This journey is about my experience living with OCD. OCD is commonly associated with some form of rigid thinking and germ-related phobias. In fact, OCD is a disease characterized by extreme worry, doubt, and fear. A person with OCD has an extremely difficult time tolerating uncertainty. It is an extremely painful condition that left untreated, can destroy the lives of those living with it, and the people around them who love them. It is commonly misdiagnosed and mistreated by mental health professionals, with deadly consequences. A person with OCD is ten times more likely to die by suicide than the general population.
While OCD is a chronic, lifelong condition, it is treatable and manageable. I share my story of living with OCD with the goal of increasing awareness about this disease.
It is my hope that reading this journey will give the non-OCD person a peek at what is going on inside the head of an OCD sufferer from day to day. Have compassion for him or her. To mental health professionals not specially trained in treating OCD, please reach out to the International OCD Foundation for training so you are not inadvertently making life more difficult for the OCD sufferer. To the OCD sufferer, you’re not alone. This is a very difficult thing to live with, but it can be done. When we learn to simply let the worries, doubts, and fears happen without acting on them, and instead move toward the life we really care about, we can reclaim our lives.
Looking back, it seems like I have always had some form of OCD. I’m fifty-two years old now. I started suffering in a serious and painful way when I was fifteen years old, but even before then, it was clear that something was different about me. I remember as a little boy, I would not drink out of certain glasses in my house, because of the fear that they may have had some kind of germs in them. I wouldn’t go on rides in amusement parks. I couldn’t sleep over as all my friends did. Everything seemed to be “scary”. I also had these behaviors I had to do until it felt, “just right” or something bad would happen. Touching doorknobs, not stepping on the cracks in the cement as I walked through the Brooklyn streets, saying certain prayers over and over in my head, blinking, and swallowing. All of this went on in my head where nobody could see it.
Fearing the unknown
Around thirteen or so, I started getting thoughts about death and being alone that terrified me. I also had this thought at night, what if I die in the middle of the night, and they go to bury me, but I wake up under the ground? I was terrified about falling asleep. Most OCD thoughts start with, what if…? You can fill in the blank with anything that a person might care about. What if my wife is not the right person for me (relationship OCD)? What if I kill myself (suicidal OCD)? My mother had that one. What if I jump into the middle of the train tracks while I’m pregnant? My mother had that one too. (Harm OCD). What if I’m really a child molester? What if I lose my job? What if, he, she, it, or they, don’t like me? I think you get the point. Unlike most people, the OCD sufferer can’t rationalize these thoughts away. We know that we probably didn’t molest a child, but we can’t stop worrying, doubting, and struggling with the idea, and the very intense and painful feelings that accompany it.
At fifteen years old, my friends and I smoked some pot. After about ten minutes, I got an all-alone feeling which was totally terrifying. I just wanted it to stop and was extra terrified, but I knew that the drugs were in me, so no one could do anything about it. I started getting intense panic attacks at night, causing me to run home to be with my mother, who had also been my safety net. My mother sent me to a therapist who told me that for some people who are prone to anxiety, marijuana can bring it out of them. The panic attacks continued.
One evening, my friends and I were eating in a diner, when somebody mentioned, as a joke, how my buddy’s hamburger might be poisoned because he was dating the owner’s daughter, and I thought, what if I got his (my friend’s cheeseburger) with the poison in it? I knew that the chances that the owner of the restaurant put poison in his food, were close to none, but still, I became terrified. I couldn’t breathe and felt that everybody was floating in a dream. I ran home to my mother but she was not home. I went to the bathroom and threw up. I was flooded with terror and anxiety. Finally, my mother came home and I calmed down. I fell asleep. When I woke up in the morning, I thought, “Hmm, I feel better.” But then I was hit with another thought, why does being around my mother make me feel better? It’s all in my head. She’s not in my body or anything, where she can really do something about the panic? I was flooded with a level of terror that even I, never felt before. Oh my God, I thought, I’m totally alone inside here and nobody can help me. I was sick inside. I didn’t go to school for a couple of days. I tried to describe what I was experiencing to people, but really it was impossible for anyone to really understand. How could they? People said, “it will go away”, but the explosive fear and trembling in my body told me otherwise.
My mother sent me to a therapist who said it was just a nonsense thought, it will be gone by December. I believe it was October at the time. He was the first of many therapists who were wrong. In fact, the obsessions lasted for about five years. Over that time, the worry, fear, and doubt attached to different thoughts, but essentially it was the same underlying feeling. What if this never goes away, what if I’m really schizophrenic? What if I’m gay and don’t want to admit it to myself? What if the problem is that my girlfriend is not the right, person for me? What if none of this is real and I’m just imagining all this? What if I have to ultimately kill myself? Eventually, I would just think of the holes in my ears, and all these feelings would come flooding in. It’s the same to this day.
