I can vaguely remember a time when “it” wasn’t there. The “it”, which for twenty-two years, I didn’t know actually had a name. Somewhere around age seven or eight it set in. (“Did it follow a strep infection?” I would be asked decades later by a doctor, but I couldn’t remember by then with certainty.) Slowly, but very definitely, my mind began to work against me. It was confusing and became terrifying.
My first unwanted impulse was to constantly clear my throat, much to the annoyance of my family and those around me. Settling down to sleep at night was overwhelming — “Mom! She’s doing it again! She won’t stop,” cried my younger sister who had the misfortune of sharing a bedroom with me. I would fight the compulsion each night sometimes for an hour. The next compulsion which presented itself was the urge to roll my eyes up and back. Some people asked what I was doing, but I couldn’t explain that not doing so filled me with incredible anxiety. I would repeat the action so many times in a day that my eyes began to ache tremendously. I hated this; but it was as if a demon in my head was telling me notto do so would result in a greater discomfort.
Listen to Julie’s story here
“Is the muscle not tight enough and that’s what’s happening?” my mother asked anxiously. I didn’t know how to tell her that I did this eye-rolling willingly, yet at the same time against my will. When I heard Mother mention to Dad that perhaps they should take me to a doctor, I got nervous and was careful never to perform the action when my parents were in the room. One by one my strange compulsions came, usually for an average of about three weeks at a time, and each self-aggravating compulsion only left upon the arrival of a new one. I never got a break in between. As suddenly as one visited me, it would leave but only when something equally or more vexing took its place.
Another urge which overtook me was to momentarily shake my head. It was as if I was tossing my hair back — except that I had short hair. I did this so many times in a day that eventually my head ached with each twitch. Still, ignoring the urge left me thinking of nothing else but repeating the action! And thus the endless cycle of responding to the relentless demands which my own mind placed upon me was well established by my ninth birthday.
Mother had once told me “You know you can always talk to me.” I believe she truly meant this. Once, and only once, when I was ten I psyched myself up enough to approach her and attempted to describe the unwanted urges and intrusive thoughts which constantly plagued my waking hours. I was highly upset and struggled to find the words to explain the private hell I had concealed for several years. I didn’t succeed in my attempt to inform Mother; she looked at me confused and said, “Do you mean you are having headaches?” She was way off… I backed down from further explanation. “Yeah,” I said, “right now I have a headache…” She gave me two aspirin and sent me back to bed. I knew then that there was no way to accurately apprise her that my own brain agitated and terrified me. Today, I am fifty-one years old and have a perspective where I can honestly say that though their intentions were good, my parents — then in their mid-thirties — did not possess the aptitude to understand a mental issue like this. They were great parents but with their backgrounds and that day and age, they could not have absorbed what I was trying to tell them. I realize too that, as a parent, you never want to believe that anything is really wrong with your child. Easier to tell yourself that what you are witnessing is just a phase or, as Mother commented in my teenage years, nervous habits. And so the years rolled by with me hiding my compulsions as much as possible (I became a great actress) all the while knowing deep down that something was wrong with me.
The normal angst of adolescence was accompanied by an inner war and when I was thirteen I thought about killing myself. The impulses had become more sinister — urges to drown, burn, and cut myself. Trying to conceal the daily torment was exhausting. I believe the hand of God held me back from carrying out such an act; but if I had gone through with it, my family could have spent forever wondering what was so terrible? and never guessed the reason.
Sometimes in the high school library, I would search psychology books in an attempt to find out what my problem was. Did I have some form of mental illness? But people with mental illness cannot separate fantasy from reality. I knew on one level how ridiculous the impulses were.
I also struggled with checking things like the alarm clock — over and over at night to make sure it was accurately set for the next morning. I would do this between five and fifteen times; going to bed became the worst hour of the day. Often I would feel the need to repeat an action in multiples of three or until it just feltright. Three became a ‘safe’ number for me which my child-mind attributed to the Trinity — Father, Son, and Holy Spirit. I knew this was ridiculous but at the same time this queer thinking had a logic all its own. Better not tamper with something that seemed to come from somewhere else … it felt like a demon I would never be free of.
