My Story: My Battle with Obsessive Compulsive Disorder
This is an excerpt from The Terrorist Within: Overcoming Obsessive Compulsive Disorder. It is a story of one of the worst cases of OCD I ever encountered -- my own. While this story gives the reader a taste of what having OCD is like, it is by no means an exhaustive list of all possible OCD symptoms, nor does it detail even a small fraction of all the symptoms of OCD I personally had.
The Terrorist Within: My Battle with OCD
It was still dark outside when I woke up and tiptoed past my parent's bedroom in Schenectady, New York. I wished I could go back to sleep, perhaps forever. For most people working the typical 9-to-5 job, there was plenty of time to go back to sleep and still get up in time to get ready for work. But in my case, I could not just hit the “snooze” button. I had way too much to do before I was ready to leave.
I walked into the bathroom and began a process that would often end hours later. I stepped into the shower and turned on all the faucets, hoping I had gotten the water temperature right with just one try, because I could only touch the faucets once. I washed the soap bar off, which entailed actually soaping up and rinsing the bar of soap itself. This stung my raw, chapped (and sometimes even bleeding) hands, but this was a fairly good day: this particular action was only necessary twice.
These bizarre actions, which I had come to call “rituals”, had been a part of my life for a very long time. I had been doing them since I was a very young child, and over the years they had gotten much worse -- to the point where they now consumed almost every waking moment. Sometimes I had no idea why I had to do these increasingly complex and often bizarre actions, just that I did. At other times, I would feel that a specific horrible event, like someone dying, would occur if I did not perform the rituals, no matter how senseless they seemed.
To the outside world I was a normal, intelligent, even happy-go-lucky young woman -- but little did anyone know the battles that raged inside my head. I knew these thoughts and actions were not normal and feared I was either crazy or getting there fast. Yet I did not dare tell anyone for fear that I would indeed be labeled “crazy” and locked up in a padded cell somewhere. Every day I fought with every ounce of strength I had to stop the thoughts and rituals, but eventually they became so overwhelming that they took over my life.
Whenever I tried to resist the urge to perform one of these actions, my anxiety level would instantly rise to unbearable levels and stay there -- for days, weeks, sometimes (no kidding) even for years. Performing a ritual sometimes made the awful anxiety go away, but never for long. Soon another cycle of frightening thoughts and bizarre, never-ending rituals would begin.
So here I was, trapped, starting and ending each and every day of my life with thoughts and actions that sapped my energy, destroyed my peace of mind, and dictated my every move. The shower routine was just the first of thousands that occurred throughout the day.
I started at the top of my head and washed my hair. So far, so good. I washed the bar of soap yet again and then scrubbed my hands ten more times. Now for my right arm and shoulder and -- oh, no! My elbow touched a faucet. I had to start all over again. I started washing all over from the top, washing my hair a second time, but my wrist brushed the shower head this time, so I had to start over for a third time. By now the water was scalding but I could not touch the faucets again until I washed fifteen specific body areas three times in four different ways, all very methodically done with no variations in the process allowed. If I didn't perform these actions perfectly, dictated by some unknown drive inside of me, I would feel as if something unspeakably terrible would happen. The feeling of doubt and dread that drove the thoughts was so strong it was literally sickening.
At last I was done. Outside the bathroom window, the sky had gotten light. I had been in the shower for over two hours.
I hurried to get dressed. I still had to a lot to do before I could leave for work. I looked in the closet to see if my dress was ''right'' to wear. If I felt for some unfathomable reason that it was not “right'' then I could not wear it without suffering unbearable anxiety. Sometimes I went through my entire closet before I could feel ''right'' about wearing a particular outfit.
An hour later, three hours after getting up, I was almost ready to leave the house. Now came the really hard part. I had to check the stove to make sure it was off. I stared at the knobs on the stove, knowing full well that they were in the “off” position, but what if I was wrong? Maybe they just looked off. ''I'll just feel the burners to make sure'', I thought, desperately trying to outmaneuver the doubt. I didn't feel any heat, but even that didn't work -- what if my sense of touch was not working right? It was the same overwhelming sense of doubt I always felt. Nothing I did ''clicked'' in my head to end the awful sense of not being sure or done. I felt as if something terrible would happen if I did not get it ''just right''. And it was never ''just right''. By the time 10 minutes had gone by, sweat was pouring down my face. Don't start washing, you'll be here all day, I told myself.
