I usually write about adoption from an adoptee perspective but I wanted to write about another aspect of my life, a condition I live with called Obsessive Compulsive Disorder. Generally, when people speak about Obsessive Compulsive Disorder (OCD) it is referenced in terms of jokes or flippant comments such as being a little over the top with cleanliness or having their possessions in some form of orderliness. A search on Google of OCD memes, reveals a litany of these stereotypical jokes. I frequently see Facebook posts from friends with these kinds of memes and I want to scream out at them because there is nothing funny about OCD.
OCD Is Not Endearing Or Funny
Each time I see OCD represented in this way it really pulls at my heart because I am a closeted OCD survivor. I am embarrassed because it seems that this disorder is so misunderstood by many. Even now my brain is screaming at me to not publish this personal piece because of the stigma of mental illness and moreover because I live with a condition that society thinks is okay to make fun of and joke about. Because of this, to date, only those in my intimate circle know that I live with the devastating, tortuous and destructive impact of this condition. Whilst I recognize that having a sense of humor is important, living with this has not been a barrel of laughs. Here are some reasons why:
My House Is Not Orderly
I will now crush one OCD stereotype; my house is not excessively clean or orderly. Our home is far from being pristine and I can generally live with that okay. Except when it comes to sheet sets. I cannot begin to explain what happens to me if a non-matching pillowslip is put on the bed. My OCD feeds into my anxiety disorder and the two interact in this situation and for the onlooker it seems incredibly odd behavior. My heart will race, I will experience severe anxiety and I will turn the house upside-down to find the matching pillowcase. When this situation occurs, I cannot think of anything else except that I have to find the matching pillowcase and the bed must be put right. However, this pales in comparison to the other aspects of OCD that I live with. You see OCD comes in many forms and I happen to experience a few of them.
The Many Faces Of OCD
There have been times throughout my life where I would wake up during the night, heart palpitating, convinced that I had killed someone the day before. Now many of you don’t know me personally but if you did you would understand how inconceivable that is. However, when OCD hijacks my brain it becomes terrifyingly real. I have to date been able to manage these particular intrusive thoughts but it has meant that on occasion I have laid awake in bed tracing every step of my day as a form of reassurance. I am aware that reassurance seeking behavior can reinforce my OCD so I have to be careful.
Likewise, there have been periods of my life where I have become convinced that my husband and I were going to be killed in a car accident. This meant that if my husband was late home, even by five minutes, I would go into a panic attack and I would vividly see him dying in the car. However, this too comes and goes but this is nothing compared to what I call my primary OCD.
My Experience Of OCD Was Debilitating
In 2011 I become convinced that I had cancer of the throat. Just typing it here cannot adequately capture the absolute terror I lived with and how debilitating it became. I would go to my doctor repeatedly in a state of terror and despite getting a range of invasive tests, I was assured that I did not have cancer. However, I would check my throat repeatedly every day throughout the day and I kept going back to my doctor. It became so bad and incapacitating, that I could barely function. I couldn’t work, I was experiencing rolling panic attacks and I could not sleep. My mind constantly bombarded me with these intrusive cancer thoughts which were accompanied by vivid images of me dying. I couldn’t escape them. My brain told me that the doctors were wrong, they had made a mistake and I was most definitely dying. Every time I checked my throat I would see something different which reinforced that I indeed had cancer. I constantly sought reassurance and my checking behavior increased and I was in a vicious cycle.
If that wasn’t bad enough I started experiencing other strange and frightening symptoms whereby it felt like my tongue was swollen and didn’t fit in my mouth properly, I had to think about each time I swallowed saliva and I could feel my throat constricting, and every time I breathed I was in pain.
I resigned from work, and I had to go on a small disability pension, my career, my life and dignity were in shatters. My husband had to take sporadic time off work and he had to live with my increasingly precarious well-being. I did not want to live like that! I have a fear of death but I lived with daily morbid thoughts and alarmingly in the end death seemed liked peace. Does this sound like fun to you? All the while, I kept most of this a secret from a lot of people.
Incidentally, I was finally referred to an ear nose and throat specialist, who found a cyst on my vocal chord. This had to be removed via a complicated operation and tested for cancer (but it was thankfully found to be benign). This diagnosis and continued focus on my throat was not great for my OCD given that it reinforced the nature of my disturbing thoughts and fears. However, it does serve as a reminder to doctors that whilst OCD drove my constant need for medical reassurance and testing, people with this disorder also have real health issues that can’t be dismissed or solely attributed to the disorder. My case in point.
How I Now Manage My OCD
I now manage my OCD but it was a complex pathway. I reluctantly agreed to go on medication which has tempered the main symptoms (but not eradicated them completely). Whilst I remain ambivalent about antidepressants the medication was indeed helping however I still felt terrified that I would relapse and I was essentially told that I would need to be on these for life. I felt bereft and helpless until I saw a TV show which featured American Psychiatrist Dr Jeffrey Schwartz. This was a defining moment for me and I went on to buy his book You Are Not Your Brain. He explained it so succinctly and my condition started to make sense to me for the first time and the mere fact that I had some control in how I responded to it was a truly poignant time in my life.
I also discovered a wonderful psychologist who specializes in Acceptance and Commitment Therapy (ACT). ACT has also been instrumental in my wellness and accordingly I read ‘The Happiness Trap’ and I practice the mindfulness meditations that come with the book at therapy and at home (although not as much as I could at home). I keep my books close by and I live in hope that as each day passes, and as Dr. Jeffrey Schwartz explains, that my brain is rewiring and as Leonardo DiCaprio can attest to (but in a positive way).