PLEASE NOTE: The following blog post contains discussion of topics that may be upsetting, including suicide. Please take care of yourself as you read this article. If you are in crisis, know that help is only a call or click away at 1-800-273-8255 or suicidepreventionlifeline.org.
Chapter 1: “Smells like fear”
March 4th, 2020
It was unusually warm for March, but I still shivered a bit on my walk from the car to the building. I went up the familiar walkway and looked around the courtyard. I had never noticed the white trim on the building across the courtyard before. The last time I had been there, I had much more pressing things on my mind than how the hospital looked from the outside.
A lot of things had changed since I was there last. “Tim,” whom I was there to see, had told me proudly over the phone that he had been promoted. He even had his own office now. Tim was my favorite therapist at the OCD program at Bradley Hospital over four years ago. At that time, I spent most of my life in this building. Almost every day for three months was spent with Tim, or one of my other many therapists tackling my OCD through exposure therapy.
My time at Bradley saved my life. The first thing I noticed when I entered the building that day was the smell. It was sterile and static. There had always been something in that smell that I couldn’t quite put my finger on. I went up to the front desk and asked for Tim. The receptionist had me wait in the lobby. A few moments later, Tim emerged from the hallway and spotted me. “Hey kid, how are you?”
He led me down the hall to his new office and we sat down. He asked me what it was like to be back in this building after so many years. I mentioned how the particular smell of the building was what I noticed first. He laughed and said, “Yeah it smells like fear.” I had to agree with him that it did in fact smell like fear. I didn’t know fear had a smell.
Tim and I talked for hours about how things were going with me and how the program had changed since I had been there. I told him that I was living in an apartment with my friends in Boston and was about to graduate college. I told him I had a job at a cute little toy store near my apartment. I told him that I was happy. He smiled at me and shook his head. He said, “The person I knew back then would never be able to do any of those things. Look how far you’ve come.”
He was right. Just four years ago, my life was entirely different. I never imagined that I could be where I am now. Tim says that’s what he likes so much about working with kids with OCD. He says that OCD takes so many things from people and he feels so lucky to be able to help kids take back their lives. He loves his job because he helps kids live the life they were always meant to before OCD took that away.
He told me that people with OCD often think that it is a part of them. They think that their OCD is simply who they are and they can’t change it. He said that in reality, OCD actually keeps people from being who they truly are. It has taken me a long time to realize that I am not a product of my OCD. I am my own person. There is so much more to me than my illness. After struggling with OCD throughout my entire life, this was a hard conclusion to come to. What made it even harder was that I wasn’t able to get a diagnosis until I was a teenager.
OCD can take over a person’s life. It took over my life from the time I was a little kid until I was a senior in high school. It affected my relationships with family and friends. It completely altered the relationship I have with myself. It has changed the way I see myself, even today. As I tell my story, it is important to note that my situation was not unique. I am just one of many who have suffered from OCD in silence.
I share my experiences in hopes of opening up a conversation. OCD is a greatly misunderstood illness. There are countless misconceptions and wrong ideas about what it is like to have OCD. I believe that the only way to combat the misconceptions is education. The more we are able to have an open dialogue about this illness, the more people will understand about it.
Looking back and reevaluating my life from this perspective has not been easy. I still feel a lot of guilt for the way I acted as a kid. At times, OCD had such a hold on me that I acted out in ways that I regretted soon after. I thought I was a bad person and that I could never change or be better.
I set out to explore how OCD affects relationships, using my own life as an example. I spoke with my dad about how OCD has affected both of our lives. Writing this account of my life through this lens has given me a new perspective on myself and on OCD in general. It has made me see the resilience in myself. It has helped me understand the monster that I was contending with, though I still have so much to learn. I hope that my story can provide a glimpse into what living with this disorder is like.
Chapter 2: Growing up obsessive
I cannot remember a time in my life where I wasn’t experiencing symptoms of OCD. Years before I had any sort of name for it, OCD was already a huge part of my life.
One of my earliest memories is tainted with OCD symptoms. The memory takes place in the house my family lived in until I was seven. It was a small, one-story house with a finished basement. Some kids might be scared of the basement. It was cold and a little dark. But surprisingly enough, I felt safest when I was in the basement.
My biggest fear at the time was the top floor caving in while I was on it. Particularly, that the motion of falling would make me vomit.
Thinking back, that logic is nonsensical. Why would I want to be in the basement when the house collapsed? The truth is that the idea of vomiting was worse than whatever certain death came with the whole house caving in on me. I felt the same way about the school bus. The emergency exits on the bus ceiling were a daily reminder that buses don’t always stay upright. Buses sometimes get in accidents and sometimes they flip onto their sides. I made it a habit to skip afternoon snack time for most of elementary school so that my stomach would be empty in the unlikely event that the bus would flip over.
