I would urge anyone that has identified with anything I’ve spoken about to seek advice and talk to someone.
MY OCD STORY
I’ll set the scene. I’m sat here in bed, slightly intoxicated, listening to Celine Dion. I’ve just read my best friend Joe’s ‘coming out’ story. Scrolling through – there is a section about his mental health and suffering with OCD. I knew that he’d had OCD when he was younger as we’ve discussed it before – we’ve joked about what our symptoms and triggers were. In his story, Joe describes OCD as a mental health disorder. I have never considered my OCD as a mental health issue because I was so young when I had it and it was never referred to in that way around me. During a time when mental health is being discussed much more openly, I feel like sharing my OCD symptoms and triggers may help other people that have also found themselves involved in it.
DISCLAIMER – WHAT YOU ARE ABOUT TO READ IS COMPLETELY TRUE, HOWEVER UNTRUE IT MAY SOUND. THESE WERE REAL EXPERIENCES AND ACTUAL THOUGHTS THAT HAPPENED IN MY ACTUAL HEAD.
I don’t remember the exact age when my compulsions started but I remember it being at the end of junior school and the beginning of high school (around 10-11 years of age). I have always been terrified of being burgled. I’ve spent a lot of time trying to think back to where that fear has come from but it’s a struggle to pin point a particular event that may have triggered it. I remember watching the Danny Boyle film ‘Million’ which features a scene where a burglar comes through an attic hatch into a boys bedroom. This could very well have been the start, but I can’t blame Danny for the whole thing, I’m sure there was more to it. We also had our garage broken into a couple of times, which scared me witless, but never our house. I think the fact that it had never happened made me even more scared that it was still to come.
I am learning to trust I have the ability to deal with the worries and ‘what if’s’ if they became true.
I have OCD. Contamination OCD.
It has taken me many years to write those words without feeling crippling shame or performing a humorous apology. I have embraced the fear and vulnerability and I have found strength and power.
Today I feel healthy: managing my thoughts and doing the work to succeed in recovery. I have dug deep and swam into the dark pockets of my psyche to understand the reasons my OCD manifested. I know the theory of how to heal, so, emotionally I continue to carve a new path of newly created thought patterns. Patterns of understanding and truth and self-care. Patterns that will serve the self of today not the lost and fragile girl of the past.
Trauma and grief I believe are the cause of this dance with OCD.
I have not had any more or any less of these two emotions or experiences than the next person. I have experienced things in my life however that caused me pain and I did not know where to put the hurt that these moments created so I suffocated my grief and my shock and it became fear.
People are fragile and they break. Hearts can hold so much but there needs to be an outlet and everyone’s outlet is different and specific to them. OCD became my friend and my enemy. My protector and my abuser.
My OCD was born with the sudden death of my beloved mother.
It was fed and nurtured by a stint in a U.S jail and a horrific deportation experience, reckless drunken behaviour, leading to regret, guilt, doubt and shame and the need for there to be consequences. My OCD, in part, caused the shocking breakdown of my marriage and took nourishment from it.
My name is Skyler. And I have had OCD as long as I can remember.
My dad was the first person to start calling me “OCD”. Before I even knew what it meant. With some of my compulsions being obvious to him since I was little. Such as: making sure closet doors are closed all the way, excessive and often aggressive eye blinking, excessive stretching and contorting of my limbs. Particularly my arms and wrists. Picking up pieces of paper or trash off of the carpet, repeatedly touching things or checking things, making sure adjacent objects are flush with each other, (books, dvds, cd’s, toys, cards) flipping light switches on and off and looking at the clock every 30 seconds.
Most of my compulsions I had as a child, come and go. Or have faded in intensity over time.
The only compulsions that have become more severe with age have been the stretching and especially the blinking… which causes me daily headaches and eye pain.
Now onto the real problem…. the obsessions.
As a child, my obsessions were the smaller half of my OCD. With my compulsions being in the spotlight..
But as I entered adulthood, my obsessions began to increase in severity, complexity and frequency. Until arriving at a point where they rule my life from the moment I open my eyes.
It was an everyday struggle. It still is.
