OCD, Why Me?

Full Circle – My Journey

An Essay

Full Circle. My journey started in preadolescence with a bomb dropping at ground zero in the maelstrom called Obsessive Compulsive Disorder (OCD). For many years I did not know what was causing my symptoms and that they were part of this disorder. Years of searching for answers and single-minded determination acted as the vehicle navigating points around the Circle. This story describes segment by segment the Circle’s completion.

How do I begin my story? Do I start when I was six years old, had just seen a dead body lying in state at the local funeral home and experienced the murky intrusive thought that I was glad this person had died? Is that when the seeds of guilt and shame were planted? Do I start when I was a preteen and as a reward for earning good grades received a transistor radio? As I sat on the couch trying to listen to the radio, I felt vaguely anxious because I had the nagging feeling that I didn’t deserve the reward. Do I start with recalling the trigger that led to my first psychiatric hospitalization when I was thirteen? That I could not get out of my head the horrible intrusive thought that I would somehow, in my sleep, get up in the night and cause harm to my parents? I struggled alone for days trying to repress the obsessions but they continued. I couldn’t eat or sleep and attending school was impossible because my anxiety threatened to swallow me whole. I experienced the first time I acted on a compulsion when I told my mother about this horrible turn of events. I hoped that the conversation would be like a confession and relief would be the outcome. Mom would know I really didn’t mean these thoughts because she knew who I really was. Most importantly, by talking to her I would experience relief and the thoughts would not return. Tearfully, and with crushing dread and embarrassment I described to her what was engulfing me with fear and confusion. I remember feeling like a small child, but in reality, a thirteen- year- old asking to sit on her mother’s lap and to be enveloped by her arms as I described the most difficult experience I had ever encountered. My mother was horrified and knew I had a problem that she didn’t know how to fix. Maybe the family physician could help.

The visit to the family physician culminated in admission to a small county hospital. The full court press of diagnostic testing began. Surely there was a physiological or metabolic reason I was having this trouble. Then came the evening when the physician came to my bedside and told me all the tests came back stone cold normal. Then he said to me, “I hate to ask this question but are you saying these things to hurt your parents?” I looked him straight in the eye and began to cry and shouted “NO!”. He did not have the training expertise to treat my symptoms. I would need to be transferred to the psychiatric unit of a university hospital where psychiatrists would talk to me and reevaluate.

That hospitalization was the beginning of a forty-two- year odyssey of intermittent exacerbations of the obsessions and compulsions culminating in repeat hospitalizations and therapy. No definitive diagnosis was determined and the stress between my parents and myself grew. There were painful discussions they endured with psychiatrists and then between the three of us. Their frustration grew and that was understandable. Hospitalizations cost money they did not have. I couldn’t fix this problem and now the doctors were grasping at theoretical straws. Straws that pierced my self- image and self- esteem. The doctors had other ideas to uncover a diagnosis. Was it because my only sibling was eleven years younger than me and secretly, I resented my baby sister? Maybe some sort of repressed jealousy? No. Was it because my parents argued a lot about their finances and tense relationships with other family existed due to funding of the family farm? After all, I was a major reason cash flow was depleted. My parents did not have adequate insurance to cover my protracted hospitalization. No. Research is integral to academia at a learning hospital so cognitive evaluations were performed to see if my symptoms caused any cognitive deficits. They had not.

The doctors’ idea that broke my heart was the hypothesis that maybe my dad had abused me and I was acting out. That was not true and indescribable guilt cut me to my core. My dad is 89 years old and to this day he has never initiated any conversation about this dark episode and the scrutiny he encountered. That is how much it hurt him. Years later I was able to approach him and let him know that OCD was what had caused such turmoil in our lives. I assured him he was an awesome father and could not have done anything to prevent my symptoms. I’ll always remember his response to this information. His head popped up, he looked at me and said, “Oh?” His countenance seemed calm and we went on without any more discussion.

I repeatedly asked myself what was wrong with me and why couldn’t the doctors identify my problem? My symptoms and hospitalizations caused me to miss normal, fun adolescent experiences. I missed a lot of school, and was only allowed a “pass” to leave the hospital to attend my junior high graduation. My parents drove me back to the hospital after the ceremony and I sat crying the back seat and overheard my mother lament to dad that my situation was “so sad” and what would they do about it?

Guilt, shame, and embarrassment became my constant companions. Intense frustration would boil over into anger and sometimes rage. My situation hit me like a brick wall. I realized with nauseating clarity that my symptoms weren’t going to go away. I was destined to miss much of what I could see my peers experiencing and would angrily think to myself “it’s so nice you’re having such a fun and carefree time. Too bad I’m suffering so much”.

