Full Circle – My Journey
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 the cause of my symptoms. 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 stunned when I thought looking at a corpse at the funeral home, I was glad this person had died? Were the seeds of guilt and shame planted then? Do I start when as a preteen I received a transistor radio as a reward for earning good grades yet felt vaguely anxious because of the nagging feeling I didn’t deserve the reward? Do I start with recalling the trigger leading to my first psychiatric hospitalization at age thirteen? The horrible intrusive thought I could magically, in my sleep, cause harm to my parents? I struggled alone for days trying to repress the obsessions. I couldn’t eat, sleep, or attend school. Anxiety threatened to swallow me whole. I acted on a compulsion when I told my mother about the horrible turn of events. I hoped the conversation would be like a confession and relief like absolution would be the outcome. Mom would know I didn’t mean those thoughts because she knew who I was. Most importantly, by talking to her I would experience relief, the thoughts never to return. Tearfully, and with crushing dread and embarrassment I described to her the fear and confusion engulfing me. I felt like a small child, a thirteen- year- old sitting on her mother’s lap requesting the comfort of her arms enveloped around me. I plunged ahead describing the confusing and frightening experience. She was horrified. I had told her something so shocking she found herself with no resources in reserve to address my situation. She decided 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 experience. The evening the physician came to my bedside and told me all the tests came back normal led to a question which still evokes pain. “Are you saying these things to hurt your parents?” I looked directly in his eyes and shouted, “NO!”. My tears came in torrents. Guilt and shame engulfed me. The doctor explained he did not have training or expertise to treat me. I would need to be transferred to the psychiatric unit of a university hospital where psychiatrists would talk to me and reevaluate.
University hospitalization began a forty-two- year odyssey. Intermittent exacerbations of the obsessions and compulsions culminated in repeat hospitalizations. With no definitive diagnosis, the stress grew between my parents and myself. Painful discussions were endured with psychiatrists, between the three of us. Understandably their frustration grew. Hospitalizations cost money they did not have. I couldn’t fix my condition. Doctors were grasping at theoretical straws which pierced my self- image and cratered my self- esteem.
Doctors tested other theories 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 creating tense relationships with extended family? No. The theory which broke my heart and was patently untrue was the hypothesis my dad had abused me, and I was acting out. Indescribable guilt cut me to my core. Dad died at 89 years old two weeks ago and never initiated any conversation about this dark episode. I still recoil with almost visceral pain when I imagine the pain he must have encountered. Years later I was able to approach him and let him know OCD was responsible for turmoil encountered in those painful years. 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 calm countenance giving me hope he believed me.
I repeatedly asked myself why the doctors couldn’t 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 in the back seat and overheard my mother lament to dad how sad my situation was and how could they deal with something so serious?
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 knew with nauseating clarity my symptoms weren’t going to go away. I was destined to miss much of my peer’s social experiences and would imagine myself saying to them, “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. Even at thirteen I had a strong religious faith which was tested when thoughts would enter my mind. Maybe I didn’t know God, or I had been abandoned by God, or I hated God because of my circumstances. I shared those feelings with one of the nurses who wisely and compassionately counseled me. I can still see her dark brown eyes and hear her soft, calming voice. She spoke with a Latina accent and her words were like a balm to me, “God loves you so much. He knows about you and your circumstances. You can be assured none of those thoughts will change God’s love for you.” I will admit there were times I would cry out in prayer and plead with God to heal me, remove the pain I experienced. My plea was not answered in the way I anticipated but I would hold on to the nurse’s counsel for the duration of my journey and I ultimately grow into a mature faith. In retrospect I was never abandoned by God, instead strengthened, and given a pathway of purpose including a nursing career with countless opportunities to repay others the care and compassion shown me.
There were brighter periods in between hospitalizations. OCD cycles 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. Recurrence would cause so much anxiety and depression I would need to be hospitalized again. I did not have the coping skills to manage at home. During those repeat hospitalizations, doctors still scratched their heads at my puzzling presentation. They heard me try to articulate my obsessive thoughts. Their solution was to try psychotropic drugs meant for other psychiatric disorders. They didn’t work, clouded my head, and made me so sleepy I could not function. Why did the doctors not recognize my history of intrusive thoughts and compulsions as hallmarks of OCD? How could they not recognize the symptoms causing me such anguish were antithetical to who I was as a person? I don’t know. As I have pondered this question over the years. I have experienced a range of emotions. Anger, frustration, sadness, and regret are chief among them. I have had to tell myself these events occurred in the mid 1970’s. Symptoms of OCD were not widely recognized to present in the way I presented as their patient.