One day in college, my friend made a joke about people at parties being dosed with LSD during the hippie era. This led to a whole thing where I was terrified of being, “dosed”, about parties, in bars, in dorm rooms, and eventually anywhere where there were open cups.
Finally some relief
At around twenty years, around 1990, I went to the psychiatrist at my college, who said, “I’m going to prescribe you a new medication called Prozac.” I came back to him after taking the Prozac for a few weeks, and he said, “How are the thoughts?” And I remember going, “Oh, they haven’t really been bothering me.” He said to me, “you’ll never have to deal with those thoughts again.” I couldn’t believe it. I was free. The Prozac worked stronger, and I felt relief for the first time in five years. I was able to enjoy my life like everybody else. The thoughts and feelings would come back from time to time, but they were less intense and also seemed to leave quicker. I thought I was done with OCD, once and for all, but unfortunately, this was not the case.
OCD has a sneaky way of worming its way back into one’s life. The most vulnerable time is when I would think, hey, my life is great. Then boom, there it was. This is because OCD attacks things that we care about most. It is during those times when there is most resistance to the thoughts and feelings, and OCD thrives on resistance.
About six years later, I was married and working as a high school teacher in NYC. My life was great. The meds were working. I was married with a great job that I worked hard to get. I remember being in the classroom where I taught high school history thinking, my life can’t really get any better than this. And then, of course, boom. What if the students don’t respect me? I went on a website where the students rated their teachers and read one that was a not-so-complementary review about me. I flipped out. It consumed me. I couldn’t get it out of my head. I became terrified of going into the classroom. Being in the classroom was like being tortured. I was seeing a therapist who tried to get me to work through my feelings. The therapist attempted to analyze why I may have been concerned about judgment. It became worse and worse.
Maybe if I had gotten ERP
If I just had a therapist who said, this is OCD, maybe that would have helped. There is a part of your brain that’s broken. You can not analyze or reason your way out. Just let it happen, but don’t do what it wants you to do, who knows, I may have not lost everything I cared about. But these were the days before OCD was such a known thing. I just wanted to run. Fear and dread filled my days and nights. I told myself that maybe this was not the right job for me. I thought that was the problem. I remember calling my wife every morning saying that I couldn’t bear to go to the class. She didn’t understand what was going on and would get frustrated with me. “You’re being irresponsible”, she would say. For about a year, she struggled to get me to go in. Finally, one day, in the midst of panic and despair, I quit. I came home, and for a moment had some relief.
But then the anxiety just got stronger. I didn’t know where to turn. I just wanted the feelings to stop. She said that she needed to be by her family, so we packed up and moved to Michigan. I didn’t care where I was at the time, really. I just wanted to close my eyes and never wake up. Suddenly, I was in a town in Michigan. I couldn’t get out of bed in the morning. I would wake up and just lay there, frozen in immobility from about 7 am to 11 am. I remember being awake, but literally not being able to move my body. Finally, a year or so passed and I was not getting better. Every day I would talk about killing myself. I would go to sleep hoping I wouldn’t wake up somehow. While it’s easy to describe the thoughts and worries we have, it’s impossible for people with OCD to really convey the pain that we are in. You just want relief. Finally, my wife at the time, suggested that maybe we should split up. I moved out. I was alone, somewhere in Michigan. I had no family, no friends, and no job. I was terrified of working, lest I get the thoughts.
At that point, the OCD succeeded in destroying my marriage, and my job. What did I have left? Just the OCD monster itself, crippling me. One day I was alone in my apartment, begging God for some relief when I suddenly realized that there was nothing out there that was going to save me from this thing. I had a simple and clear choice before me. Kill myself, or live with it.
I remember thinking, as horrible as this thing is, I still wanted to live. And I thought to myself, somehow, if I’m choosing to live with OCD, I’m going to have to figure a way to live with it.
This was a huge moment for me because it was the beginning of facing it head-on. It was a movement away from, this thing has to stop, towards, ok, how can I take the OCD monster with me for a ride as I still live my life? This was the beginning of my accepting this condition. Paradoxically, I felt some relief at this point. I saw for the first time that the difficult feelings and thoughts associated with OCD were not necessarily the problem, but the resistance to them was. When I say to myself, this thing has to go away, or I hope I don’t feel it, I’m dead in the water. But, when I say to myself, whatever happens with OCD, I’m going to try and spend time with my kids, or work or whatever, then I am better. Sometimes the OCD monster is there with me as I engage in these behaviors, and sometimes he steps off the bus. His choice.