The one bright spot during this early time were the nurses at the hospital who talked with me, encouraged me to laugh, comforted me when I cried, and ultimately encouraged me to keep searching for answers. At that young age I had a strong religious faith and that was tested when thoughts would enter my mind that maybe I didn’t know God, maybe I had been abandoned by God, or maybe I hated God because of my circumstances. I shared those feelings with one of the nurses who very wisely and compassionately counseled me. I can still see her dark brown eyes and hear her soft, calming voice. She spoke with a heavy Latin accent and her words were like a balm to me as she said, “God loves you so much. He knows about you and what is going on. You can be assured that nothing you think will change God’s love for you.” I will admit there were times that I would cry out in prayer and plead with God to heal me and remove the pain I experienced. My plea was not answered in the way I anticipated but I would hold on to that nurse’s counsel for the duration of my journey and I ultimately would grow into a more mature faith. In retrospect I was never abandoned by God but strengthened and shown a pathway of purpose which included a nursing career and many opportunities to repay to others the care and compassion shown to me.

There were brighter periods in between hospitalizations. OCD can cycle through periods of symptom severity and life can seem normal for brief periods. Eventually there will be some kind of trigger. The obsessions and compulsions returned. When that happened, it would cause so much anxiety and depression that I would need to be hospitalized again because I did not have the coping skills to manage at home. During those repeat hospitalizations, doctors still scratched their heads at the puzzling presentation. They only heard me speak of my obsessive thoughts and tried treatment with psychotropic drugs that were meant for other disorders. The drugs never worked. They only clouded my head and made me so sleepy that I could not function. Why did the doctors not recognize my history of intrusive thoughts and compulsions as hallmarks of a type of OCD? Why did they not recognize that symptoms caused me such anguish because those thoughts were antithetical to who I was as a person? I don’t know. I have to tell myself that these events occurred in the mid 1970’s and symptoms of OCD were not widely recognized to present in this form. It makes me feel better to accept that explanation.

Things would begin to take a turn for the better. I met a young man who made the effort to get to know me, made me laugh, and who had a gentle spirit that was irresistible. After a period of dating him I felt like I could feel safe sharing a very edited version of my past. He would listen to me. He encouraged me and didn’t treat me like someone with a psychiatric problem. He wouldn’t let me wallow in self -pity or anger. He encouraged me to be the NORMAL person I was, even though I thought my situation was so aberrant. Why would anyone want to waste their time on me? He gave me the gift of perspective. Yes, I had this “issue” but he made me believe I was not crazy and there was hope for a happy life. This relationship evolved and resulted in marriage which now has lasted 44 years and there were three amazing children born to this union.

Even though there remained difficult years with waxing and waning of my symptoms I became stronger requiring no further hospitalizations and continued to look for new avenues of knowledge that would lead me to a diagnosis. I had two or three brief counseling sessions with other counselors that allowed me to get through the rougher episodes. At age 42 I made an appointment to see a psychologist because I was having yet another exacerbation of symptoms. He listened to my extensive history and told me it really sounded like I had Obsessive Compulsive Disorder. Finally, a name and a diagnosis. He gave me educational material to study regarding the disorder and the channels of knowledge and understanding slowly started to open and began to flow with streams of insight and information. The psychologist also recommended a medication that he thought would help my anxiety and obsessive thinking. The medication did help and made life easier, but it did not completely remove my symptoms. I still thought that ultimately my symptoms could be eradicated and I would be cured of OCD.

I practiced nursing for 39 years and I believe that profession allowed me easier access to research resources and avenues of treatment. I also developed an honest and therapeutic relationship with my primary care provider and found I could talk about my OCD and describe different levels of depression I experienced. My provider was nonjudgmental and, most importantly, reinforced that there were options for medication changes and further counseling that could be of great benefit.

Another change was about to occur. The last arc of the Circle was approaching completion. I was able to shed some of my guilt and embarrassment about my “past”, at least long enough to feel okay when talking to my provider. I had a very small circle of friends who knew only that I had OCD and was on medication. To be able to tell others about my diagnosis was, in a way, liberating. I was discovering that the years of uncertainty and suffering had made me strong in ways I could not have anticipated and I had a real compassion for others. I could listen to the hard things people shared and not be put off or offended by their stories. Turns out all of us have “chinks in our armor” and none of us are without struggles.

I retired from nursing in December, 2019. I had been so consumed with day to day work responsibilities and family obligations that my thoughts were mostly centered on immediate real time concerns with only the rare glimpse of intrusive thoughts that seemed to intrude my consciousness but did not hang around (I have since learned that activity and intellectual diversion can help diffuse the cycle of those thoughts. It’s a component of Cognitive Behavioral Therapy. That subject is for another time). When the daily work grind ceased there were triggers that reminded me of previous exacerbations of OCD. The thoughts resurfaced with a vengeance. But this time I had a new resolve to return to counseling and made a single- minded effort to find coping tools that would allow emotional equilibrium again. I was determined to be more transparent with my husband and include him by sharing my concerns and intent to find permanent coping solutions. I had always been too embarrassed to share every detail of my struggles with him. After all, at some level I still believed (although inaccurately) that there was a part of him that really considered me crazy. I asked him to accompany me to an office visit with my provider where I laid out my intent to really dig in and find lasting solutions to manage my OCD. I shared in that visit that over the course of my life, I had missed out on many opportunities to travel and serve others and experience new and exciting things because the thought of moving out of my comfort area and away from home always triggered symptoms. This statement really struck a chord with my husband and I began to let him see some of the scars that had marred some of my aspirations. I got a referral to a counselor that had a significant background in helping patients with OCD. This was big.