That was 1973. For me and an estimated six million other American sufferers of a neurological condition known as Obsessive Compulsive Disorder or OCD, help was many years away. In fact, for most of my life I did not even know that there was a name for these strange symptoms; it was not until I read a description of OCD in a textbook for a college course I was taking that I realized that this is what I had. The fact that both the textbook and the course were called “Abnormal Psychology” was not lost on me, and only served to deepen my sense of horror at being “mentally ill”.
OCD has been named ''The Doubting Disease'' for good reason. Most people can relate to a feeling of uncertainty or doubt that they left the stove or the iron on, or that they didn't lock the house or the car. And everyone occasionally has fearful thoughts of horrible or catastrophic scenarios. When you have OCD, this scenario can occur many times a day, only when it does, your brain gets “stuck”. You are not able to dismiss these frightening thoughts and the strong accompanying feeling of doubt that comes with them. In addition, you may have an urge to “make sure” that the thoughts are not valid or true by performing certain repetitve actions. These actions are known as “rituals” or “compulsions”.
Compulsions usually involve the performance of esentially useless tasks that feel very necessary to the OCD sufferer. They serve to lessen the awful feeling of almost unbearable anxiety that is a comon feature of OCD. Performing a ritual or compulsion is also a double-edged sword: despite what can be many, many repetitions of a compulsion or ritual, the OCD sufferer may never feel quite certain that they have finished the task of "making sure", no matter how many times they try. This “What if…” feeling and the anxiety it engenders can be overwhelming and debilitating. There are no words that can adequately describe it.
Some people's physical or outward rituals involve cleaning their house for hours, or checking doors, locks or stoves many times before going out. Some people hoard possessions until their homes become uninhabitable. Some people have elaborate procedures for going up and down stairs or in and out of rooms. Some people rituals become extremely complex, involving many steps and actions, none of which are the sterotypical ones of handwashing or checking.
Some people's OCD does not involve outward or observable rituals at all. Their OCD consists only of repetitious thoughts, which may or may not be accompanied by mental, rather than physical, rituals. These "mental" rituals can be things like having to repeat specific words or phrases over and over in their mind. People with this type of OCD are often labeled "pure obsessionals".
Performing a ritual, whether it is a physical or mental one, serves the purpose of ''breaking'' an obsession. And it does. But not for long. Soon the cycle repeats itself and symptoms can grow exponentially to what can be enormous and sometimes bizarre proportions. Quite often, OCD takes the form of using a sufferer's worst fear against them. This is a particularly painful form of OCD, and is the type I suffered from for most of my life.
The torment that people with severe OCD experience is brutal. It is like living with a terrorist in your head, one who knows your worst fears intimately and uses this knowledge against you. OCD takes whatever is most dear to you and holds it hostage in order to get you to listen to and obey it. It is a malignant and horrific disorder.
I developed OCD when I was very young. I remember one particular day quite clearly. I was about between about five years old and standing in the parking lot of Our Lady of Fatima Church in Schenectady, New York. I was thinking about the catechism class I had just left, the one that talked about hell. While I was thinking about it, I felt a bolt of terror go right through me because the class had scared me so much. That night I started straightening out the rugs on the floor of my room and asking permission for everything. I thought that if I did not do these things, I might go to hell. That one stressful episode triggered a 30-year struggle with this hideously painful disorder, one that did not disappear even when I overcame the fear that started it. I do not remember having any kind of OCD symptoms prior to this episode, in fact as I recall I was a pretty happy child before the OCD started.
I have observed that OCD is most often triggered by one of two things: stress and hormones. When asked “When did your OCD first begin?” the vast majority of the thousands of people with OCD I have worked with over the years say that their OCD started either after a stressful period or around the age of 12, sometimes both. This is such a common response that I feel there must be a connection between hormones and/or stress and the onset of OCD. For women, pregnancy (which obviously involves changing hormone levels) also seems to affect the course of the illness dramatically. If my stressful event had not happened at age five, some other stressful situation and/or hormonal changes might have eventually triggered the disorder. I do feel that I would have not had as severe a case if this had happened because I would have gone through fewer years of having to fight the OCD before treatment became available, and I would have been older and had more coping skills by then, but I will never know for sure.
Anyway, the “hell” obsession went on for literally years. It was the first thing I thought of in the morning and the last thing I thought of at night. My rituals consisted of things like excessive tracking of my “sins”, real or imagined, frequent questions of my parents as to whether or not something was wrong or not, and extreme guilt and scrupulosity. My parents thought I was an unusually sensitive child and tried to allay my fears as best they could. Nobody knew what OCD was back then. In a very short time I went from a generally upbeat, happy child to a very sad one. I remember wondering when I was going to feel “normal” again; and as time went on I slowly realized this problem was here to stay. I vowed to find a way to stop it, but how?
