- Are you tormented by painful and persistent intrusive thoughts that usually revolve around your worst fears? Are you unable to dismiss these thoughts no matter how hard you try? Do these thoughts take up a lot of your time?
- Do you feel a strong urge to perform certain actions repeatedly to reduce your anxiety? Do these actions take up a lot of your time? Are you unable to feel “done” no matter how many times you perform these actions?
- Do you feel an overwhelming sense of doubt about these thoughts or actions? Are you unsure if the thoughts are true or if the repetitive actions are complete?
If any of these descriptions sound familiar, you may have Obsessive Compulsive Disorder, or OCD. OCD affects approximately 1 in 50 people worldwide, and double that number will have at least one episode of OCD in their lifetimes. That amounts to between 7 and 14 million people in the USA alone! If you are one of these people, please take heart. I want to tell you something you need to know:
You are not crazy.
You are not alone.
You can get relief.
No one can truly understand OCD unless he or she has it. Anyone can talk about how painful OCD is, but until you personally feel that pain, you can’t begin to know what it feels like.
Hello, my name is Barbara O’Connor and I know what severe OCD is like because I suffered from this most tormenting of disorders for over 25 years. And yes, I can say “suffered” because I have now been virtually OCD-free for over two decades. During that time I have had the extreme pleasure of helping thousands of fellow sufferers do the same. I am writing this blog so that I can help you, too.
In the posts that follow, I will detail how I personally overcame a 25-year case of severe OCD, became a founding Board member for the now-internationally known OCD Foundation, Inc., and spent over 20 plus years helping fellow sufferers combat their OCD.
If you want further information beyond what is in this blog, please visit this website address: ocdhelpnow.com.
The torment people with severe OCD experience is brutal; there are no words that can adequately describe this torture. It is like living with a terrorist in your head, one who knows your worst fears intimately and uses this knowledge against you. In its most severe form, OCD takes whatever you hold most dear and holds it hostage in order to get you to listen to it.
Over the millennia, millions upon millions of lives have likely been lost to OCD, either by the symptoms themselves or, very likely through suicide. It is a malignant and horrific disorder, and no one should have to suffer from it.
My OCD started when I was a very young child, at around the age of 5. By the time I was an adult, I was desperate for relief. I did not know how much longer I could stand the torture that is OCD, a torture I would not wish on my worst enemy. Finally, in the early 1980s I went for help to the Yale-New Haven Clinical Neuroscience Research Unit in Connecticut (USA) and joined a research study on OCD treatment.
At the time eleven other OCD sufferers and I who were participating in the study started an organization to bring OCD out of the closet. I am proud to say that we wildly succeeded. The OCD Foundation, Inc. (known as the OCF) is now an internationally-known organization. The OCF is widely viewed as one of the most comprehensive sources of information and resources available regarding OCD and its treatment.
Once I and some of the others in our group started appearing on such nationally televised shows as Oprah, Donahue, 20/20 and others, thousands of calls, letters, and e-mails started pouring in from all over the world. For three years I was the main contact person for these inquiries. At that time, virtually nothing was known about OCD, how common it was, or how to treat it. Most of the people I spoke with had nowhere to turn for information, diagnosis and treatment.
For thousands of fellow OCD sufferers, I became that place.
During those years I gained a new perspective and experience that few can claim: That of having the unique combination of both firsthand experience overcoming OCD personally and over 20 years of experience helping others do the same. At the time there were few, if any, treatment providers who had experience treating OCD because up until then, OCD had been considered a rare disorder. Back then if you were diagnosed as one of the so-called “rare” people with OCD, you were usually considered untreatable. The prevailing thinking on both counts was grievously incorrect.
After three years helping fellow OCD sufferers, I left the Foundation and started helping people on my own. I have now done this work for over 20 years, and over the years I have spoken to a very large number of people with OCD.
You need to know that I am not a doctor, therapist, psychologist, or social worker. I do not provide medical treatment, advice or counseling. What I do is provide information and education to interested parties as a consultant. What this means is that I teach people about OCD and its treatment so that they can more effectively work with their health care providers. My knowledge of this subject is based on my experience as a founding Board Director of the OCD Foundation, my own personal experience overcoming OCD, and over 20 years of experience helping fellow OCD sufferers obtain relief from OCD.