11 years old. 5th grade. That’s when it all started:
I would wake up at 5:50 on the nose. Not a minute before, not a minute after. I’d dash into the kitchen and begin making a pot of coffee for my mother. I would prepare everything the night before– the filter already filled with fresh coffee grounds, the water container already filled to the line, the spoon perfectly aligned on a fresh napkin. While waiting for the coffee to brew, I would prepare and eat my breakfast. When the coffee was finished, I’d pour it into a cup and place it to the right of my mother’s “spot” at the kitchen table, with the handle perfectly aligned to the right. By 6:05, I HAD to be finished in the kitchen and on my way to my next morning task. I’d get dressed, brush my teeth, make my bed, curl the tips of my hair, and run to the living room to start my next morning ritual. At exactly 6:30, I would turn on the television and watch QVC (the home shopping network). The show was so structured, which was appealing to me. I was fascinated as to how they could talk about one single item for an hour straight, without it seeming too repetitive or mundane. The show brought me an odd sense of comfort, which is why I let it into my life every single day. At 7:20, I would grab my backpack, head to the car, and mentally prepare myself for a day of school.
To start my day in the classroom, my pencil would be placed horizontally on the top of my desk, my composition book to the left, both perfectly aligned, of course. I sat next to the same girl all year long. She was eccentric—in both her personality and disposition. I respected her, but she was a complete mess and it drove me nuts. She’d spread her things all over her desk, would leave a mess, and fidget and chew on things. I was constantly reaching over and organizing her desk for her. Surprisingly, she never said a word. Although we were opposites, she understood me, and I understood her. We were “different”.
I am learning that I CAN have thoughts I CAN have emotions…
My Story…So far! I think back to when I was a pre teen & there is so much happening, not only physically but also mentally… This is when I first recall OCD happening to me. I was around 12 years old & I began to count & touch doors, handles, count my steps, turn off the T.V. at the “right time”. I had no idea what was happening, it all seemed innocent to me back then just a little quirk I had, I just wanted to get that “right feeling”, no big deal. As I got older and into my later teen years I will never forget this feeling… ever. I woke up one sunny morning & it was like I was HIT by a Bus (Which I actually was years later, lol!!). I had this feeling of anxiety/sweating/tightness in my whole body…All from one single THOUGHT…Am I homosexual because I did that “thing”???? Prior to this thought I had never been attracted to the same sex… Ever. It was just a thought in my head, that’s all… But for some reason it would not leave me.. It hung around for months on end, every waking minute it was there, I would try & resolve it by looking at men out in public to “check” & see if I was attracted to the same sex but that just made matters worse, I would sit and look at magazines with pictures of Men to see if I was attracted to them… It was all so confusing & scary & stressful.. before this thought my life was just going along fine, usual life stuff. How could a single thought turn my life upside down for months??? I look back now to that morning of “the thought” and with all my OCD experience and think… I was Truly living in my head… I was nowhere to be seen, just a shell of my former self, walking around the planet earth trying to find an answer out of this nightmare, only to go deeper down the “Rabbit Hole”!! The more I tried to scratch my way out of the hole the deeper I fell, every time I reacted to these thoughts & try and make sense of it all my Brain would throw another one at me.. Hey Scott what about this one?? I would try & figure that one out only to lead me onto another thought & completely forget about the first thought that popped into my head! Eventually this obsession left me, how I can’t recall? There was a brief period where I thought I was back to the old me… But I still had those underlying “quirks” of touching, counting & turning off the TV at the right time, no idea that I was keeping the OCD Beast alive in me for bigger & better things to pounce on & make my life hell again. Around 23 yrs old I went globe trotting for around 2 years, my OCD was still there unbeknownst to me, I just continued on with my “Quirks” of touching, counting, etc while I was working & traveling the World and the OCD booger not really bothering me much…. I found myself living in London England for a while with some friends, I had a job as a Gardener. It was a fun job UNTIL one day I was cleaning out a commercial garden & came across a Hypodermic Syringe… I didn’t really think much of it at the time until about 2 years later when I was working as a Gardener again back in my Homeland of Australia… Working away one Sunny morning, cleaning out a garden bed I was pricked by something prickly, usual gardening, it happens almost daily… Then all of a sudden my Brain throws up a thought…WHAT IF IT WAS A NEEDLE AND I CATCH AIDS!!!!! In an instant my Brain was going crazy with “what if’s”… Down the “Rabbit Hole” I went again, trying to scratch & kick my way out of this one…Only to find myself deeper down that Hole once more..! This Obsession has been my Nemesis over the years coming & going for the last 15 years of my life, when I was first triggered back on that Sunny morning while Gardening I began on a path of Checking, Coping, Controlling. Having HIV Blood tests A LOT over the years, I have lost count! I have to say it’s been at least 6 years since my last test, I am still alive believe it or not!!
