years old in the early 90s, not many people understood OCD. Between teachers who didn’t (and wouldn’t) help me, and therapists who sometimes felt like they were grasping at straws, it was a real challenge. I discuss some of these struggles in Part 1: The Beginning (make sure you read that before you read that post before you read this one), where I talk about the first couple of years before and after my OCD diagnosis. This post is about the middle years…. the struggles of middle school and high school, which were really difficult for me to navigate and get through.

Before I get into my pre-teen and teen years, I just want to mention my intentions again. I’m not writing these blog posts for attention or pity, I’m writing these blog posts for many other reasons. First, I want others to feel less alone in their stories, that’s why I share so much. I also want to raise awareness for all of these conditions and disorders. And lastly, I want to continue connecting to others who understand and have had similar struggles. It’s incredibly important to me to accomplish all of these things, I feel like it’s my calling, my reason for all of this. I know I wish I had found similar stories at times in my life when I was struggling through it all.

The Middle Years

When I started middle school, things got tougher for me. I was being bullied, and on top of that, my OCD seemed worse than ever. I was a short, chunky girl, who still hadn’t grown into her body (and wouldn’t for years), and was so awkward.

In 6th grade, my stomach issues began. It started with a simple stomach virus, but after that day I was getting nauseous every single night and day. There were days I would stand over the toilet, feeling like I needed to throw up, but nothing was coming out.

Between that and my childhood best friend throwing up next to me in the car on the way back from Myrtle Beach when we were around 8 or 9, I developed a fear of vomiting, and others vomiting. It definitely wasn’t helping that I felt like I was going to throw up everyday. These feelings started giving me a lot of anxiety, sometimes leading to anxiety attacks.

Instead of getting better, my stomach problems continued to get progressively worse. I wasn’t kneeling by the toilet anymore, but my stomachaches were constant. Nausea, indigestion, pain, discomfort, you name it. As I write this blog post, I’m sitting here with stomach cramps for no apparent reason. I haven’t even eaten anything yet (and I’m not hungry), and I feel this way. I’ve had a stomachache every day for the past 25 years.

Sleepovers were hard for me, and I was rarely able to sleep at anyone’s house. There were a couple times I did it with my two best friends, but usually I’d have my mom pick me up late at night if there was a sleepover, making the excuse we had somewhere to go early the next morning. Almost every time I’d try to sleep over somewhere, I’d have to call my parents to pick me up. My friends always wanted to go to sleep early, and I’d never be able to sleep. I had trouble sleeping, even then.

Sometimes I think that’s when the Delayed Sleep Phase Syndrome (DSPS) started. DSPS is a circadian rhythm disorder where a person’s sleep schedule is delayed by two or more hours. Our internal clocks are “off”, and as a result we go to sleep later and wake up later than what is considered “normal”. 

I’d be lying in the dark at friend’s house, and my stomach would be killing me. That would cause the anxiety, which would last for hours and hours, as I laid there in discomfort and agony. Sleepovers were better off at my house, where I could at least be in my own bed.

At one point, one of my psychologists made a tape for me to play at night that was supposed to help me sleep and put me in a more meditative state. I was having a lot of anxiety at night, and sleep wasn’t coming easy. I listened to that tape for a while, but it never did anything to relieve the anxiety or help me fall asleep.

The best thing to come out of 6th grade was first hearing and being introduced to my favorite band. It started with one little song, and I was an immediate fan. Their first album became the soundtrack to the summer of 1997, and later their music became the soundtrack to my life. They were three boys named Hanson, and their music meant so much to me at 11 years old, and still today. I’ve been a fan of them for 25 years at this point, have seen them over 100 times, and I’ve had the best experiences because of these brothers. 1997 will forever be a special year to me because of them. Their music has gotten me through so much.

I went to camp that summer (and the summer following), and we all bonded over the love for this band. The next summer wasn’t the same as the first year, but the first year was one of the best summers in my life. I’ll forever cherish the memories from the summer of 1997.

By 7th grade, the anxiety from the nausea was at an all-time high. I was feeling like I was going to throw up almost every day, and it made me afraid to go to school when I felt this way. What if I felt nauseous, and the nurse wouldn’t let me go home if it got really bad? I wasn’t one of those kids who went to the nurse a lot, but I did have the experience where I felt sick and requested to go home, and was told I couldn’t.

Every morning that I woke up with a stomachache or nausea, I’d have an anxiety attack about getting into school. It would make my mom especially stressed, and get to the point where she felt sick about it. I’m sure I was a major contributor of her high blood pressure.