After all these years, I am still sometimes told by people with OCD that their primary care provider is not well-versed in how to diagnose or treat OCD. People still call and write asking me for the most basic information on OCD, and many of them are desperate for help. I have written this e-book and started this website so that people can have access to a low-cost, easily downloadable version of the information it has taken me over two decades to acquire on how to find help for OCD.
If you have OCD, I know what you are going through -- and trust me, I know how painful it is. The key to getting relief is to learn as much as you can about OCD and how to treat it, and with the help of your treatment provider, apply this information to yourself. The e-book located at ocdhelpnow.com will provide you with a good source of that information.
The Terrorist Within: Overcoming Obsessive Compulsive Disorder
This is a story of one of the worst cases of OCD I have 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 OCD symptoms I experienced over the years.
Chapter 1: My Story
The sky was still dark when I woke up. A familiar feeling of dread washed over me as I realized I would have to face yet another day. I wished I could go back to sleep, perhaps forever. Even though it was very early, I couldn't stay in bed. I had too much to do before I could leave for work.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 only one try, because I could only touch the faucets once. I washed the soap bar off, which entailed soaping up and rinsing the actual 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 rituals, as I had come to call them, 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 virtually every waking moment and, at times, controlled my every move. 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, might occur if I did not perform the rituals, no matter how senseless that 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 rituals, my anxiety level would instantly rise to unbearable levels and stay there -- for hours, 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 at times, dictated my every move. The shower routine was just the first of 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 once again, 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 had 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, 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 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, as I desperately tried 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. 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. Try as I might, I just could not tear myself away from my checking routine. “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 behaviors; it was not until I read a description of OCD in a textbook for a college course that I was taking that I realized what I had. The fact that the textbook and the course were both entitled “Abnormal Psychology” was not lost on me and only served to deepen my fear that something was horribly wrong with me.
OCD has been named ''The Doubting Disease'' for good reason. Most people can relate to a feeling of uncertainty or doubt that they may have 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 occurs many times a day -- however when it does, your brain gets “stuck”. You are not able to dismiss the frightening thoughts, nor can you dismiss the strong feeling of doubt that comes with them. You may try to make sure that the thoughts are not valid by performing certain actions or behaviors designed to reduce the awful anxiety. These behaviors are called “rituals” or “compulsions.” Even though these rituals are usually performed to reduce anxiety, the relief is fleeting. You never feel quite certain that you have finished the task of making sure, no matter how many times you try. This “what if…” feeling of doubt and the anxiety that accompanies it are hallmark features of OCD and they can be debilitating.
People with OCD usually have symptoms involving both obsessions and compulsions, although some people have only one or the other. Some people’s physical or outward rituals involve cleaning 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 have repetitive thoughts about gruesome or fearful scenarios that run non-stop in their heads.
After performing a physical or mental ritual (sometimes many times), the anxiety a person feels usually lessens -- but not for long. Soon the cycle repeats itself, and, with time, the rituals can and often do grow more and more complex. Symptoms can grow over time to enormous, even bizarre proportions. This is apparently what happened to Howard Hughes, one of many famous people thought to have had OCD. Unfortunately Hughes was born before there was awareness of OCD and its treatment, so even his considerable wealth could not buy him any relief. His life appears to have been destroyed by OCD, one of millions upon millions to suffer this fate.
There are no words that can adequately describe what it is like to live with severe OCD. The torment people with this disorder 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. This terrorist takes whatever you hold most dear and holds it hostage in order to get you to listen to 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 five or six 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 through me because the class had scared me so much. That night I started straightening out the rugs on the floor of my room over and over 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 25-year struggle with this extraordinary disorder, a struggle that did not end even when I overcame the fear that started it.
I have observed that OCD is most often triggered by one of two things: stress and hormones. The majority of the many people with OCD I have worked with say that their OCD started either after a stressful period or around the age of 12; often 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 5, some other stressful situation or hormonal change might have eventually triggered the disorder. I do feel that I may not have had such a severe case of OCD if it had not been triggered at such a young age because I would have had better coping skills at an older age. Maybe if I had gotten it later, and had to fight it for less time, it would never have gotten so bad. But I will never know for sure.
Anyway, the hell obsession went on for years. It was the first thing I thought of in the morning and the last thing I thought of at night. My parents thought I was an unusually sensitive child and tried to calm my many fears and anxieties as best they could. Nobody knew what OCD was at that time.