That counselor has worked with me for nine months and there have been important strides made in learning to live with OCD. Cognitive Behavioral Therapy, specifically ACT therapy (Acknowledge, Commit Therapy) is proving to be very helpful and can remain a mainstay in my coping arsenal. Hands down the most difficult aspect of my counseling has been coming to the realization that I will not be cured of OCD. Medications and treatment tools will help manage symptoms and I know I can continue on with a full and meaningful life. My counselor asked if I would consider journaling my experience from early onset to the present. I began to write about those years and I realized I had repressed those memories. Through the years I always thought extended family and friends probably gossiped about my situation among themselves and had their own assumptions, not the least of which was a judgmental attitude about my parents and their ability to deal with my situation. I now know that is a form of negative self-talk and counterproductive to any kind of emotional healing.

I struggled with whether to write this essay in first or third person. I actually wrote the first draft in third person. There is a part of me that still struggles with the valor in being honest and vulnerable about my life. It takes courage to be completely vulnerable and brave enough to disregard the stigma and judgement surrounding mental health issues. I will be sharing this essay with my children. They know some of my journey but they don’t know the extent of the details shared in this piece. Until I was able to go back, remember and write the details of this journey I never considered sharing with my children. I thought maybe it would be too traumatic or shocking for them. I also worried that they would be angry with me for keeping such important details of my life from them. I now know that’s an incorrect assumption but it held sway over me for years.

My biggest goal other than learning fail safe coping mechanisms has been to determine how I can share my journey with others and be an encouragement. OCD is inherently isolating to the person who suffers with the disorder. It is a sad reality that most people who have OCD are reluctant to share what’s going on in their head. They can be horrified by their intrusive thoughts and find it very difficult to talk about their symptoms. The shame, guilt and embarrassment are real. I often wonder how many people I know and respect are living inside their heads and their anxiety and depression are overwhelming them. I want them to know they need to take the step to share with a trusted person who can guide them to resources that can make their lives joyful and meaningful again. My counselor suggested I might consider a blog. That piqued my interest but I also found myself wondering if I could write well enough to communicate the details of my journey around the Circle in a helpful and effective manner. Hence, I wrote this essay to test that theory.

I spent considerable time deciding how this essay would be structured. I wanted to preface the piece with a brief bit of information about OCD. Honestly, I wanted to share the information at the outset because I felt it might “soften” the impact the most vulnerable parts of the story would have on the reader (i.e. if the reader had basic information about my type of OCD maybe they would be less shocked at my description of some of the symptoms. Ergo less judgmental about my character and sanity). You’ll find my information on OCD at the end of this essay.

I’m on a new trajectory now. It’s a Circle of Meaningful Living that I want to travel throughout my retirement years. It will allow me to experience a new kind of joy not burdened by false expectations but by living in the present with each day’s challenges and victories.

This information below is from the International OCD Foundation. It needs to be shared as an educational tool for all individuals who are looking for answers. You can read further at: www.iocdf.or/about-ocd

Obsessive Compulsive Disorder (OCD) is a mental health disorder that affects people of all ages and walks of life. OCD occurs when a person gets caught in a cycle of obsessions and compulsions. Obsessions are unwanted intrusive thoughts, images, or urges that trigger distressing feelings. The thoughts are so distressing because they are antithetical to the character and personality of the individual. Compulsions are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease his or her distress.
Most people have obsessive thoughts at some point in their lives but they do not have OCD. The cycle of obsessions and compulsions must become so extreme that it consumes a lot of time and severely limits the person’s ability to engage in normal activities, some even avoiding certain activities that might trigger the obsessive thoughts.
The casual use of terms like “obsessing” or “I’m obsessed” in relation to specific topics that might be a challenge in everyday life can trivialize the very real struggles that individuals with OCD suffer from.
Research indicates that OCD involves faulty communication between the brain’s frontal cortex and deeper brain structures. These brain structures use a neurotransmitter (chemical messenger) called serotonin that allows a “circuit” to be established with thought processes and how the brain transmits thoughts from the frontal cortex to the deeper structures. In OCD the brain circuit is abnormal. The circuit gets “derailed” and instead of the thought passing through to an area of the brain where it is analyzed and deemed “just a thought – okay to forget” the circuit spins and loses traction, creating a stationary pathway that deepens, becoming very difficult for the person to discard and move forward again in an active circuit.
The treatment for OCD is multifaceted. Medications (Selective Serotonin Reuptake Inhibitors), Counseling, Cognitive Behavioral Training/Exposure and Response Prevention Therapy are all tools that can be helpful in managing symptoms and decreasing the anxiety that can occur if symptoms go unchecked.
OCD is a chronic condition. There is no cure. But treatment modalities can be utilized in making the disorder manageable and individuals can live meaningful and productive lives.