At this point, I went to someplace named Michigan Rehabilitation, which is a state program to help people with disabilities get employment. They got me a job doing direct care for developmentally disabled people. It was the perfect job for me at the time. Something about helping other people who were born with these types of difficulties is just healing. I was able to use some of the sufferings that I experienced to help others, mostly by just having love and compassion for them.
Learning to allow the discomfort
It was around this time that I met Dr. D. I had seen, let’s say ten therapists at that point in my life, and not a single one understood what I was going through. Some talked about my childhood, some tried to get me to analyze my thoughts, to understand why I wouldn’t want to be alone or would be worried that I’m gay. Some really had no answer and were just making shit up. You basically can tell the minute they open their mouth. But Dr. D., the moment I sat down in her office, said, “Don’t tell anybody this, but I have OCD too.” And I knew, immediately, that she did. She got it. It was an unbelievable thing for me. She told me, “go to work and do whatever you have to do, and whatever OCD thoughts that you get during the day, tell them that you will deal with them at night, and refocus on what you’re doing.” At night, she instructed me to free journal all of my OCD thoughts for 15 minutes, and then stop and put the journal away. My journal would look something like this, what if I can’t handle this and kill myself, what if I get the thought or feeling at work, what if I lose my job, what if I get the ears thought, what if I’m a narcissist, what if it never goes away, what’s the point of doing all this when I’m going to die anyway? This was actually helpful. It helped me get through the day and sometimes, the OCD monster, or BOB as I started calling him, would leave to get lunch or something.
One day I was in Barnes and Noble and saw this book, The Acceptance and Commitment Workbook for OCD. This book gave me hope because it was clear that the authors really understood the illness. They talked about OCD as one of those Chinese finger traps, where you put both fingers on each side, and the more you struggle to get your fingers out, the more stuck you became. Ahh, this made sense to me and my experience. The answer is to not fight, but allow it to happen, which is essentially what I was doing with Dr. D. and the journaling assignment. The other part of this is to identify one’s values, the things that are most important in life, and move towards achieving those values, despite the OCD. Hence, acceptance and commitment, or ACT. This has helped me tremendously.
Eventually, I remarried and started working in education once again. Somehow, I clawed my way back and rebuilt my life. I lived with OCD. It hasn’t always been easy. Sometimes, it’s like it’s not there. And other times, I spend the day just trying to get through it, to the moment when I can sit in a room and watch my breath, and get some relief.
But, every day, I commit myself to being a good father, a good husband, and a good teacher as best I can with this thing.
I have noticed a couple of other observations on how OCD affects me and others that may not be so obvious. Chronic indecisiveness: OCD is a disorder of the doubting areas of the brain, so making decisions can be very anxiety-provoking. Reassurance seeking: Again, it’s about doubt. So, sometimes, I’ll repeat something somebody has said to me, seeking reassurance, and they’ll get mad thinking that I haven’t been listening to them. Difficulty planning ahead: Planning involves making choices. Difficulty starting or completing tasks because things are, not right. All these things affect people with OCD’s lives and relationships in ways that are often not so obvious.
Now, I’m going through a divorce for the second time, and my life, or part of my life is falling apart once again. The OCD worries, fears, and doubts are strong. What if I have to kill myself, What if I get these feelings at work and have to run again, what if I can’t have another relationship because of the OCD, death, death, death, the thoughts can be persistent. I’m obviously going through a time of tremendous uncertainty, so I should probably expect Bob to show up. He sees an opening. I remind myself to say to the OCD, “Hi Bob. Yeah, how are you doing old friend? I make a mental note of him and then I have to go to work now or play with my kids. I think I’ll talk to you later, Bob.
OCD will be part of my life until my last breath. It’s a hard thing to live with, and it’s not fun. But, I do have the ability to not let it destroy my life, and have a proven track record to show for it.
I wish there were better medications and better treatment options, but at least a field dedicated to its treatment now exists. It’s important for me, when I get down about it, to recognize what I have been working with. For somebody living with this thing, I’m doing pretty well. I have a career and children, and even my soon-to-be ex-wife is someone I care about deeply and she cares for me. This is a HARD thing. For anybody out there working with this, you’re not alone. You can’t necessarily stop it. But, you can learn to navigate it, mostly by just letting it happen while you move towards the life you care about. And even then, there will be setbacks. Finding a therapist who is specially trained in treating OCD, and who uses Exposure and Response Prevention (ERP) is crucial. If you have OCD and your therapist doesn’t use this for treatment, please go to NOCD or the IOCDF to find somebody who does.