Like most OCD sufferers, over the years I learned how to cover up my problem very well and to act normally. For the most part no one ever suspected I was anything but a normal, intelligent, even happy-go-lucky kid. I was very shy and did 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 somehow make someone sick, and they would then die, and it would all be my fault. Scrupulosity and guilt were 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 written 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 normal again until I did what it told me to do, no matter how bizarre. I lived in fear of one of my “episodes” and went to elaborate lengths to avoid triggering one. Sometimes I was successful but most of the time I wasn’t. My OCD seemed to adapt to whatever I did, so that whenever I overcame one particular symptom, another one took its place.
At age 19, after high school, I took a job with the Social Security Administration in Schenectady, New York. A year later 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 a ludicrous idea. I knew I hadn't hit anyone, but the doubt was overwhelming. The farther I would drive, the stronger the idea would get. I checked the rearview mirror for flashing red lights, emergency vehicles, or any other 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. The obsession often got worse just as I approached home, exhausted from driving around endlessly.
One night I called the police to ask if there had been a hit-and-run accident. I aroused quite a bit of suspicion in the police officer who answered the phone. He probably thought I was a drunk driver who had committed a hit-and-run but couldn’t 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 the obsession started, and if I called the police they would think I had done it and arrest me because I was calling and asking about it. Sometimes I wonder if this has actually ever happened to anyone with this type of OCD symptom. Over the years I have heard many people tell me they had exactly the same type of hit-and-run OCD symptoms, down to the very last detail. It can be quite disconcerting to have someone recite word-for-word a symptom I thought I was the only person in the world to have, but it happens all the time. But back then, I was terrified that I was the only one who had this problem. I vowed never to call the police again in order to break a hit-and-run 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 hear if there were any reported accidents. This was to become my preferred method for breaking hit-and-run obsessions. I got a considerable amount of practice because the hit-and-run obsessions often occurred several times in a single day. Often while I was driving and listening to the news reports on the radio to deal with the 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 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 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 might get. 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 one iota to stop the symptoms. It was clear from all the counselor’s comments that I was one sick puppy. No one ever 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 continued to refine my “normal” act by concealing the rituals quite creatively. To others I seemed normal, even happy, with an excellent sense of humor. But inside of me 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. I started seeing a minister and still more counselors. The minister helped me when he said God didn't want me to suffer like this. Slowly I got over the obsession about hell, but to my disappointment, other obsessions took its place.
Most of the mental health care providers I went to at the time did little to help, at times making the situation even 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), a drug that definitely would have helped me, because many years later it did! Anafranil had at that time 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 for four hours a day. I spent half of those days in the bathroom washing my hands and the other half of the day at home, sleeping. The hand washing was extremely embarrassing, especially 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 very 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 is not considered a psychotic disorder, no matter how bizarre symptoms appear to be. Like most people with OCD, I retained full insight that my symptoms were excessive, unlikely, or downright absurd. The problem was that I could not access a feeling of certainty that the thoughts were false, only a powerful sense of doubt about whether or not they were true. This retention of insight is another hallmark feature of OCD, although the level of doubt some sufferers experience may make it appear that this insight is lost. The contrast between this retention of insight and the doubt is one of the many painful aspects of OCD.
I soon 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 a little, but they didn't go away. When they were extremely active, the emotional pain was hideous. At those times I was barely functioning and just went through the motions of life. I lived for the moment when I could go to sleep, because that was the only respite I got.
Finally, in 1983, my mother woke at 2 a.m. and heard something on the radio about research being done at The Yale-New Haven Clinical Neuroscience Research Center in Connecticut on a new medication for OCD. I called right away but since I had just had my second child and was still nursing him, I was told I would not be a candidate for the study at that time. I was extremely disappointed but decided that I had to find a way to get into the study because by this time, I was barely functioning.
It was ultimately more than a year before I finally got into the study, and months more before I finally got on the real medication instead of a placebo – and then more months before I started feeling significant relief from my symptoms. All this waiting was frustrating to say the least; but, at last, I had found a treatment source that was familiar with what OCD was and how to effectively treat it. I remember sitting in the office of the intake coordinator and hearing her tell me that I had a physical disorder, one that they thought they could help. “A physical disorder? You mean I’m not crazy?” I asked. She shook her head no. I broke down crying, and, for once, my tears were those of relief.