I worried about a lot of things growing up, but the worries mostly revolved around my intense fear of vomit. I was scared that the world would randomly turn upside down and that being upside down would make me throw up. I was afraid that if my parents drove down a hill too quickly that it would make me sick. Most of my childhood was spent worrying about vomit.
When asked to recall my childhood, my father says there is a lot that he now recognizes as OCD that he never understood at the time. The one that sticks out to him the most is my long list of bedtime rituals. These had to be done every night or I refused to go to bed. The bedtime ritual started as a simple bedtime routine of my parents singing “Twinkle Twinkle Little Star.” Over time, the routine got longer and longer. Before long, my bedtime routine consisted of me saying goodnight to my horse stuffed animal in the closet, being “flown” into bed by my dad, touching each of the teddy bears on my bed, and then my parents could sing. My favorite line of the song was “like a diamond in the sky.” I would make my parents sing that line over and over again after they finished the song because I was afraid I had missed it.
These rituals, which my dad and I now recognize as OCD, seemed like just a kid’s way of delaying going to bed. Lots of kids avoid going to sleep and my parents thought it was just that. Looking back, these things that seemed so silly were a sign of something much more serious that would affect me for the rest of my life.
My father has also suffered from OCD throughout his life. When he was growing up, he had mostly religious obsessions. He says, “I would feel like I had to pray in a certain way or my family would go to Hell.” He was able to keep it hidden from his family and never received any sort of treatment as a kid. He explained that he managed it by slowly exposing himself to what he was afraid of before he had any idea of what he was suffering from or that he was actually doing the proper treatment for OCD already, all on his own.
In a psychology class in college, my dad learned about OCD and was shocked to find out that other people also felt this way. He was able to recognize his childhood behaviors as compulsions. However, when it came to me and my obsessions, we did not make the same connection. The ways our OCD manifested were completely different for each of us.
It was clear that my dad and I had a lot in common. I take after him in a lot of ways. We are both driven and hardworking. We both tend to put other people’s needs above our own. However, the thing we have most in common is our tendency towards anxious behavior. Despite us both being generally anxious people, we weren’t able to make the connection that I had inherited his OCD because of how different it was for me than it was for him.
Tord Ivarsson and Robert Valderhaug’s research, “Symptom patterns in children and adolescents with obsessive compulsive disorder,” attempts to distinguish the different symptoms and subcategories of OCD symptoms to better understand the wide variety of ways that OCD can affect children and adolescents. The results of this study showed that there are five clusters of symptoms of OCD that most symptoms fall under. The conclusion of the study was that OCD is inherently heterogeneous in nature and no two cases will ever be identical, though most can fit into certain categories.
The heterogeneous nature of OCD is what kept me and my dad from recognizing that I was suffering from the same illness that he had as a child. My dad and I are an example of how OCD can be inherited. We are also an example of how OCD can be a result of learned behavior. I modeled a lot of my behavior as a child on the way my dad approached things. For example, growing up, my dad had an obsession with germs that he would manage by using hand sanitizer as often as he could. He introduced it to me and my sister as kids as “the magic stuff.” As I grew up, I learned the danger of germs and learned to protect myself by using “the magic stuff.”
Later on in my life, sanitizing my hands became a major compulsion of mine. This is just one example of how my father’s anxieties collided with my own through learned behavior. My parents often accommodated my OCD without even knowing that is what they were doing, as is the case with many families. When someone is suffering from OCD, it can very quickly become a major part of not only their lives, but the lives of their loved ones. OCD can start to feel like another, unwanted, member of the family.
Loving Someone with OCD; Help for You and Your Family lays out some very helpful tools for families dealing with OCD. This book is something that would have been incredibly helpful to my parents growing up had we known that OCD was the cause of everything we were dealing with. Sometimes, families may become very accomodating of their loved one’s OCD in order to get through daily life. This can be emotionally draining and time consuming for everyone involved, and ultimately leads to the OCD becoming stronger.
Loving Someone with OCD states: “Many families understand that their accommodating behaviors are not helpful, yet feelings of hopelessness and powerlessness lead them to ‘go with what they know.’ They don’t want to see their spouse or child continue to suffer. Soon OCD is ruling their lives as well. OCD becomes the center of the family’s life, and everyone starts living by OCD’s rules.”
Growing up, I had a lot of what my parents called “temper tantrums.” If something didn’t go the way I had planned I would become very angry and unable to control my behavior. My dad describes me in these moments as being “relentless.” When my parents would walk away from a fight I would follow them and keep pushing. Nothing they could do could stop me from acting out in what seemed like anger. Punishment of any kind was no deterrent. My dad says that punishments never worked on me. Whether it was being sent to my room or no dessert for a week, I didn’t care. I would keep arguing. These tantrums started at a very young age for me and continued into my teens. “The tantrums would devolve from you being mad at us to you being mad at yourself and you would switch on a dime,” my dad said.