By the middle of the school year, the only way I could get into school was if my mom sat in the office while I went to class. She would proofread her work (she’s a court reporter) while sitting on a bench in the office, and I would go to my classes. If I felt like I needed to leave because of my stomach, I would go down to the office and we would go home. I’d check in by a certain time of day, usually around 11AM or so, and tell her she can either go home with or without me. Some days I’d leave midday with her, some days I’d finish the day until school ended at 2:45PM.

Thinking back on this deeply embarrasses me deeply. I can’t believe it got this bad. My mom is a champ, she really put up with a lot due to my stomach problems and my anxiety. Doctors were doing what they could to treat me, but it was a challenge. I was still on Prozac (and would be until I graduated high school), and going to a psychologist and a psychiatrist. Therapy wasn’t doing much to help me at this point.

I was having a lot of problems with friends in middle school, and a lot of friendships were coming and going. This led to more anxiety about going to school, because I don’t do well with drama. I don’t want any part of it, and I try to avoid it at all costs.

I had one group of friends who stayed friends with each other, but stopped being friends with me (for petty reasons I can’t even remember– proof that whatever you think is important in your life as a child, preteen, or teenager does not matter when you’re an adult). I was going to my church youth group at the time, and had invited them to join before the drama between us started.

After they decided they no longer wanted to be friends with me, I would show up at my youth group meetings at my church, and the two of them would be there, giggling about me. I was so angry that they had the audacity to still show up to the youth group meetings and activities when they didn’t even go to that church, and just started going to the meetings shortly before we had our falling out. They could literally join any other, but they came to mine.

They would try to get the youth group leaders to change their mind about me by telling them who knows what, and I was not okay with that. I asked them to stop going, after all, it was my church. It was bad enough school was a toxic place for me, but now they were making my own church’s youth group a toxic place. They refused to stop going, and I asked my mom to get involved. She called their parents and asked them to stop, and their parents didn’t see the problem, after all, it was for anyone who knew someone who went to the church. I was so upset, and hated going, but also didn’t want to give them the satisfaction, so I tried to push myself. After many months (maybe even a year), we were able to be friendly enough that there was no more drama, but we never became good friends again.

In 8th grade, I was able to get into school by myself, without the need for my mom to sit there. I still had a lot of absences though, and that didn’t help with the bullying. I was called fat and ugly, and made fun of for not being in school a lot. Some of the bullying was from people who were my “friends”, and this would continue well into high school.

Sometime during the year, I told a story to my friend and two guys that sat in front of us in science. The story took place at a restaurant named Friendly’s, and after I told that story, one of the boys started calling me “Friendly”. From that day until the end of 8th grade, that was my name to those 2 boys. I always laughed along with it, not thinking anything of it. On graduation day, my friend told me that the name was actually a dig. They called me Friendly because they “weren’t surprised I was eating” (whatever that means, everyone eats! But it was obviously a dig at my chubbiness.)

Every day in 8th grade, I was being called “Friendly”, completely unaware each time they were making fun of me. That hurt, a lot. That boy used to make other jokes about my looks, implying how ugly and gross I was, so I’m not surprised he was making fun of me the whole time. He went to a different high school, so I didn’t see him after that (although he’s actually married to a friend’s friend now), but I’ll never forget him or that dig.

Looking back, I know it’s not a huge deal. Kids will be kids. But it makes sense why I have such trouble with the way I look. And unfortunately, it’s still a story my brain clings to, as much as I don’t want it to.

At this point it was 2 years since the stomachaches started, and I was going to gastroenterologists to try to get to the bottom of it. They did all sorts of tests, including a endoscopy when I was 13. I couldn’t handle the tests where you had to drink something, because they all made me gag, and led to the fear of throwing up.

The endoscopy showed a lot of redness, and they mentioned something about the beginning of ulcers or something, but said they don’t treat that. My mom brought me to yet another doctor at a children’s hospital, and they said they did treat it. They put me on a medication to to try to help with the stomachaches and nausea. I was also diagnosed with IBS, and was told that was my diagnosis for lack of any other diagnosis, since it’s a diagnosis of exclusion.

High School

High school was just as hard as middle school, but I had some more fun during it at least. I found my group, and they became my best friends throughout high school.

The bullying continued, and in 9th grade, one kid who was a year older began harassing me in Earth Science class. It got so bad that I told my school counselor, and they told the principle. I believe he was given a day of suspension, and they called it sexual harassment. I didn’t even know that’s what it was at the time, I was a very naïve 14-year old. He was doing it as a joke though, and I still don’t know why.

It was still hard for me to get into school a lot because of the combination of stomach problems, OCD, and anxiety. My teachers were, as usual, no help.