One way is recovery and the other is OCD. It is awesome to have that choice!
Growing up I used to worry a lot. About everything. I never told anyone though. I’m not sure if this was because I thought ‘If I don’t say it its not real’. Or maybe I didn’t want to seem weak? Or perhaps I didn’t want people to worry themselves? Probably all of those. It does not matter too much now. The fact is I had a load of anxiety taking a ride on never ending waltzers in my belly and, despite having a wonderfully supportive family, I never felt comfortable vocalising its existence.
So where does this anxiety go? How is the pressure relieved? Unfortunately the natural mistake any child, teenager or adult can make is to try to work that feeling out. To try to think themselves out of that feeling. It can work briefly. But if that anxiety pot is always on the verge of brimming you have to keep thinking of more ways to reassure yourself that everything is going to be okay. Throw a frightful “intrusive thought” into the mix and its not too much of a jump to see what can happen next. The individual starts to dedicate their whole lives to convincing themselves that thought was not real. But the issue is the anxiety made it FEEL real. And so the cycle continues. OCD is born.
I remember in my early 20s I used to say to myself “I will NOT have that thought today” and manage about 5 minutes at best. That track got stuck more than the NOW 54 CD that I used to use as a tea coaster and frisbee. And was even shitter. I was so desperate to have a ‘pure’ brain without ugly thoughts. But anything from a pair of scissors to a dark BBC News story would be enough to set me off into dreadful doubt and reflection. Of course all of this reassurance, coping and avoidance made things much worse. I had got to the point of planning how to ‘hand myself in’ (for crimes against the thinking world I suppose) and researching online to see if I had the same brain as the Moors Murderers. All was not well.
Then, whilst training for a new healthcare role at the age of 24, a little miracle happened. The woman taking the group mentioned “some people with OCD have repeated unwanted thoughts about hurting people”. I sat bolt upright. Straight after I raced home and jumped on Wikipedia and started reading about OCD, intrusive thoughts and compulsions. The relief I felt that day is still something I marvel at fondly. That there could be a reason for all this confusion and fear felt something close to being reborn.
A lot can happen in an hour, so I focus on minutes and good moments.
I woke up one morning after getting my wisdom teeth pulled, bombarded by an inordinate amount of UNWANTED OBSESSIVE INTRUSIVE THOUGHTS that I found myself incapable of ridding. We all have thoughts, but these thoughts were like none other I had ever had before. Racing through my mind feeling as though someone had lit the tip of my brainstem on fire….I was debilitated. Suddenly I was checking if the stove was off, flicking light switches up down up down up down, blinking a certain number of times until “it felt right,” tapping my fingers into numbers into counting….repeating sentences…..what happened to my mind? I didn’t know why nothing filtered out. I didn’t know why I could not let these thoughts go. I didn’t know how I was going to successfully enter my first year of college at UCSB with such bizarre obsessive worries. I was concerned about absurd topics like whether or not urine was sterile. I wanted to know that semen was not air-borne. I wanted to make sure my zipper was properly up or else something bad might happen to a family member.
August 2002, my sense of homeostasis was taken from me.
After 7 months of living in clandestine and being tormented by my own mind, I finally saw a psychiatrist who explained to me that I had a very severe on-set of Obsessive Compulsive Disorder. How could my brain drastically change over night I thought? Also, from the stigma that I heard regarding OCD, it was a disorder of hand washing and cleaning. I didn’t do either, so how could OCD be my diagnosis I thought?
As an OCD sufferer myself, it’s only really gotten to this point of overly obsessive and compulsive behaviour in the past two years. I realised it was OCD last year, after constantly beating myself up about being obsessed with embarrassing things. I experienced very mild OCD when young, with “do this or that would happen”, but it faded and I never really took notice. It’s only when it took the form of disturbing and distressing thoughts did I realise something wasn’t right. Even though the thoughts didn’t instigate any compulsions at first, the compulsions eventually became a way of relieving the distress brought on by these thoughts. And as you know I’m sure, as soon as I thought I was over something, the OCD has already jumped to another part of my life. For one period I didn’t want to sit on the tube, the next period I couldn’t get out of bed because I couldn’t rid a thought. Often the thoughts are hard to shake because they make me doubt my beliefs. Which is the hardest part to overcome.
