My Battle with Obsessive Compulsive Disorder
It was August first. I had been in bed for three months. I was paralyzed -- not physically, but with a fear so great that every waking moment was spent dreading the next ...and waking moments were all there seemed to be. If I slept at all, it was for maybe fifteen minutes a night. If I ate at all, it was one can of soup a day, provided the nervousness I felt didn't cause me to reject all food completely. I had lost thirty pounds. I had not taken a shower in weeks. I cried constantly. I wanted to die. I had never known such great pain in my life. Yet, I was told by every doctor who examined me that there was absolutely nothing wrong ... at least not physically. I was convinced that I must have some type of sleep disorder that was causing all this. I thought that if I could only get to a therapist who knew about sleep disorders, he could give me some medication and I would be all right.
Of course, I couldn't get out of bed...it was, after all, August first -- and that date had a one in it. One was a "bad" number and if I did anything on the first, I was convinced it would not only end with disastrous consequences, but, most likely death...not only death, but an eternity in hell! Of course, I couldn't get out of bed on August second, either. The second was only one number away from one, so that wouldn't be acceptable. The third was just as bad! It was one week away from the tenth and ten had a one in it. The fourth was impossible. It was one week from the eleventh and that had two ones in it! Apparently, I just wasn't meant to ever get out of bed again.
There were exceptions. I felt I was "allowed" to get out of bed to go through the garbage dumpster for hours on end at my apartment complex to make sure I hadn't thrown anything important away. I was allowed to get up and check every wall in my apartment to make sure I hadn't written obscene and inappropriate comments there. I was allowed to go downstairs and watch religious programs on television (but only religious programs ... anything else would offend God.) I could get up to touch every doorknob five times and turn off every light switch three times. I could also get up and check my body in the mirror to make sure I hadn't written vulgar comments on myself with indelible ink. Oh, yes, I was "allowed" to get up and do those important things...I just couldn't do little non-essential things like eat, sleep, go to work, be with friends or get therapy!
I had indeed become a shadow of my former self. Of course, if the truth be known, that former self was never too "normal" to begin with. Throughout the first 21 years of my life, I had spent countless hours doing what I considered to be nutty rituals in order to keep bad things from happening-checking, repeating, praying, counting and saying things over and over in my head. Of course, I was sure those things didn't have anything to do with what I was going through now. I merely had a sleep disorder. I had gone through elementary, junior high, high school and college and no one had ever said anything about my little rituals...And here I was , a college graduate living on my own, and I was still able to get away with it without anyone suspecting. Yet, I knew something was terribly, terribly wrong. My lifelong ambitions about leaving North Carolina to go to California and become an actor had been replaced by thoughts of whether I would be able to prepare my next meal (if I could even eat). Indeed, I now simply wanted to survive...and the longer I lay in bed on that August first with a one in it, the more I realized I was dying. I came to believe that without some help-and soon-I was not long for this world. At the very least, without help, I was sure I would be institutionalized forever.
It took seven hours to make a thirty minute trip, but the next day I drove myself to Duke University Hospital to try to find that help. Four times, I got half way there and turned around and went home because I was convinced that August 2nd was just not the "correct" day to be doing this. I also had to stop five additional times along the way to make sure I had not written obscene comments about people on billboards. Also, I made the usual stops to make sure I had not run over people or animals on the way...But at last I made it. Of course, now that I was there I had no idea what to do. I sat in the car for half an hour before wandering around the Medical Center in a complete haze, looking for whatever it was I was looking for. I don't know why I simply didn't make some telephone calls from my home, but, for some reason, I felt it had to be done this way. The hot, August North Carolina day made me feel even worse as I wandered aimlessly from building to building. Finally, I stumbled upon a psychiatric treatment center way upstairs in one of the main buildings. I jotted down the telephone number then drove back home. This little excursion to Duke University was about the first time in three months that I had been outside my apartment. It was an ordeal, but, in the weeks and months that were to follow, I would draw strength from it, knowing that even though I was at my absolute worst, I was able to do something to help myself.
