This will be the first in a series about my journey with OCD. I’m taking this on for two main reasons. First, although the stigma is slowly diminishing, it takes more openness to help the erosion. Second, as I’ve become more attuned to it, I’ve heard someone refer to themselves as “so OCD” three times in the past week! It’s up to people like me to clear up misconceptions about a condition affecting a whopping 1% of the population.

My gift to myself for Mental Health Awareness Month:

I had a regularly scheduled physical last week so I thought, why not finally get screened for OCD? I’ve been certain since my obvious bout of post-partum OCD that I have it (more about my post-partum OCD in an upcoming post.) Long story short, my doctor said something to the effect of, “Usually, self-diagnosis isn’t accurate. But I know you’re a highly intelligent, introspective, and well-informed person. You are totally correct in that YOU HAVE OCD.” Let me tell you, I almost skipped out of that clinic like a school girl. I feel so validated, because I’ve known it all along. I am also looking forward to starting behavioral therapy in the upcoming weeks.

At the same time, I’m so overwhelmed. The enormity of my official diagnosis hit me like a ton of bricks at around 2 am the other night, and I didn’t sleep for hours. Why?

1. The more I reflect, in retrospect, I realize that many of my behaviors/mentalities since childhood were due to OCD. Is who I am irrevocably intertwined with the disorder?

2. There is much of my compulsive behavior that I would be happy to let go of (like counting, repeated checking, etc.) There are others (like list making, asking questions to seek reassurance) that I don’t want to give up because they appease my obsessive thoughts.

3. Things that people admire in me, like organization, reliability, being so “on top of things,” being likable and tactful. Are those actually just parts of a flawed mental state?

4. Things that I’ve done to be a jerk, like flaking out on people, being a hermit, etc., are those due to OCD or just me?

5. Johns Hopkins researchers recently found genetic markers linked to OCD in a GWAS study. I’m really scared my kids might have it, and I think I might see tendencies in my daughter already.

What is OCD?

-It’s a mental disorder characterized by disturbing thoughts and images (obsessions), and repetitive actions or thoughts (compulsions) performed to neutralize or make the obsessive thoughts disappear. These compulsions only serve their purpose temporarily, and must be repeated in a vicious cycle.

-The content, if you will, of obsessions and compulsions can vary widely, from the stereotypical incessant hand washing, to checking, counting, seeking reassurance, and more.

-Being a neat freak, or super particular about something does not, I repeat DOES NOT make one, “so OCD.” For example, it’s inaccurate to say something like, “I’m super OCD about making my bed. It totally has to be perfect.”

-People with OCD are greatly distressed by their obsessions, and do not enjoy performing their compulsions.

-OCD symptoms can wax and wane throughout one’s lifetime, and can often be triggered by stressful events.

What is this GWAS you speak of?

Because genetic literacy is so important, here is a very abridged explanation. A GWAS (Genome Wide Association Study) is a relatively new approach to finding genetic markers correlated with disease. Researchers examine 500,000 to a million SNPs across a large sample size of individuals with a given disease compared to a control group to find markers more common in the disease group than the control. SNPs are individual locations across a genome where nucleotide variations can occur (more than 99% of all humans’ genomes are the same!) A genome is comprised by the entirety of DNA contained within the chromosomes of an organism. Importantly, SNPs found to be significant in a GWAS are not necessarily the causative variation of a disease; rather they are strongly correlated with the disease sample. GWAS have been the prevalent tool used over the last few years by researchers of complex diseases like OCD. Because complex diseases, like heart disease and many cancers, are influenced by several factors including environment, lifestyle, and genetics, they are harder to understand than the more rarely occurring but predictably inherited Mendelian disorders, like Cystic Fibrosis and Sickle-cell anemia. In this particular GWAS study, a strong link was identified in OCD patients near a gene called protein tyrosine phosphokinase (PTPRD). This genetic region is also thought to influence memory and learning.

How might these findings help those with OCD?

While the results of the study have yet to be confirmed, the findings could greatly transform outcomes for those with OCD, one of the lesser understood psychological disorders. Scientists may use the information to develop new drugs, as only 60-70% of OCD patients respond to present-day medications. It’s also possible that when personalized medicine becomes the norm, measures can be taken in childhood to minimize the effects of the disease (more on personalized medicine in another post!)

Up Next: I will be writing in more detail about my experience with post-partum OCD. I’ll also fill you in on how my upcoming behavioral therapy unfolds.