Over the past 2 weeks I discovered The OCD stories on the podcast app, and it’s changed my life. I can’t even list the positive messages here as there are so many. The guests who share their experiences – from onset to recovery – really have brought this way of life into perspective. For some time now, to get my mind away from thoughts and compulsions I have written poems at times that my mind would usually wander (the underground, buses, a queue etc). They’re really true to what I go through, and now I know what many OCD sufferers go through as well. Sometimes there’s a light, and then there’s a slump. But it’s all about focusing on long term recovery. While small steps to start with are hard, the most powerful thing is to know that beneath all the OCD malarkey I know who I am and what I believe in. It’s then up to me to use that power and stop the compulsions.
But with the right help and support I know I can get better.
I was always been a different child, I obsessed over a lot of things that other kids wouldn’t. I believed that if I didn’t pray a certain amount of times, someone I loved would die. This was scary to deal with at such a young age. I would obsess over things and get worked up about things. Eventually my OCD grew, it manifested itself into everything in my life. As I started high school my OCD got unbearable. It took up my life I couldn’t function normally, I couldn’t even walk into a room without my mind telling me “don’t go in that room or someone will get hurt”. Things that I used to love became meaningless, I didn’t find joy from anything anymore.
I started going to therapy and soon started CBT. It was hard at first to open up to someone and let them know about my thoughts. I struggle with intrusive thoughts, these thoughts are so real to me sometimes I can’t tell what’s real and what’s in my mind. These thoughts revolve around harming people I love. I believed that once I had this thought it would come true. This is so scary for me because I take responsibility for everything. I started self harming because I felt worthless, like I needed to punish myself for being a bad person. I got sent away to a psychiatric hospital when I was 14, this was so scary. I didn’t like it at all, I felt alone and my self harm got worse after being in hospital. I ended up being discharged from hospital as they believed it wasn’t the right environment for me.
I continue to look for an edge, not a cure, for dealing with OCD.
I can recall doing drills in after school soccer practice during elementary school. During this time period, it was common for kids to wear tee shirts with college logos and names printed on them. My mind became engrossed with the number of syllables of each school. Over and over I would say these names to count and recount the number of syllables in each school. Schools with a particular even number of syllables were grouped together and labeled as good or acceptable. My mind seemed to thrive on this type of counting activity. Around this same time frame, I can remember being transfixed by the alphabet which hung over the chalk board in the front of my grade school class. Almost endlessly, I would look at the letters and make patterns and count the number of consonants between vowels. My mind did not know how to shift gears, I would fixate on my mental gymnastics and frequently not pay attention to other more appropriate class room activities. As I understand OCD, onset is usually in the late teens and early twenties. There is usually a lag between first engaging in repetitive mental gymnastics and having overt symptoms severe enough to qualify as full blown OCD. This time period can be considered the prodrome phase. I often wonder if proper early intervention would have prevented the continually spinning wheels of OCD I came to endure in later years.
Other events during this period of life seemed to help shape the form my OCD would take in future years. I recollect rifle shooting out in the desert near our home. I enjoyed shooting tin cans and bottles with a 22 caliber rifle. My aim was often true and I found the activity exhilarating. One Saturday, a small propeller plane flew over the area where we were target shooting. With a quick thought I wondered if I could hit the plane and bring it down. On one hand, it was a moving target and would be a challenging feat. On the other hand, I was morally revolted by how I could use a vehicle transporting humans for target practice. Was I lacking a conscious? The thought provoked extreme anxiety. How could I think of such a gruesome thing? What was wrong with me? I must be the most heinous person alive. In my religious upbringing, thoughts were nearly as important as actions.For as he thinketh in his heart, so is he” – Proverbs. I really believed these teachings. Somehow I had become an irredeemable murderer. In later years, I would learn about the cognitive distortion of thought/action fusion but as a 12 year old I lacked this understanding. Murder was unforgivable. No need in asking for forgiveness. I was a lost soul. Many times I tried to push this thought away and force it from my mind. Yet, the more I engaged in thought suppression the worse my anxiety became.