My first appointment in therapy came a week later, but it wasn't until mid-October that I even heard the words "obsessive compulsive disorder." I was at first treated for a sleep disorder because that is what I was convinced I had...and I wasn't about to tell anyone about my horrible obsessions and silly compulsions. My therapist and I spent hours doing relaxation exercises, all to no avail. Finally, he did prescribe some medication to help me sleep and that worked up to the point that I was now getting about two to three hours of sleep a night. It wasn't until he sent me on a fact finding expedition at a local bookstore that I began to understand (after over 20 years) some of what was happening to me. He sent me to the psychology/self-help section to get some books on sleep improvement. As I was browsing through a mass of books that I was sure would offer no relief, I happened across one entitled, "The Boy Who Couldn't Stop Washing." I (of all people) thought that sounded odd. I had heard of people who washed their hands a lot, but I certainly had never heard of someone who couldn't stop. I glanced at the book, only to find that many of those mentioned did some of the very same compulsions that I did. There were checkers, repeaters, counters and even those with religious obsessions...all kinds of people like me. I never bought and read a book so fast in my life! At my next therapy session, I showed the book to my doctor and I said, "This is me." In what I have determined was a miracle from God, my therapist said that he had a lot of success in treating obsessive compulsive disorder. I say it must have been a miracle because I would later learn that many doctors had not even heard of OCD, let alone treated it.
At first, we just talked a lot about the type of treatment I would primarily be facing, behavioral therapy known as exposure and response prevention. He gave me an example of a woman he had successfully treated who was extremely obsessed with dying due to contamination from dirt and germs. For a period of one year he saw this woman, and each time put more and more dirt on her, not allowing her to wash for days. He also made frequent trips to her apartment where he scattered dirt haphazardly and would not allow her to mop or vacuum. Eventually, she was able to successfully deal with her obsessions and compulsions. He asked me if I thought I could stomach some serious exposure and response prevention, cautioning me that many OCD patients sometimes felt the cure was worse than the disease. I assured him that I would stomach anything that would give me the chance of getting out of this hell I was in. And so it began...
I was put on a regimented daily schedule that was like something out of the army. Every hour from the time I woke up to the time I went to bed was planned. There was not time for checking or doing much compulsive behavior. Built in to my schedule was both a worry (obsession) period and a relaxation period. The worry period came right after breakfast. I was allowed, even encouraged, to worry for one hour...but it was the only time during the day I was allowed to worry. If worries or obsessions began popping up at other times, I was taught techniques to try and alleviate them. Two that worked really well for me were thought stopping and the rubber band technique. Every time an obsession would come up (at first that was 24 hours a day), I would imagine a bid red sign with STOP written on it. That meant I was to stop thinking that thought immediately. It was all right to replace the obsession with another thought (thought switching), just not another obsession. Another way I dealt with unwanted thoughts was by wearing a rubber band around my wrist and snapping it every time I got an obsessive thought. Needless to say, I had red wrists for a while, but eventually the pain began to pay off...the obsessive thoughts lessened with each snap of the rubber band. My one hour relaxation period came at the end of the day in the hour before I went to bed. This was very important, because it also induced sleep. I would sit quietly and read a book or listen to soft music-no TV, no newspapers, no magazines or anything that might be the least bit disturbing or upsetting. After the relaxation period, I would immediately get to bed. My sleep was improving by leaps and bounds. This seemed to help everything overall a great deal. In fact, sleep, regular exercise and daily walks, and regular, healthy meals were also part of my schedule. My therapist shared with me an important rule in dealing with OCD and anxiety disorders-HALT! That means never get too Hungry, Angry, Lonely or Tired. He also taught me a lot about positive thinking and overcoming my negative attitude which was a hindrance to my progress. I read "The Power of Positive Thinking" and tried to apply the principles it espoused. I also think I read every book about OCD and anxiety disorders that had ever been written. I was determined to get over this! The very thing that had made my life a living hell (my obsessive, determined personality) was going to turn out to be the very thing that would help me get better.