I needed notes and my homework assignments from when I was absent, and I had a lot of pushback about it. Keep in mind, I entered high school in 1999. Things were very different back then. Not many people had personal computers, and they weren’t able to just e-mail my homework assignments to me.

Some of my teachers agreed to providing me with notes and homework assignments, but some refused, not wanting to help me in any way. I was an awkward, meek girl, who wasn’t drinking or doing drugs. I was a girl with stomach issues (and who knows what else underlying, because I did not know I had Hypermobility Spectrum Disorder/Hypermobile Ehlers-Danlos Syndrome at the time, and wouldn’t for another 20 years), OCD, and debilitating anxiety, and I was treated like a problem kid who was always in trouble with school.

I’m constantly wondering how many of the conditions I have now I had then. Possibly autoimmune disease, maybe chronic fatigue syndrome, who knows what else. I had a lot of symptoms that were going unanswered, and a lot I never brought up because I didn’t realize they weren’t normal. Sometimes I wonder if I even had POTS then, because I know a lot of teenagers develop POTS (1 in 100, it’s not as rare as you think). 

I was always active with sports outside of school. I never played for school teams– I played softball for seven years on PAL (Police Athletic League), I was on two different swim teams (for CYO, which is Catholic Youth Organization, and for a local town pool in the summer) and played volleyball in high school for CYO.

Even though I did these things, I had real trouble running the 12-minute mile in gym. I just could never complete it, and running always hurt my chest. Doctors would tell me it was normal (when I asked if I could have asthma or something, after all, why did my chest hurt nd burn?) They would never give me doctor’s notes for the mile, making me do it.

My gym teacher (who I really disliked) was a woman who was my elementary school gym teacher. I was so excited to be rid of her in middle school, only to start school to find that she moved up with us, and was now our middle school gym teacher. Three more years of her.

I would explain that I couldn’t finish the mile within twelve minutes. I could do it in thirteen or fourteen, but not twelve. Once I did it in twelve and a half minutes, but that wasn’t good enough. I had to repeat it over and over again until it was exactly twelve minutes or under. I think once she let me slide with two or three seconds over twelve, acting like she just did me a huge favor and making me feel guilty about it.

Pushing myself hurt, a lot, and left me near collapsing. Why does it matter that it’s under twelve minutes? Shouldn’t completing it in any time be good enough? I don’t know if they still do this to children today, but it was literal torture.

We had to do it every single year, and every single year I’d struggle, and have to do it multiple times. The teacher would make anyone who didn’t complete it in class feel horrible about it, and we’d be struggling to complete it while the rest of the class watched on, as they completed their miles without a problem. 

Every single year, I’d have to go after school to try to complete the mile in under twelve minutes, and every single year I’d have to go back multiple days, as it would take me many tries to finally get it. My chest burned, and my lungs felt like they’d explode, but no one cared, I was pushed until I couldn’t breathe anymore. From elementary school until the day I graduated high school, I struggled with this.

To this day, I hate to walk as an exercise (and running is out, obviously, because of POTS, but also because I still get the deep burning in my chest) because it brings back the trauma of trying to complete these miles in a certain time. I still don’t know what the burning in the chest is from.

My 9th grade Global History teacher in particular was very unhelpful. I remember telling my mom she refused to give me the notes for something, and my mom called her directly. I was sitting in the gym, waiting to take the final with a room full of other kids from my grade. She walked over to the desk I was sitting at, told me to follow her, and took me to the side.

There, she yelled at me (in front of the entire gym full of people), asking why I had my mom call her (Umm I was a kid, and she refused to help me, what else was I going to do?), and berated and belittled me. I don’t know how many kids in that room heard her, but I know I wasn’t the only one who did. I walked back to my desk and cried silently, just as the final exams were being handed out. It’s bad enough she did this, but doing this right as we were about to take our finals? Who could concentrate? I took my exam through blurry eyes.

I was having real trouble concentrating in school, and I wasn’t retaining much. I talked to my then psychologist (and many since), and mentioned that I thought I had ADD (now all diagnoses are ADHD, but then they were 2 separate diagnoses). I asked if I could be tested, and was told it wasn’t necessary, that I didn’t have ADD, it was all just my OCD. I was finally diagnosed with ADHD a couple of years ago, in my 30s, by my neurologist after he did testing on his own. I asked multiple doctors over the years, and they all refused to do the basic test to find out.

One day in a computer class I was taking in my freshman year, I was pulled out by the principle and told to come to the office. Once there, I was greeted by CPS (Child Protective Services), and asked questions about my absences. I can’t remember all the questions they asked, but I remember how traumatized I was about it. Pulling a kid with anxiety out of class and greeting them like a criminal is not the way to go about it. They didn’t believe my absences were for the reasons I was saying they were (they thought I was just a truant), and they were questioning everything. CPS threatened to take me away from my parents due to my absences, and I freaked out.