When I realized how much damage and distress I was causing, my anger immediately would become directed at myself. At that point, I would end up physically hurting myself. I would punch myself in the leg or pull my hair. My parents seemed to think I was doing it to punish them. I was doing it to punish myself for being the bad kid that I thought I was. I would scream and stomp and wish my parents would understand that I wasn’t doing it to be difficult.
The truth is, I was frightened. I was frightened of the foods they wanted me to eat, plans changing, not being perfect, among a million other things. I began to see myself as an angry child. I see now that these temper tantrums weren’t really out of anger. I was scared and didn’t know how to express it. I thought I should know better. I thought I should be able to control my emotions the way other kids did. I see now that that tiny little girl was dealing with something much bigger than her. There was no way I could have known better.
My mother would say that I looked at her like I hated her during these fights. I didn’t hate her. I hated whatever was making me act this way. I hated OCD even though I had no name for it yet. Loving Someone with OCD states in regards to how a loved one can respond to OCD, “Accommodating supports OCD, not the person with OCD. By changing these behaviors, you are making a conscious decision to support your loved one instead of the OCD. You may actually act as if you’re scared of your family member’s OCD, when you may really be fearful of his or her reaction to the obsessions. Or perhaps you’re really trying to protect your family member from the unfounded fear.”
My family sometimes did seem scared of me and how I would react to things. As a young child, feeling like your family is afraid of you can have a big impact. I saw myself as a monster. For people outside of my family, I was a perfect angel. I never showed anyone else that horrible side of me, except my parents. My parents would always say they didn’t understand how I could be so well behaved for other adults but not for them. They would say that I was an angel in public but a devil at home. When I was with adults other than my immediate family, I felt immense pressure to be perfectly behaved. If an adult ever told me I was doing something wrong, I would absolutely fall apart. I felt much safer with my parents than I did with other adults, so I would take my frustrations out on them.
When I was in fourth grade, my parents decided that my anger was so disruptive that they were going to take me to see a therapist. I was very averse to the idea of seeing a therapist. I thought that seeing a therapist meant there was something wrong with me. I was convinced that nothing anyone could do could help me. I resented the idea that I needed to go to therapy for my problems with anger, though at the time, I couldn’t explain my resentment.
Looking back on it now, I can see where my resentment came from. A part of me always knew that my outbursts didn’t actually stem from anger, but from fear, even though I could not verbalize that at the time.
My dad describes my first therapist as “horrible” and as having “no bedside manner whatsoever.” He went on to say that looking back, seeing this particular therapist was a major setback in my recovery because it made my whole family wary of therapy for several years. After a few sessions, I refused to go back to see her again, thus ending my time in therapy for over five years.
After my failed attempt at seeing a therapist, I was convinced that I could not be helped. I believed that this was just the way I was. I believed I was just an angry kid who disrupted things and I could never change. I felt like a failure of a human being.
My younger sister unfortunately was often on the receiving end of my anger. Almost exactly three years apart, we spent half of our childhood happily playing together and the other half in brutal arguments. Despite being older than her, I always felt inferior to my sister. We both danced at the dance studio my mother owned and so we were constantly compared not only by our parents but by everyone at our dance studio.
My sister had an outgoing personality that had a way of charming people immediately. I tended to be quiet until you got to know me. While my sister would be happily bouncing around dance class, I would look stone cold, trying to get every step I did perfectly. She was adorable and well liked and I was infinitely jealous of her.
The most painful thing about it all was that she was much less of a disruption at home. Of course my sister was not perfect. She had her flaws just like any other person. However, it seemed to me that her flaws were the kind that normal kids have. She would be sneaky sometimes and steal an extra cookie, something I would never dream of doing. She would get too hyper sometimes. Those were not the kind of flaws I saw in myself. Her flaws never seemed to cause my parents the same kind of pain that mine did. When she got in trouble, she would take the punishment and move on, which was something I was unable to do. I would fight back when I got in trouble. My parents would ask why I couldn’t behave the way that my sister did. I didn’t know that there was something that was keeping me from behaving the way they wanted me to.
Unfortunately for me, my sister was prone to vomiting any time she was sick. It didn’t seem to bother her at all. Once it was over she would move on with her life as if nothing had happened. I, on the other hand, would go into full panic mode whenever she would throw up. Usually I would be the one crying even though my sister was the one who was sick. This baffled my parents and probably made me seem selfish. They didn’t understand how intense my fear really was.
