by David Kedeme
I remember the day my white high top Puma sneakers my parents gifted me for Christmas became the exact opposite of the color they came boxed in. It was a post rainy day in middle school, on a mulch covered, semi grassy area we considered our soccer field with two benches representing goals. After enjoying an intense match, what I did not enjoy but assumingly brushed off was the fact of how dirty my shoes were. Fast forward to later that day, I spent hours cleaning the shoes, trying to restore them to their original look.
Something felt different than other times I cleaned.
Every speck had to be clean. The more time I spent, the more visible other “not as clean” areas of the shoes became, requiring their own dedicated time of cleaning. Slowly, this cascaded into many other aspects of life such as my bedroom and closet needing to be organized a certain way, a tornado of relentless doubts concerning my relationships, with this dark monster in my head controlling what I can do, think, and feel. It felt like an eternity but at the same time as if no time passed from when I first touched to clean those shoes to when I could not sleep in my own bedroom and instead slept downstairs due to not wanting to mess the space up and not being able to enter and exit my closet as easily, so needing to rewear clothes days on end. I thought that doing what the monster or voice or whatever it was wanted would lead me to peace, as the relief from the sky high anxiety and gloom that came from performing what I know now as compulsions came only to have what I learned were obsessions come back, if not stronger, reinforcing this vicious cycle. My parents noticed my change in behavior, from avoiding my room at most costs to being late to dinner by up to an hour or two at times. I had only vaguely heard of obsessive compulsive disorder, OCD, and brought the idea up to my parents. The landscape we were dealing with was completely new and I felt even more alone due to this in addition to the isolation the condition induces you to be in. But we began to look for therapists, where I started talk therapy, with the therapist trying their best but the therapy modality was not the right one for me. Next up was a hypnotherapist, which also did not work for me. I needed some action to be okay with the high emotion filled state I was in when the bouts came on, in other words, exposure and response prevention therapy. After doing some research, I landed upon NOCD, an OCD teletherapy and advocacy organization.
I could not believe what I was hearing through the basement, not my room, laptop screen about actually going into my room, and that was not even the worst part. I just had to open my closet, take clothes out, move items in my room, and not do anything. “Maybe it is, maybe it is not” was a phrase that my therapist told me throughout therapy. With the significant support of my family, therapist, and friends, I was able to be okay with not being okay. Exposure and response prevention therapy makes you face the monster, making you enter the state in which you experience high anxiety. The therapy makes you look the monster in the face and realize it was not that big, not talking or engaging with you, making you sit in the discomfort and not do anything you so desperately want to do. With this methodology and rigor, I was able to coexist with the beast, and slowly it shrank, still existing though. But that is okay. That happens.
OCD belongs to a category of disorders called Obsessive Compulsive and Related Disorders within the Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition, a manual that influences not only how patients receive care but also research funding and medical training. Although not officially recognized in the manual, there are many discussed subtypes of OCD depending on the obsessions and or compulsions one experiences. Some people, like me, had symptoms that ebbed and flowed in terms of severity and percolated from subtype to subtype. My symptoms throughout my experience with the condition range from having to keep most of the items in my room a certain way, doubting whether I want to be with my partner, questioning my morals, wondering whether something happened in the past pertaining to people in my life even though it did not, and more. Throughout typing this, thoughts flood my head, similar to ones I experienced, say, six years ago.
I hope to be able to perform research in the condition as well as treat people who were and are in my shoes. With up to 242 million people worldwide meeting clinical diagnostic criteria for OCD, about 40 to 60 percent experiencing treatment resistant OCD, more than two thirds of the general public not being able to accurately identify OCD, and mental health still being stigmatized today, there is more needed to be done from all fronts. When one type of online treatment is sought, about two thirds of patients achieve a clinically significant outcome, but on average, it takes greater than seven years for someone to receive a diagnosis of OCD and it can take up to seventeen years for an individual diagnosed with OCD to receive treatment. This is a multifaceted problem that requires a multifaceted approach which requires a banding of people worldwide to come together to promote awareness of the condition and a safe space for people throughout who have OCD.
Today, as I am typing this, I still am experiencing many of the symptoms I have before. The condition does not just go away, but it does become more manageable. If you are struggling, there is hope, there is a way, no matter how impossible it feels. I felt as if there was none, no light at the end of the tunnel, spending many hours crying out asking why to a source I was not even aware of, answered only by my own repetitive thoughts. But as someone who has been there, you will be okay. Even if multiple therapeutic modalities do not work, you feel like you want to give up because a current exposure seems impossible to do, you feel more anxiety at times, you feel like you are letting people down if you do not improve, you feel like the monster you were once fighting off keeps going, keep going. Seek help in many ways, rely on your community, and for those who have a hard time finding one, we are here for you, the International OCD Foundation community, and I most certainly am as well. Thank you for reading this and I am sending you hope and luck wherever you are. You are never alone.
The post Facing the Monster: My Journey Living with OCD and Finding Hope appeared first on International OCD Foundation.