Like most OCD sufferers, I learned over the years to cover up my problem very well and act normally. For the most part no one ever even suspected I was anything but a normal, intelligent, even happy-go-lucky kid. I was very shy and did try to keep to myself as much as possible. I was afraid that if anyone really got to know the real me they would think I was crazy. I felt very alone.
It was at age 12 (hormones, remember?) that my OCD took a decided turn for the worse. I started to feel that I had to wash my hands hundreds of times a day or I would make someone sick, and they would then die and it would be my fault (scrupulosity and guilt was always a big part of my OCD, probably from the early terrifying religious instruction about hell). I started to check and recheck everything. When I wrote down a homework assignment at school, I had to have the teacher sign it because I would doubt that I had gotten all the assignments down right. Soon my OCD went from really bad to unbelievably bad. I started to feel that if I did not do a ritual exactly right, then I did not deserve to enjoy anything, even life itself. During an active OCD obsession, my whole body started to shut down in a way I can not adequately describe. I could not feel even close to OK again until I did what ''it'' told me to do, no matter how bizarre.
At age 19, after high school, I took a job with the Social Security Administration in Schenectady, New York. At one point I was promoted and sent to Buffalo, New York for training for six weeks. This meant six hours of driving one way to Buffalo and back every week. This caused a flare up of another OCD symptom I had been experiencing. It had to do with driving.
One morning I hit a bump in the road without seeing it first. I immediately thought ''What was that?” I didn't see anything. Then the thought occurred to me that maybe I had hit someone without knowing it. It was so ludicrous. I knew I hadn't hit anyone, but the doubt was suddenly overwhelming. The farther I would drive, the worse it would get. I checked the rearview mirror for flashing red lights, emergency vehicles, any sign of an accident. Finally I gave in and turned around, circling the area over and over to check. There was no sign of an accident. Relief. But wait. How could I know I was looking in the right place? Maybe the person had been thrown by the impact. Every time I checked yet another area and saw nothing, I would briefly feel relief, followed by another round of “What if” and then more checking. Sometimes this went on for hours. It often got worse just as I approached home, exhausted from driving around endlessly checking that I hadn’t hit anyone.
One night I called the police to ask if there had been a hit-and-run accident in an area I had been driving in when a OCD hit-and-run episode occurred. I aroused quite a bit of suspicion in the police officer who answered the phone. He obviously thought I was a drunk driver who had committed a hit-and-run and could not remember it. He only backed off when I told him I had a ''mental problem''. As I hung up the phone, I sank to the floor and sobbed. I was afraid that if I kept calling the police, some day there might be an actual hit-and-run in the area I was in when an obsession started, and the police would think I had done it and arrest me because I was calling and asking about it. I vowed at that moment never to call the police again for reassurance about an obsession.
The next morning I read every word of the newspaper instead, looking to see if there were any stories about a hit-and-run accident. I started listening to the radio in the car to see if there were any reported accidents. This was to become my preferred method for breaking hit-and-run obsessions. I got a lot of practice because these incidents often occurred several times in a day. Often while I was listening to the news reports on the radio to “break” a current obsession, I would hit a bump. The whole scenario would instantly repeat itself. I rarely got to work on time. Eventually, I couldn't even get in and out of the driveway in the morning. I'd have to back the car in and out 25 times before I was sure I hadn't hit anyone. It was horrible.
At one point I purposely stopped listening to the car radio totally and turned my rearview mirror up so I could not look into it, in order to avoid triggering a checking cycle. When my OCD was at it’s my worst, I could not even drive at all.
By now I was 23. I'd been suffering from OCD for over 16 years. By the time I reached the age of 30 I'd been to every doctor, therapist, counselor or priest I could find, desperately searching for relief. Some said I was ''too neat''. Some said I was secretly homicidal (you can imagine how therapeutic that statement was!). Some said I was getting some kind of ''high'' from the self-destructive behavior, like an alcoholic or a gambler. Some wanted me to scream my lungs out and hit pillows, which I gratefully did. Most had me talk endlessly about my childhood because they felt that this was the root of my problems. None of this helped even one iota to stop the symptoms. It was clear from all the counselor’s comments that I was one sick puppy. No one even so much as wondered if I had a physical illness.
Despite these ''expert'' opinions, I knew that I was in no way ''enjoying'' the obsessions or compulsions; quite the opposite. I wanted desperately to make them stop. I vowed to keep on searching until I found an answer. I learned how to ''act'' normal by concealing the rituals very well. To others I indeed seemed normal, even happy, with an excellent sense of humor. But inside the pain was horrendous. The only thing that kept me going was the thought that somehow, someday, I would find a way to get over this. But how? Most problems have a name, and perhaps some type of treatment. Not this one.