They did a follow-up at my house, and when they asked my parents where I was, thinking they’d catch me out, they found out I was in my room sleeping. They dropped the case after that, and I found out that it was possible a family member (a jealous cousin) was the one who made the call to send CPS. It’s never been confirmed, but I think that’s probably what happened. It was a traumatizing experience for me, though. The person we suspect that called knew I wasn’t a bad kid or skipping school, but she did it anyway, wasting the time of CPS, and giving me even more PTSD in the process. It was a situation that although it happened 22 years ago, I will never forget, or forgive. Not that it was ever brought up to that person (who was also in high school at the time) or an apology was ever offered anyway.

That summer, my friend asked me to join her in being in a music video for a boyband she had just seen play called Dream Street. It was July 3, 2000, and we made our way into the city to participate in this video. I’d never heard of them before, but that was the start of a lot of great relationships. We went back for a second day, and we had a blast. We made a bunch of friends, and started going to all their shows within a couple state area. My friend ended up becoming the president of their fan club (asked by them and their management), and I became the vice president. I made so many friends around this time, some of which I’m still in contact with, some who were very important to me at that time in my life. I’m very grateful for all the experiences I had for the next several years due to this group of boys. They’re responsible for my favorite memories in high school.

I also went to a theater camp that summer, wanting to get more into acting. Although the camp wasn’t the greatest, I met a lifelong friend that I still adore to this day. That summer ended up being another great one, and the following summer would be too.

At some point during these years, I found out some of the people who were making fun of me were the ones saying they were my best friends. They’d make jokes when I wasn’t there, likely just to fit in, and one friend would even make comments about my looks. The comments were things like “She only has boobs because she’s fat”, which another friend would tell me thinking I wanted to hear it. I understand wanting to tell a friend that another friend is talking behind your back, but to hear the actual words are even more hurtful. This cemented more hate about my own body.

I believed all of the negativity because I wasn’t hearing otherwise. I never had a boy who even looked at me, and none of them ever liked me. I wouldn’t have my first kiss until I was 16 1/2 years old. It’s hard to swallow when all of your friends have boyfriends for years, and you’re always the third wheel.

When I started 10th grade, my teachers were still refusing to give me notes and homework on the days I was absent. Because of this, my mom finally spoke to a lawyer about setting a 504 up for me. Section 504 was part of the U.S. Rehabilitation Act of 1973, and was designed to help students who have disabilities (as identified under the law) by providing them accommodations to assist in their learning. 

At the meeting for the 504, the principle, my mom, and multiple teachers from my high school (most of which weren’t my own teachers) were there. For these meetings, the student doesn’t attend. The reason for her getting a 504 for me was so I could get the notes and homework when I was absent, that’s it. I wasn’t requesting any special accommodations for testing, or less work, or anything else.

When my accommodations and needs were stated, one of the teachers (who wasn’t even one of my own teachers) said I shouldn’t be provided these accommodations because, direct quote, “We don’t want to enable her”. Excuse me, what?? This law was signed into existence to PROTECT people with disabilities, and this is the response I had. They were against providing me the little bit I needed, despite being at a legal meeting for it.

When all was said and done, they finally agreed to it and I got my accommodations. I shouldn’t have needed a 504 for this, but it was the only way I could get it. They threw in extra test time if I needed it and the ability to leave the room when taking a test, for good measure. I didn’t take advantage of these two things often, but if I felt I needed it, I definitely did. I also would take tests in the library when it was May and June, because that was the only room in the school (besides the office) with air conditioning. Work smarter, not harder.

Due to my absences and trouble concentrating, my grades always suffered. When I say I was absent a lot, I’m talking 65 days a year in my worst years. It was hardly ideal, I know, and it’s hard for me to even admit. I don’t talk about any of this much for that reason.

My grades were awful in science and math, but even history was a struggle for me in these days (and I had such trouble getting the notes and homework for so long). I failed Earth Science so bad, they told me not to even bother taking the Regents. Regents, for those that don’t live in New York, are the standardized testing for the core subjects. The questions were written in a way that were really hard to understand, especially for someone with undiagnosed concentration issues, and I always struggled with them.

In 10th grade, I failed both Biology (because I wasn’t there enough, and not being there to participate in labs didn’t help) and Global History II. The way Global History worked was in 9th grade you’d take Global History I, and in 10th grade you’d take Global History II. The regents was in 10th grade, and it was accumulative, based on the past 2 years. 