When I would fight with my parents, my sister would hide in her room and cry. It must have been frightening to see her older sister act that way. Sometimes, in an attempt to make me stop fighting, my parents would say, “look what you’re doing to her.” I could see what I was doing to her. I could see how much distress she was in while my parents and I were yelling back and forth. It made me sad to see her that way. I didn’t want to share my pain with anyone. I wanted to keep it inside me. Somehow it would always leak out onto the people I loved. I wanted to stop hurting everyone around me but I never could stop myself from acting out.
Another side of my OCD as a child was fears surrounding death. I often forget about this part of my OCD because it isn’t one that ever comes up for me anymore. This side of my OCD was gone before we even had a name for it. My death OCD revolved around a fear of actual dead bodies and the concept of death, rather than on me dying.
Dead things in general have always scared me. When I was young, I almost stepped on a dead mouse. When I saw it, I ran as fast as I could in the other direction. One of my biggest fears was seeing a dead human body. I hated passing by funeral homes because I knew that it was likely that there was a dead body inside. If I was walking by a funeral home, I would have to walk on the other side of the street. I would sit in class some days and worry that someone in my class would randomly drop dead and I would be in the same room as the dead body unexpectedly. I felt a lot of guilt that I was worried about being in the room with a dead body more than I was worried about the implications of someone in my fourth-grade class suddenly dropping dead. I knew it wasn’t logical, but that didn’t stop me from worrying about it.
I am not sure what exactly it was about dead bodies that scared me so much. I think it had something to do with being afraid to disrespect them and them coming back to haunt me in some way. If I was in a car and we passed a memorial of someone who had died, I would have to whisper to them that I was sorry. My school bus would pass a huge graveyard every morning and every morning I would have to watch it as we passed in order to pay respect to the people inside. I didn’t grow up in a very religious family but I would occasionally go to church with my Nana. I knew that funerals were held at churches and that’s all I could think about whenever we were there.
I felt the same way about objects that I knew were old. The old books that my Nana kept on a bookshelf in the room I stayed in when I slept over were frightening to me. I would lie awake at night and stare at them, knowing the people who wrote them were most likely all dead. I would worry that if I didn’t give the books the proper respect that some spirit would end up being mad at me and would haunt me in the night while I was sleeping. There was a dated piece of artwork in my Nana’s dining room that was passed down from my great great grandmother. I hated being alone in the room with it. I would always silently tell it I was sorry she was dead every time I was near it.
This side of my OCD didn’t affect my life nearly as much as other aspects, so I often forget about it. These fears also went away without treatment because of an exposure that took place before I even had any idea what an exposure was or even that I had OCD. During my freshman year of high school, my friend’s father shot himself in their front yard. Even though I had never met him, this news came as a huge shock. This was the closest I had come with confronting the idea of death. She was a good friend of mine from my dance team and I wanted to be there for her as much as I could in this difficult time. I made sure she was okay and always had a ride home from dance. My mom and I would drive her home sometimes. When we were parked outside her house, all I could focus on was the fact that someone had died in her front yard. I worried that I was disrespecting him in some way.
The first time I slept over at her house after it happened, I wasn’t able to sleep the entire night. I couldn’t stop thinking about how I was sleeping in a dead person’s house. I felt guilt that she and I had had a good night where we laughed and talked, all in the same place where he had died. My dance team decided to go to the wake together. Before this I had never even been able to walk anywhere near a funeral home and now I was faced with having to go inside one. I rode to the wake with my mom and a few other ladies from my dance studio. I spent the whole car ride shaking. One of my biggest fears was about to come true. I was going to be in the same room as a dead body. Through the cloud of my anxiety, I could hear the ladies talking in the front seat. They said that he was selfish for killing himself when he had three kids. They shook their heads in disapproval.
I sat in the backseat frozen with fear. Not only was I about to see a dead human body, but the man who it belonged to was being talked about badly right in front of me. I was terrified that this was disrespectful and that he would somehow come to haunt me for it. I made my way through the receiving line, with tears streaming down my face. People must have assumed they were tears of grief for my friend, but they were tears of fear. I felt guilt that I was crying at this man’s wake because I was scared and not because I was sad about his death. When I reached the body, I could barely look at him. He looked nothing like the pictures that were hung everywhere. His face was taut and he looked like he was made of wax. He barely looked human. I whispered to him that I was sorry for everything.
While going to the wake was incredibly scary for me, it actually acted as an exposure to my fears. After seeing the body and nothing bad happened, I was slowly able to let go of that fear. As I got further and further away from it, the idea of death and dead bodies didn’t scare me so much anymore. Though my fears surrounding death haven’t completely gone away. Even now, I still whisper an apology to memorials as I pass by.