One day while driving, I couldn't take it anymore. I couldn't even kill myself because the OCD said I would go to hell. So that was out. I suppose you might say that in this perverse way my OCD saved my life, but in my opinion it wasn’t much of a life to save. I often wonder how many people over the millennia have killed themselves to escape OCD; I suspect the number is amazingly high.
I started seeing a minister and yet more counselors. The minister helped me a lot when he said God didn't want me to suffer like this. Slowly I got over the obsession about hell, but to my extreme disappointment, other obsessions took their place. Eventually they always wore me down.
Most of the mental health care providers I went to did little to help, at times making the situation worse. One of them, nodded sympathetically as I spoke. ''Oh, yes'', she said. ''I know what you have. There's a drug for people like you''. She also mentioned there was something being used in Canada, but she would not tell me the name of it because she said that Federal law would not allow her to. Years later I surmised she must have been talking about one of the early drugs for OCD (Anafranil), one that definitely would have helped me. It had been available in Canada for years. I would have gone to Canada for it. Indeed, I would have gone to Japan for it. But instead I took the one she wanted me to take: Thorazine.
The drug made me sleepy and my symptoms continued to worsen; I was now too drugged to fight them. Throughout my illness I had always managed to function. But while I was on Thorazine I could only go to work four hours a day and I spent half of those days in the bathroom, washing my hands. The other half of the day was spent at home sleeping. The hand washing was extremely embarrassing when people noticed, but I just could not stop. Whenever someone asked me why my hands were bleeding or why there was literally a white line up to my wrists, I told them I had a skin condition. I even had to give up my promotion at work and go back to my old job, something that was extremely disappointing and embarrassing to me.
I was on the drug for four full months before I gathered enough strength to research it. It wasn't for ''people like me'', it was an anti-psychotic! Apparently the counselor did not know that OCD sufferers are not psychotic, no matter how bizarre their symptoms appear to be. In fact, I, like most people with OCD, retained full insight that my symptoms were excessive, unlikely, or downright absurd. The problem was I could not access a feeling of certainty that the thoughts were false, only the overwhelming sense of doubt that they might be true. This is one reason OCD is so painful. This retention of insight is a hallmark feature of OCD, although the level of doubt sufferers experience may make it appear at times that this insight is lost. The most typical statement I hear from a person with OCD is “I know this is crazy, but”…..followed by the content of their obsessions and/or compulsions.
I realized that the medication was not helping me, and was in fact making things worse. I went off the medication and changed doctors yet again. The symptoms calmed down a little, but they didn't go away.
This ends the excerpt. _______
The story goes on to detail OCD symtoms that went on for many years, increasing in severity as time went on. Eventually I was basically at the end of my rope. I did not know how much longer I could stand the torture that is OCD. The only thing that kept me going was the hope that somehow, somewhere, I would find relief. To find out how I ultimately found that relief, helped to start an organization to bring OCD out of the closet, and information about facets of recovery that are not widely known, please go to the home page and click on the link to buy the e-book.
Ultimately I was able to completely recover from OCD. Unfortunately many other fellow sufferers are not so lucky. Even after more than 20 years of helping people with OCD, I observe that the need for information and support for OCD has not diminished much. People still tell me that their health care practitioner has little or no understanding of OCD, or that they cannot locate support and information from someone who understands firsthand what they are going through. It is clear that many of them feel much like I did two decades ago, when nothing was known about OCD. This makes me very sad, as I can not understand why OCD is not a thing of the past by now. That is why I am starting this website. But the main reason is to tell you some things I think you need to know:
You are not crazy. You are not alone. You can get help for OCD.
Disclaimer: Barbara O’Connor is not a licensed medical doctor, therapist, or medical treatment provider. The material in this e-book and website is provided for educational and informational purposes only. The information in this website and e-book is intended as an educational resource for people with Obsessive Compulsive Disorder (OCD), their families, friends, treatment providers, and anyone else interested in OCD. It is not intended to be, nor is it to be used as, a substitute for consultation and treatment with an appropriate health care provider. Please consult your physician or appropriate health care provider about the applicability of any opinions or recommendations found in this material with respect to your own symptoms or medical conditions.
Barbara O’Connor, the author of this website and e-book, shall have neither liability nor responsibility to any person or entity with respect to any loss, damage, or injury caused or alleged to be caused directly or indirectly by the information contained in this website and e-book.