My childhood had some wonderful seasons yet always there was this nagging somethingI could never give a name to which overshadowed even the best of times. I learned to behave normally to those around me even when I had the urge to run and drag a razor blade all over my body. How does a child tell their parent that it is theirown mindwhich scares them?
Yet I never believed that I was the only onewho experienced these compulsions. Surely with all the billions of people on earth, somewhere there had to be someonewho experienced what I did. But I remember thinking, they are probably keeping it to themselves as much as I do and thus I will never know another person who goes through this. I considered trying again to inform my parents that something was wrong with me when I was fourteen but I had an older sister who was incredibly obstinate and made life difficult for the family as a whole. She created such chaos that my parents were often emotionally drained and how could I dump another problem on them? Though I never doubted I was loved, I often felt like a burden and didn’t want to make my parents sorry they’d had me. They had enough to contend with. I had some close family and friends over the years but never felt safe enough to reveal my strange problem to any of them. My one poor attempt with Mother was my last attempt for many years.
There were other issues in my life which caused me to be depressed and when I was sixteen I had a breakdown and was treated for depression. I had the opportunity but chose notto go to the hospital. How could I ever return to school with people knowing I’d done time in a mental hospital? Plus, I didn’t want to fall behind in my schoolwork or lose my after-school job. So I saw a psychiatrist a couple times a week for several months. It helped a few other things happening in my life. Years later, I would regret that I did not open up to the psychiatrist about my undesirable impulses while I had this chance, but I believed even then that trying to describe my anxiety to the doctor would not result in anything positive. It was just tooweird and even a psychiatrist couldn’t possibly understand. It’s laughable to me today that I ever thought this way because I know now that psychiatrists are shock-proof!
I prayed that one day I might know what it was that drove my own self so crazy. The day finally came in March 1987 when, just prior to turning twenty-two, I saw an episode on television’s 20/20program. Here were other people with checking compulsions, cleaning compulsions, and grooming compulsions! And for the first time in my life I learned “it” had a name: Obsessive Compulsive Disorder. The program stated that there was a new medication available to treat the disorder. Yet I resisted the idea of medication because I had learned to think of myself as weak mentally and thought that if I could just find the right atmosphere or lifestyle I would be able to shed the disorder. Mind over matter, right?
And thus I embarked on my quest to find the right balance where I would need neither medication nor everhave to reveal to anyone that I had this crazy disorder! My search took me to a sheep ranch in the Falkland Islands of the South Atlantic Ocean. I wanted to see if a lifestyle of physical labor and wholesome food would fix me. So I spent one of the best years of my life riding horses or motorbikes and gathering sheep, planting potatoes, working in the wool shed, and eating natural, mostly fresh food. I was happier than I had ever been and yet, had to acknowledge that my OCD remained unchanged. All the healthy lifestyle and positive thinking in the world was not enough. I returned to the USA, moved in with my parents, and decided to tell them what was really going on. I was twenty-five years old.
I will forever remember that evening when I sat my parents down and asked them if they had ever heard of Obsessive Compulsive Disorder. To my amazement they had. A friend of theirs had been diagnosed a few years earlier. I remembered one occasion after an evening in our home, this friend and his wife spent ten minutes in the doorway speaking in hushed tones with my parents before they left our house. After he departed I asked Mother what was going on. She stated that this friend had been “having mental problems.” When I asked what kindof mental problems, Mother, not wishing to gossip, replied rather angrily, “It’s none of yourbusiness!” Another lost opportunity…
So here I was a couple years later sitting down with my parents to inform them I had OCD. Mother was skeptical and said I could not accurately diagnose myself! At one point she became upset and left the room. I don’t think she could handle the fact that she had lived alongside this and missed it all those years. Dad was more supportive and took me seriously. Eventually Mother returned to the room a little calmer but wanted to know why, when they tried to get me help nine years earlier, I did not discuss this. I know too that it had been a financial hardship at the time and I did regret that I didn’t open up more at that earlier opportunity.
