- Alegra Kastens is an OCD sufferer, and Marriage and Family Therapist trainee based in Los Angeles.
- Misunderstanding OCD is often not malicious, but it does carry real consequences. In order to move forward, we need to educate the general public on the reality of the condition.
- You can keep up with Alegra on Instagram at: @obsessivelyeverafter
I’m in a Lyft on the way to my hotel in Colorado for The OCD Gamechangers event. My driver asks why I’m in Denver and I tell him. “Do you have to have OCD to attend?” he says. “No, but I do and I’m very excited about the event. My boss is speaking at it,” I say. His response is not surprising, but still takes me aback: “Wouldn’t it be funny if all of the people who have OCD started rearranging the furniture, so the event never actually started?” he says. I’m the first to educate and advocate, but it was 4:30 am and I could not find words. Now, I’m full of them.
There are misconceptions about many illnesses, but OCD seems to be one of the most misunderstood of them all. On the surface, one might ask why this is such a big deal. If people make jokes about OCD being a love of organization or cleanliness, what does that do? I’ll tell you.
It deters people suffering from accessing proper treatment and understanding what is going on in their mind. It deters people like me from realizing that they are experiencing obsessions (intrusive thoughts, images, sensations, urges) and compulsions of OCD. It contributes to the length of time it takes for people to access treatment: often 10-14 years. It contributes to the high suicide rate with OCD. I can’t deny myself that the thought crossed my mind. I knew two things for sure: I hated my thoughts and I was not going to live with them for the rest of my life. Something had to change.
OCD is not funny. It’s a torturous, debilitating illness that changed my life in a split second. It took my mind from me in an instant; one sunny afternoon while I was working at a boutique. It took my identity from me, one that I had known for almost 20 years. It took the breath out of my lungs every morning when I woke up…every day when I did anything at all. It preyed on what I love most and made me believe that I was a monster. No, I did not rearrange furniture because I like cleanliness and perfection. That’s not OCD. I had sexually intrusive thoughts, images, and sensations about kids, animals, friends, and most people I came in contact with. That is OCD.
It was not funny when I had my first intrusive thought that turned into an obsession. It was not funny when they wouldn’t go away, but got worse and worse by the second. It was not funny when I started feeling sensations that made me think I was the content of my thoughts. It was not funny when I couldn’t sleep at night for fear that I would dream about the images in my head. It was not funny the night I did dream them, and woke up in the morning and said “I am going to tell my parents I’m schizophrenic.” It was not funny when I didn’t tell them, or a doctor, and continued to suffer in silence with no idea that I was experiencing OCD.
It was not funny when I could not read my textbooks or attend class. It was not funny when I saw naked images of children in my head and had intrusive thoughts about having sex with a dog. It was not funny when I wanted to get rid of my new dog, my absolute baby, because of these thoughts. It was not funny when I could not wear certain colors or look at certain things or go certain places because I was terrified of being triggered.
It was not funny when I thought that having sex (for the first time) could change my hormones and maybe give me relief from my OCD. It was not funny when I was taken advantage of by that man and that first time changed the course of my relationship to sex (thank you, OCD). It was not funny when I thought nobody would want to date or marry me because of my thoughts. It was not funny when I thought that I’d rather have cancer than my OCD because at least I would not have the brain that I did. It was not funny when I wanted a lobotomy. It was not funny when I thought about suicide, not because I wanted to die but because it was my escape from mental torture.
It was not funny when I watched a mom speak yesterday who lost her son to OCD. It was not funny when I saw a mom crying because her middle-school daughter was experiencing torturous OCD that kids her age did not understand.
I could go on and on and on, but I’m hoping you get the point. OCD is not funny. It’s not quirky. It’s not a cute personality trait involving a love for organization and cleanliness, as is often portrayed in the media. It is egodystonic: OPPOSITE to your values and what you believe. It involves Obsessions (fears) and Compulsions (physical or mental attempts to get rid of the anxiety) that only increase the Distress. If you like your thoughts or your behavior (organizing, rearranging, etc.), it is not OCD.
OCD is debilitating. It is exhausting. It holds you captive. It steals your identity and what you love most. It kicks you to the ground and beats you some more while you’re down there. It’s the hardest thing I have ever been through.
OCD has such a high suicide rate. It has been ranked by the World Health Organization as the top 10 most debilitating disorders (physical or mental) of them all. It’s not funny and it’s not what the media portrays it to be. The only way to change this narrative is to speak up and be the change, which is what I am hoping to do. OCD is not an adjective and you should never be using it as one. Every time you do, you increase the possibility of someone suffering in the way I did (and in the way so many people do) from not accessing proper care by clinicians who understand. This narrative has to stop. Lives are at risk.
Alegra Kastens is a Marriage & Family Therapist Trainee based out of Los Angeles, California. She is in her last semester of her Master’s program in Clinical Psychology at Pepperdine University. Alegra has trained in Cognitive Behavioral Therapy, with an emphasis on Exposure & Response Prevention, at the UCLA Adult OCD Intensive Outpatient Program. Additionally, she is completing a traineeship at The Maple Counseling Center. Alegra is training to specialize in the treatment of Obsessive Compulsive Disorder and is passionate about advocating and educating within and for the community.