Before I was allowed into the actual treatment part of the study, I took part in something the researchers called a “serotonin challenge test,” which was part of the research into OCD that was being done at the center. Since a dysfunction of the serotonin system was thought to be involved in OCD, they were going to test this hypothesis by giving me a drug intravenously to, as they called it, “shake up” my serotonin system. They would then record my reaction, if any. If their hypothesis was correct, there should be some kind of reaction when I received the infusion. This serotonin challenge test was conducted as a double-blind crossover study, meaning neither I nor the researchers, nurses or doctors conducting the test knew when I was getting a real infusion and when I was getting a fake or placebo infusion.
Despite the double blind, there was little doubt which one was the real serotonin challenge test. The placebo serotonin challenge test had no effect at all. But during the next serotonin challenge test, which was conducted at a later date, as soon as the infusion hit my bloodstream, I felt very, very odd. Soon I was just about crawling up the wall with anxiety. I remember counting down the seconds before they stopped the infusion, even though the total time I was being infused was very short, probably under a half hour. I was told later that if I had not had OCD, I would not have had a reaction to the infusion at all! For me, this was yet more proof that the people at Yale were right. All this time I had been suffering from a physical disorder, not a mental illness.
Finally I was allowed to actually start participating in the research study being done on medications that might treat OCD. The study was a double- blind crossover study, which meant I would be taking either one of several medications being studied to treat OCD at the time, or getting a placebo (fake) medication. Neither the researchers nor I knew which one I was getting. The first time around I got a placebo, which I took for weeks with no effect. Then I finally was given the real experimental drug. The first one I received was an older trycyclic medication called clomipramine, also known as Anafranil. After that, I was tried on a newer class of drugs known as Selective Serotonin Reuptake Inhibitors, or SSRIs. Now there are other classes of drugs in addition to SSRIs, and more are in the pipeline.
By the way, clomipramine (brand name: Anafanil) had been approved in Canada for years; it was the drug whose name one of my therapists refused to divulge. Anafranil at that time was still considered experimental in the U.S. If I had been told the name of this drug, I could have and would have gone to Canada for it much sooner and avoided years of anguish. This little detail was not lost on me; I wondered how the treatment provider could have withheld such critical information from me deliberately. But at last I was taking something that was supposed to help; I had no idea if it actually would and was a bit afraid to get my hopes up in case it didn’t. I would have settled for even a modest reduction in symptoms and been grateful for it.
For weeks I had no reaction to the medication except side effects. My colleagues in the OCD support group were very supportive, telling me to “hang in there; it gets worse before it gets better”. This support from people who truly understood what I was going through was helpful beyond words. If I had not known how long it took for the medications to work and that at first I might actually feel worse, I might have given up too soon.
Eight weeks after starting the medication, my symptoms abruptly improved, literally overnight. I remember going to bed with a roaring obsession that I had killed someone in the road and when I woke up, it was gone! That had never happened spontaneously before. I knew it was the medication that had done it. This experience was further evidence that the people at Yale were right – not only was I not “mentally ill”, all this time I had been suffering from a physical neurological disorder that was causing these symptoms.
Over the next few months my treatment was fine-tuned by trying different SSRIs until we figured out which one of them worked the best for my particular chemistry with the least amount of side effects. This, I now know, is a standard procedure since everyone’s chemistry is different, and there is no sure way to know if a particular medication will work unless you try it. It can be frustrating for a person with OCD because this trial and error and fine-tuning or titrating can take a significant amount of time.
However, once we had settled on something and stayed with it, the medication worked beyond my highest expectations. Over the next year or so, my symptoms continued to improve until they disappeared almost completely. I was finally free.
An interesting aside is that the few times since then when I have had a flareup of my OCD, the process of getting back on my feet is always the same, no matter which OCD medication I might be taking. The medication needs to build up for a few weeks and then, bam, it starts working. I can tell the exact second it does. It is literally like a light switch going on. For some people, the result is more subtle, but, for me, it is literally a case of one minute I am obsessing like crazy and the next, I am fine. Apparently once the medication builds to a critical point it suddenly kicks in. It is frustrating that this takes so long to happen, but once it does, there is no mistaking it. I can set my watch to it, it is that dramatic.