I had some savings set aside and told my parents I was going to look into getting medication for my OCD before I set out on my own again with another job. I just wanted to live at home for a little while and not have to be sneaking around seeing a psychiatrist; I thought Mother and Dad should know what was going on.
And what psychiatrist did I seek? The one who had helped me with depression nine years previously. I remember asking if this doctor treated people with OCD and being told “yes.” What a dummyI told myself, why didn’t I speakup years ago! Well, I felt better when the doctor explained to me that while she had heard of OCD years earlier, there was not much successful treatment for it. This made me feel a little better; perhaps it was just as well I had stayed silent back then. It may have only caused my parents greater concern without real benefit to myself.
I left the doctor’s office that day cautiously optimistic: I might be one of the lucky ones who would benefit from the drug Anafranil within two to six weeks. To my amazement, it worked the next day! I had an episode of racing heartbeat and blurred vision but at the same time I had a reduced interest in performing the checking, cleaning, and grooming compulsions which were all too familiar to me. I was skeptical however; it seemed too good to be true after so many years. I put the medication to the test and tried to force my mind into some of the old patterns of thought but noticed I lost interest rather quickly.
What a relief to finally have a clearer mind. I wasn’t 100% free of the disorder but able to function better. I stayed with that medication for twelve years before experimenting with numerous others which came on the market later. The down side of Anafranil for me was the frequent fatigue. It was not unusual for me to nod off in business meetings or even during the best of sermons. Driving for longer than thirty minutes sometimes became next to impossible.
During those six months when I was again living with my parents, Mother noticed something in the newspaper about a support group forming in our hometown. I went every month and it was so refreshing to talk with others who suffered as I did. A dream come true! I also received some help in a monthly newsletter from the International Obsessive Compulsive Disorder Foundation which is now based in Boston, Massachusetts.
I was able to attain a six month supply of my medication and in January of 1991, volunteered with a team of Americans to travel to Romania to upgrade destitute orphanages. We lived without heat or consistent running water that winter so my grooming routines were seriously challenged. I couldn’t easily lather my face with soap three or four times daily so learned to make due with wiping a little rubbing alcohol over my complexion. I also had to mentally ‘surrender’ my body to bedraggled orphans who were starved for physical affection. The orphanage for these mentally and physically handicapped children had no bathing facilities in the winter and only limited possibilities during summer. And forget about having toilet paper or tissues on hand … so I learned to enjoy the company of children with crusty eyes and noses on a daily basis. It was difficult but I was committed to something greater than my own happiness and thus functioned reasonably well in that unsanitary, impoverished atmosphere. The transformation we volunteers began in a country that was finding its way out of communism was slow but exciting. I returned to the USA for a few months to work at the charity’s headquarters before returning to Romania in the autumn of 1991. Eventually I came back to the States for a paying job and some spinal surgery I had been putting off. And of course the OCD followed …
When I was twenty-nine the man who would become my husband told me he loved me. That same evening l disclosed to him my struggle with OCD. Fortunately, he knew something about it and saved me a lengthy discussion of my own problem. He didn’t ask for much detail and I didn’t dwell on it.
When I married at the age of thirty-one, I was determined my OCD notplay a big role in my marriage; I had waited a long time to meet the right guy and I wasn’t going to let OCD make a mess of things. I did reasonably well with my checking compulsions but not so with the intrusive thoughts. At least I didn’t jump out of bed repeatedly every night to check to see that the stove or iron was really off, and kept my alarm clock checking to a minimum. I didn’t want to disturb my husband’s sleep or make him regret marrying me. I suspect if I had married earlier in life I would not have been this successful in resisting the checking compulsions; maybe God withheld true love from a man until I was on medication and gained a little control.