My grades for 10th grade Global History were not great, as I was having trouble retaining the information. My teacher made a deal with me– as long as I passed the regents, he promised he’d get me through the year with a passing grade. I worked my little butt off, memorizing as much as I could with flashcards. I took the regents and got a grade in the 80s. I was so proud of myself, because that grade was not easy to come by for me. My best subjects were always English and art, I always had trouble remembering important dates for history. Keep in mind, I had undiagnosed ADHD all throughout school, so the struggle was real.

I got my end of the year report card and my stomach sank. He failed me. He freaking failed me! He gave me a 64 for the year!!!!! A 64!!!! That’s only 1 point away from a passing grade!!! ARE YOU KIDDING ME?! I went up to him and asked him about it, and he told me he “just couldn’t make the numbers work”. I was beyond mad, I was livid. My beef with teachers was reinforced.

That meant in 11th grade, I had to take Global History II all over again, and on top of that, I had to take junior year’s history class, which was U.S. history. I also had to retake Biology. 11th grade was probably my hardest year yet (without having to retake those 2 classes). It has the most regents, the SATs, and it’s when college starts entering the equation. It was also in 2001.

I was sitting in English on September 11, 2001, and the teacher was reading a story aloud– one that involved walking from a path and finding a city. When she finished, she told us to draw the imagery we heard in the story. I drew two buildings side-by-side, and showed it to my friend, asking her if they looked like buildings. She said they looked like ladders because of the windows, and I agreed. I looked up at the clock to see how much time I had left. I distinctly remember looking at the clock that day. It was 8:45 AM, meaning the class would end in a few minutes. I looked down at my paper, picked up my eraser, and erased the two identical buildings I had just drawn.

Two periods later, I walked into Advertising Art. One of my friend’s came in out of breath, saying two planes had flown into the Twin Towers. I gasped and said “OMG! The World Trade Center!” She tried to correct me. “Not the World Trade Center, the Twin Towers!” I explained to her they were the same thing. I know it worried her, because her dad worked across the street. The town on Long Island where we live is less than an hour from the city, so a lot of people from our town work in the city. School was madness that day, and the teachers were denying anything was happening in all the classes.

They wouldn’t let us watch TV in the cafeteria, which we usually did. That’s when we knew something major was up. I know they didn’t want to make us panic, because some parents of students worked in the Twin Towers, but we should have been told what was going on. It wasn’t until one of my last periods that my Participation in Government teacher told us it was all true. By that time, half of kids in the school had left early, and the classrooms were eerily empty.

In 2001, not many people had cell phones yet. I still didn’t have one, and those who did didn’t have any service. I remember standing on line to use the pay phone to call home, because I knew my dad sometimes worked in the city.

I called home and my mom told me he was actually on his way home from the city. He had an appointment in the North Tower at 8:45 AM, but something told him he should stop by his office first to pick up a sample, which was something he rarely, if ever, did. That decision saved his life.

He was running late for the appointment and on the subway when the first tower (the North Tower) was hit by the first plane. My mom got ahold of him right after it was hit, and told him to get home. He didn’t believe it was as bad as she was making out, so he said he was still going to go to the appointment. As she was on the phone with him, the 2nd tower was hit. That’s when he realized, and made his way home. I am so thankful for that split moment decision he made to grab samples before his appointment.

The shock and trauma of being alive and witnessing what was happening during 9/11 was a lot for anybody, but New Yorkers (and parts of New Jersey and Connecticut) in particular. It definitely worsened my already aggressive anxiety.

Two weeks after 9/11 was my Sweet 16. I had the best night of my life, and felt truly beautiful for the first time ever. The day after was rough for me, though. My mom always says that the day after a big event, I’d get really depressed, and that’s exactly what happened. I felt like nothing like that would never happen again, and it made me extremely sad.

While in 11th grade, I started going to acting classes with a friend. Her and I had met in an acting camp a few years before and we instantly became close friends. I’d always wanted to be an actress, especially after I learned that my great grandfather was an actor and had his own Vaudeville show. I couldn’t sing or dance, so as much as I loved going to the theater, being in musicals and plays wasn’t really my thing. My dream was to be the next Lucille Ball, and at that age, I thought it was still possible. I never wanted the fame, but I wanted to make people laugh, and work enough to be successful in the industry.

Making people laugh is a trait you pick up quick when you’re bullied a lot, especially for your looks. It’s like you’re trying to overcompensate, and show your worth the only way you can figure out how, and that’s with a sense of humor. I was always the friend my other friends would come to for a laugh, and I liked being that person. 

The final post, part 3, is now up!