As far as the behavior therapy went, I was taught to do the opposite of what I felt I 'should' do. I forced myself to watch television programs that I felt God disapproved of, I purposefully messed things up in my room, and I deliberately thought about and even said OUT LOUD numbers and words that I felt were "bad." In one of the more bizarre (but effective) exposures I tried, I actually took an ink pen and purposefully wrote obscene words on my body. I did this whenever I felt the need to check in the mirror to make sure I had NOT done this. The key for me was to do the opposite. Of course, there were some exposures that couldn't be done in vivo. For these, we used an exposure in imagination technique. For example, I often had an obsession about dying and going to hell. Since it was not really possible to expose my physical body to death, I would imagine what hell was like. Sometimes I would even create a horrible hell scenario, write it down, and then record it on to an endless loop cassette tape. Then, I would listen to it over and over again until the anxiety would finally go down and the obsession would lesson.
Perhaps the most helpful thing I learned in therapy was how important it was for someone with OCD to learn to take risks. The reason we do compulsions is our fear of something awful happening if we don't. We need to learn to accept the fear and live with it. Sometimes something awful might happen, but that's just life. More often than not, we will soon see that our fears are groundless.
Drug treatment has also been important in my battle against OCD. For me, it was been an important supplement (not substitute) to behavioral therapy. During all of this treatment for OCD, I was also (as are many OCD patients) burdened by tremendous depression. I learned that many of the techniques I tried for OCD were also very helpful in dealing with my depression. The drug treatment also played an important role in overcoming that depression. I have been recovering from OCD for seven years now. Five years ago, I felt well enough to make the move from North Carolina to California to pursue my acting career...although, so far, with only limited success as far as the career goes. As evidenced by my struggles with OCD, I will not give up my battle to make it in the entertainment business. In fact, that struggle seems small by comparison. People tell me that if I put the same energy into my career that I have put into battling OCD, I should have no problem getting work. I will always know, though, that the greatest thing I've accomplished is effectively being able to deal with OCD. The second greatest thing is helping others with similar problems. That is why I became a charter member of the OC Foundation (and currently vice-president). In fact, we have recently embarked on a program to take our message into the school systems. In conjunction with UCLA, we are operating under a grant to provide teachers, administrators, guidance counselors, nurses and school officials with the tools to recognize and deal with OCD in students. Hopefully, this can save some children years of needless worry and frustration.
Getting to the point in my life where I am today was not simple... but it has certainly been a hell of a lot easier than dealing with the horrors of OCD every day. I have had several setbacks along the way. When I first moved to California, my obsessions and compulsions completely disappeared and I pronounced myself cured (silly me!). I proceeded to go off all of my medication and cease all behavioral therapy. Needless to say, two months later it all came back.
It has only been in the last two years that I would consider myself symptom-free. This did not come until I made the conscious decision that I would NEVER, EVER do another ritual as long as I live. I had been cutting down tremendously over the years, but I was only able to get as well as I am now after I deliberately chose never to do another ritual under any circumstances! I used to think that nothing good could have possibly come from my having OCD, but if sharing my story helps others with this disorder, then I stand corrected. Believe me, I wish I never had OCD. It does make me sad to think of all the lost years. At the same time, however, I do realize that maybe I can now make those left to come even better. My last seven years in recovery have been so much better than the first 22 that I spent not knowing what I had. YOU CAN HAVE OCD AND HAVE A GOOD LIFE! I am proof of that and I have met many others who are as well. I hope my story has helped others with OCD as much as meeting people who live daily with this disorder has helped me. My story is simply that...my story. The methods and treatments employed in my battle with OCD worked for me. They may not work for everyone. There are ways of getting better that are right for every OCD patient. I urge everyone with OCD to seek out a qualified therapist and get to work! It's well worth the struggle. Best of luck in the war against our common enemy!
Source: "On a Personal Note: My Story," C. Lambeth, former Vice President, OC Foundation of California, Newsletter 1997.