After twelve years on Anafranil, at age thirty-seven, I went to another psychiatrist. I was aware there were a significant number of other medications to treat OCD and wanted to try some in order to combat the frequent and lengthy naps I often needed. Over the next two years this doctor and I went through about ten medications before we settled on Cymbalta as the one which seemed to have fewest side effects for me. I still got ‘stuck’ sometimes leaving the house. This was not a problem if my husband was still at home, but to be the last one leaving presented me with incredible anxiety — what if I had left the stove or curling iron on and this resulted in a fire? I did not want to be responsible for burning the house to the ground. What if water were dripping from a sink somewhere? This could cause damage or a costly water bill. Trying to get out the door alone was frequently a challenge. Then checking to see that the door was really locked behind me … I was sometimes late because of this mental chaos.
But life marched on and I tried to be happy and said little to my husband with regard to my OCD; he couldn’t fix it anyway so why make him crazy with my issues? I still had problems on some level but I didn’t share all the details as I wished to enhance my husband’s life, not bring him down. He was someone I could certainly lean on with troubles, but my love for him was such that I wanted to spare him aggravation. Intrusive thoughts still ebbed and flowed, some years more than others, and fortunately my husband didn’t insist on knowing the details of such thoughts. I didn’t wish to tell him, or anyone else for that matter. These were notall horrific, gruesome thoughts as an outsider might suppose; just uncomfortable, subtle things which played over and over like background noise.
Once I worked part-time for an orthodontist. A brilliant but demanding man, I was warned he’d had some difficulty keeping an assistant. Everything needed to be done just so. I was the last one to leave the office at closing and there was a lengthy list of duties to be carried out so we could start the next day well-organized. The first evening I was there by myself I carefully wiped down all surfaces, turned off numerous switches, and laid out the following day’s instruments evenly spaced and pointing in the same direction. When the doctor came in the next morning he said he’d never had anyone who “got it all down” the first time. “Are you one of these people with Obsessive Compulsive Disorder,” he asked jokingly. I never revealed the truth to him or any of my co-workers.
Unwanted thoughts and urges plagued me heavily the year I turned forty-five and I decided to look into brain surgery. I researched what was involved in obtaining a stereotactic cingulotomy — most of these surgeries were being done in Boston and Chicago. But all the information indicated that I was not suffering enough in my disorder to be considered a candidate for such surgery.
“You’ve never been hospitalized due to your OCD, you’ve always been able to hold down a job, and are in a thriving marriage,” the specialist I went to see informed me. I was disappointed to learn I was doing so well!
How much did I really benefit from medication? I would wonder from time to time. Was it worth the cost? I was forty-six when I read an article which stated that one third of people with OCD discovered that by the time they reached middle age, they did as well without medication as with medication. I wanted to be in that one third! So, under the supervision of my doctor, I gradually went off my medication. I seemed to do about the same without medication for perhaps two or three months but eventually my husband told me what I already feared: my behavior was becoming erratic. “I think you’d better go back on your medication,” advised the Love of my life. I started on Wellbutrin a couple days later and thought I could calm myself until an encounter with a policeman who stopped me for a minor traffic violation. This resulted in my having an emotional melt-down and insisting the officer either drive me home or to a hospital. He spoke with my husband on my cellular telephone and thus my husband came to collect me from the scene.
Six months went by on Wellbutrin without relief from the intrusive thoughts. I found myself agitated and fearful I would hurt myself or do something I would later regret. I went to another psychiatrist. This kind man wanted to delve into my childhood which I had no interest in reliving. When I considered the time and money spent on my OCD … I just asked for some immediate relief from my current turmoil. I left his office with some samples of Buspar and a low dose of Haloperidol. I was able to calm down in a couple days. I functioned better but still struggled with intrusive thoughts.