While I was in the OCD research study at Yale, a group of us who were also participants in the study formed a support group. I remember that meeting another person with OCD was the single most amazing thing I had ever experienced. We would go out to dinner and joke about who was going to spend the most time in the bathroom washing, or who had to go out to check the locks on the car door again. Being able to laugh with other people who understood exactly what I was going through and who were clearly decent, kind, and intelligent people helped me to repair my battered self-esteem. After all, if these people had OCD and were OK people, then maybe so was I! I had truly thought for over 25 years that I was the only one in the world who had this problem, and that I was one very strange person. Now I knew I was not alone, and it made all the difference in the world.
Our little group decided at one point to write to the news show 20/20 and ask them to do a segment on OCD. We were thrilled when they said they wanted to feature OCD on one show. I was asked if I would go on the show and be interviewed, but at the time I could not imagine going so public with something I had taken great pains to hide for my entire life. That was soon to change dramatically, since I eventually went on several nationally televised shows such as Donohue, A.M. Los Angeles, and In Person with Maureen O’Boyle, as well as being interviewed for the national magazine First and other print media, but at that time I just wasn’t ready. They finally found an older woman in our group who bravely agreed to go on the show.
The night before the segment aired, we all sat around the conference table deciding who should pick up the mail the next day. No one apart from me thought this would present a problem; I remember saying ''Guys, I think we're going to need a truck''. Well, guess what? It is now 20 plus years later, and the mail is still pouring in to what is now the OCD Foundation in Connecticut. We did indeed need a truck. We still do. The OCD Foundation’s website currently receives almost 170,000 hits a month.
After three years serving as a founding Board Director of the Foundation, I decided to leave. Not only was it time consuming driving three hours back and forth every few weeks, but our small group was experiencing many growing pains due to the sudden tremendous exposure. In addition, for three years, I had been a sort of OCD hotline because my specialty as the Upstate New York Board Director was doing phone callbacks for people who had requested information. Because I was so eager to do this task, and apparently so good at it, I was given the bulk of the calls. I spent many hours talking to OCD victims from all over the world, most of whom were desperate and some of whom were suicidal, all at a time when I myself was still not completely well. It was enormously satisfying work, but typical of the OCD sufferer, I neglected my own needs. Eventually I needed a break.
So after three years of talking to people with OCD from all over the world, I left the Foundation and stopped being a nightly OCD advocate. The much-needed break proved very helpful and gave me some time to assimilate all that had happened to me. The medication continued to improve my symptoms after the initial large symptom reduction at eight weeks. It wasn’t a perfect cure, due to some rather annoying side effects and inconsistent good effects, but it was far better than the nightmare I had been living for so long.
But eventually I could not stay away from what seems to be my mission in life. I missed talking to and helping other people with OCD, and I knew from my own experience just how difficult that finding that help could be. In addition, years of talking to many people with OCD, plus having had it myself, gave me a unique perspective and a range of experience few people, even doctors, have. I knew I could do a lot of good for a lot of people and could provide the kind of help that had been unavailable to me when I had needed it the most.
I put an ad in the local newspaper and started a free local OCD support group, which was a huge success and which continued for over 12 years. I also taught a series of seminars locally entitled “How to Overcome OCD.” For five years I worked as Peer Program Director for a local not-for-profit agency helping people with all kinds of mental and physical disabilities; my specialty was OCD. During that time I held another long running and successful OCD support group. During all that time and continuing right up to today, the sheer numbers of people who come to me needing help and information about OCD astounds me. OCD truly is one of the best-kept secrets in medical history.
It often amazes me to discover the lengths that people have gone through to find me, and the strange twists of fate that have led them in my direction. People would tell me they cut out a newspaper or magazine article written about my battle with OCD and had carried it in their wallet for years because it had meant so much to them. It was and is touching and satisfying to have this kind of impact on people’s lives and to be able to help people get over something as awful as OCD.
Unfortunately, even after all these years, the need for information and support for OCD has not diminished. People still sometimes tell me that their health care practitioner has little or no understanding of OCD. It is clear that many of them feel much like I did over two decades ago, when nothing was known about OCD. This saddens me, as I cannot understand why OCD is not a thing of the past by now. That is why I have started 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 relief.