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 making him irresistible. I felt like I could feel safe sharing an 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 leading me to a diagnosis. I had two or three brief counseling sessions with other counselors allowing 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 sounded like I had Obsessive Compulsive Disorder. Finally, a name and a diagnosis. Educational materials he provided opened channels of knowledge. Understanding began to flow with streams of insight and information. He recommended a medication he thought would help my anxiety and obsessive thoughts. The medication did help and made life easier. It did not completely remove my symptoms. I thought my symptoms could be eradicated and I would be cured of OCD.
I practiced nursing for 39 years and I believe my profession has allowed me easier access to research, resources, and avenues of treatment. I developed an honest and therapeutic relationship with my primary care provider. I could talk about my OCD and describe different levels of depression I experienced. My provider was nonjudgmental and, most importantly, provided options for medication changes and further counseling.
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 be comfortable when talking to my provider. I had a tiny circle of friends who knew I had OCD. To be able to tell others about my diagnosis was, in a way, liberating. I was discovering years of uncertainty and suffering had made me strong in ways I could not have anticipated. I recognized in me a growing compassion for others. I could listen to the hard things people shared and not be offended or shocked 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 my thoughts were mostly centered on immediate real time concerns with only the rare glimpse of intrusive thoughts seemed to intrude my consciousness but did not hang around. I have since learned activity and intellectual diversion can help diffuse the cycle of thoughts. It’s a component of Cognitive Behavioral Therapy. When the daily work grind ceased there were triggers reminding 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 allowing 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 many details of my struggles. After all, at some level I still believed (although inaccurately) there was a part of him who considered me crazy. I asked him to accompany me to an office visit with my provider where I laid out my intent to dig in and find lasting solutions to manage my OCD. I shared there were many times over the course of my life, I had missed many opportunities to ravel and serve others, experience new and exciting things. Moving out of my comfort area and away from home triggered symptoms. My revelation struck a chord with my husband. I began to let him see some of the scars marring my aspirations. I got a counseling referral to a provider having significant experience with OCD patients. This was big.
My counselor has worked with me for nine months and I have made significant strides learning to live with OCD. Cognitive Behavioral Therapy, specifically ACT therapy (Acknowledge, Commit Therapy) is proving to be quite helpful will remain a mainstay in my coping arsenal. Hands down the most difficult aspect of my counseling has been accepting I will not be cured of OCD. Medications and treatment tools will help manage symptoms and allow me to move forward with a full and meaningful life. My counselor asked me to consider journaling my experiences. I began to record my memories. I discovered I had repressed many of them. I always thought extended family and friends gossiped about my situation, made unfair assumptions, not the least of which was unfairly judging my parent’s ability to deal with our circumstances. I now recognize this as a form of negative self-talk and counterproductive to any kind of emotional healing.
I struggled whether to write this essay in first or third person. I wrote the first draft in third person. There is a part of me who still struggles with the valor of honesty and vulnerability which can bring closure to difficult life experiences. 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 they would be angry with me for keeping such important details of my life from them. I now know I was incorrect in my assumption. 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 most people who have OCD are reluctant to share the conflict going on in their heads. Horrified by their intrusive thoughts they can be hesitant to talk about their symptoms. The shame, guilt and embarrassment are real. How many people I know, and respect are living inside their heads and anxiety and depression overwhelm them. I want them to know they need to take the step to share with a trusted person who can guide them to resources which can make their lives joyful and meaningful again. My counselor suggested I might consider a blog. My interest was piqued. I found myself questioning 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 the 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 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 affecting 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 triggering 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 it consumes a lot of time and severely limits the person’s ability to engage in normal activities, some even avoiding certain activities which might trigger the obsessive thoughts.
- The casual use of terms like “obsessing” or “I’m obsessed” in relation to specific challenges in life can trivialize the real struggles individuals with OCD suffer from.
- Research indicates OCD involves faulty communication between the brain’s frontal cortex and deeper brain structures. These brain structures use a neurotransmitter (chemical messenger) called serotonin allowing a “circuit” to be established with thought processes brain transmission 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 “only a thought – okay to forget” the circuit spins and loses traction, creating a stationary, deepening pathway, making it difficult for the person to discard the thought and move forward 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 helpful tools 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.