Four months went by and I realized I would probably neverbe free of Obsessive Compulsive Disorder. But I had a wonderful husband, darling daughter, had worked in several different countries, and had many good things in my life. God and I had duked it out over the years and I knew I had been greatly blessed in this life despite being allowed this ‘thorn’ in my flesh; OCD. I never asked myself why mebecause I knew God could look back and say why not? I always believed the Lord doesn’t causebut allows pain in our lives because without it, many would never seek Him. I am aware too that there are worse afflictions … but if I could relive my life and choose to remove one problem from it, OCD would be the one.
One day in early April just before I turned forty-seven, my husband and I started to prepare dinner when I noticed the light on the toaster oven.
“Did you just turn that on?” I asked my husband.
“No,” he replied, “It must have been left on all day.”
I had always thought the discovery of something left onwould cause my OCD to go into overdrive. But to my amazement the reverse happened. I relaxed a little knowing it was possible for an appliance to be left blazing hot on the counter and yet not result in fire. It did not have to become a catastrophe!
Intrusive thoughts still banged away in my head and one day when I was alone I broke down crying. Eventually I resolved that, though they made me anxious, they were just thoughts and there was little I could do to chase them out. Suicide was not an option so I would just have to carry on, as I always had, and accept a certain level of torment in my life. Death would come for me one day and I resolved to just try to make life good for the ones I loved despite being miserable in my own mind. It was a sobering thought but I was helpless to completely rid myself of Obsessive Compulsive Disorder. Something in me broke that day. A bit like the person with anorexia nervosa who finally realizes that they will never achieve a satisfactory weight; the illness will always imply that if they could just shedperhaps three more poundsthey would be satisfied. They never arrive at an acceptable weight, the illness prods them on in search of an always elusive number on their bathroom scale. Thus it was with my OCD, I could never give it what it wanted; it always asked for more. “To hell with it,” I decided one day as I left the house without multiple to checks to make sure all was well, “the whole place will have to burn to the ground because I cannotlive like this any longer!” I slammed the door and, to my amazement, it was all still standing when I returned home that evening.
A couple weeks later, it occurred to me that I had been bothered very little by my OCD since that day I cried so hard by myself. But I believed it too good to be true and surely this could not last. Two more weeks went by and I realized the intrusive thoughts were not weighing in as they so often did. I was confused and skeptical so, ridiculous as it sounds, I forced myself to dwell on the things which used to make me so uncomfortable but found I lost interest. This was the ‘flooding’ I had read about with Behavior Modification Therapy. Another thing I started to do if I felt the need to check something in the house was to tell myself, “If in fifteen minutes I stillfeel convinced that the stove, iron, sink (or whatever) is on, then I will check it.” I discovered that usually the anxiety dissipated before the fifteen minutes were up and I didn’t feel the need to check. Two years later I would read “Brain Lock: Free Yourself from Obsessive Compulsive Behavior” by Jeffrey M. Schwartz and discover that this idea of waiting ten or fifteen minutes was not unique to me; someone else had already thought of it. How I wish I had read that book upon its publication in 1997! I learned to endure the anxiety brought on by OCD instead of trying to escape it. To my surprise, the anxiety didn’t last as long as I’d always feared it would.
It was a new approach for me, to actually combat my OCD instead of trying to flee or simply succumbing to it. If I did fail, I tried not to hate myself for it but instead just go forward. Even when I failed to successfully ignore a compulsion, I refused to throw my hands up in despair. I would go forward again; thus the idea of ‘failing forward’ was born. Two steps forward and one step back but at least I was making progress. I never could have done this as a child because the OCD so terrified me I thought I must be subject to it or else some dreaded event would occur. Strange, when I look back on the sad things which happened in my life, for example the death of my mother when I was twenty-eight, I never once spent a moment believing that it had occurred because I refused to perform some ridiculous compulsion! I wish I could have realized this decades earlier.
I learned to do the right thing and ignore the compulsions, not always completely, but more and more frequently and enduring the anxiety became slightly easier over time. More important than how I felt was the need to do the right thing because, I discovered, feelings followaction. I concluded I’d been doing it wrong for so many years — the moreI checked to be sure an appliance was off the lesscertain I became! This is the bizarre twist of OCD: the more you act on an urge, the less convinced you become. Oh there is momentary relief upon checking or cleaning or grooming — but eventually the impulse returns. What we feedwill growand OCD will always demand more and more …
Another method I used to break the hold of OCD was to intentionally repeat an action the ‘wrong’ number of times. Instead of my usual three times, I moved it to four. This agitated the OCD demon and left me feeling rather smug; I would now aggravate the OCD instead of it aggravatingme! It was initially daring and uncomfortable but it helped break through the nonsense which had controlled me for so long.
I told my husband about these new mental strategies and he was thrilled for me but at the same time, didn’t want me to go off my medication. I had changed medication five months earlier so I couldn’t necessarily contribute my improved mental state to a suddenchange in medication. I had made no change in diet or lifestyle either that April when things began to improve for me. And for what we were paying for my medication, my husband and I both decided not to rock the boat. If I was receiving some benefit from the medication, I didn’t want to go off it and wreck my mental state for fear that I might never find my way back!
And so now, six years later at age fifty-three, my OCD is only a fraction of the distraction it once was. I do not believe I will ever be completely free of the disorder. I still get stuck occasionally with the checking, grooming, cleaning or intrusive thoughts. But it is just a brief moment out of my day; not the persistent background noise it was for so many years.
I wish I could have incorporated these strategies into my thinking decades ago; I mourn what the disorder has stolen from my life. The multitude of wicked impulses, nights spent trying to fall asleep, tears and hatred of myself … it is endless. Some days it is hard not to be bitter. A myriad of distressing impulses and ruminations had ruined my childhood and dragged into adulthood. So much wasted energy. And all for nothing.
A couple times when my husband and I were already in bed, I hollered to my teenage daughter who was still out in the kitchen, “I know I shouldn’t involve you but just look at the stove and tell me it’s off so I don’t feel compelled to get up and check it myself.”
“Oh Mama,” she teased, “You left it on and the whole house will catch fire and it will be your fault!” We all laughed. I am not a fan of most television, but my daughter had me watch a season of television’s “Monk”with her and it was refreshing to be able to laugh at this Obsessive Compulsive Disorder. That was something I never could have done years ago.
I have shared little about my OCD with people over the years; it is not the first thing I’d want folks to know about me. I never even mentioned my diagnosis to my sisters. I know after some time they found out about it, perhaps from Mother who needed to confide in someone. I don’t hold this against her. Mother once told me she blamed herself to some degree for my OCD, but I never did. As far as the family learning I had this embarrassing problem, the reality is that even if you tell just a few people, eventually someone needs to unburden themselves and word gets around. And while my husband or daughter might joke with me about my OCD, I would not be open to that from most others.
As I write this, I am fifty-three years old. A little more than half my lifetime ago, I opened up to my parents about my OCD. I used to think it would have been better if I could have made them understand my problem while I was still a child, but looking back now, I believe I did the noble thing by suffering in silence. It would only have caused them distress and financial burden without much improvement.
When I was forty-six I finally found a support group in the city where I currently reside. It is ironic that not long after I began attending the monthly meetings, my OCD lifted. Perhaps God was finally granting me a reprieve after so many decades. I have been doing so well with regard to my OCD these past four years that I don’t even feel as though I need a support group. But I go for all the other years in my life when I struggled and had few people who understood first hand. And if I can be an encouragement to others not as far down the path as I then I want to do that. Perhaps I can cause them to arrive sooner at some of the conclusions I did. I hope someone else won’t have to live under the shadow of Obsessive Compulsive Disorder as long as I did. It is ironic that when I lost all hope of being able to function without the disorder, Hope arrived.
By Julie Traeger Julian (email@example.com)