The “O” in OCD does not stand for organization and using the term to describe your weird organizational habits is hurtful to those who suffer from this mental disorder.
Obsessive Compulsive Disorder at its worst is a debilitating disorder, at its best a day to day struggle for most who are diagnosed. Before one of my friends from high school, Emma Drake, posted on her Instagram about her diagnosis freshman year of college, I had no idea the extent that OCD impacts people. It was shocking to see, considering she was in the top ten of our graduating class and had gone on to Northwestern University, where she is now a senior. But that’s just another example of how mental illness can affect anyone.
I am currently minoring in Psychology, and have taken a myriad of classes, but most importantly Abnormal Psychology. This course was taught by a faculty member who is a practicing clinical psychologist and the content goes over all the mental disorders and how they impact a person and the current treatments. It was eye-opening, and I would recommend the class to anyone, because it taught me even more how to be empathetic to those who are diagnosed with a mental disorder.
Empathy is really at the heart of talking to a person who has been diagnosed with a mental disorder. Even if you cannot fully understand the depth of what they are going through, your empathy and kindness can mean more than you know. The best way to learn empathy is to educate yourself; to realize that others’ experiences can be—and probably are—completely different from yours.
Your personal experience is just that: personal. Everyone has a different set of experiences that influenced who they are and how they act. To assume something about someone without knowing their perspective is incredibly ignorant and harmful.
Last week was OCD awareness week, and in light of that, I want to attempt to educate anyone reading this on what OCD is and how it can completely impair your ability to function in daily life. Emma was gracious enough to answer some questions about her experience with OCD and I hope after reading this, you will reconsider how you use the term OCD.
Editor’s note: Quotes have been edited for length and clarity.
Just to be correct, were you diagnosed with obsessive compulsive disorder or obsessive-compulsive personality disorder? And you were diagnosed at the end of your freshman semester at Northwestern in 2017?
I was formally diagnosed with OCD, specifically a fear of contamination and harming others, in December of 2017. I then spent the remainder of my freshman year of college at home on medical leave recovering.
What was it like to realize that you needed to get help for the problems you were experiencing and getting diagnosed with OCD?
My the time I was formally diagnosed, I was basically at a total point of dysfunction and I had no idea what was going on, so having a name for what I was experiencing was actually a huge relief. I had no idea what OCD actually was, so I just thought my anxiety, which I have always had, was going off the rails.
It was really tough to accept that I had to miss the rest of freshman year, since I really loved college and am a very achievement oriented person. For a couple of months showering and eating and sleeping was basically all I could do, which was a drastic change from my lifestyle and was tough to accept. However, I was lucky to have access to the care I needed, specifically Exposure Response Prevention, a form of Cognitive Behavioral Therapy.
What were specific fears or actions have you experienced?
I became increasingly convinced that I was going to be responsible for spreading germs that would cause someone to get sick. I became terrified of the dining hall, door handles, shoes, bathrooms: anything that felt “dirty.” This progressed to the point in which trying to get clean in the shower took several hours, and I probably spent a couple of hours a day washing my hands until they were cracked and bleeding.
This fear of contamination is rooted in a sense of over-responsibility for the wellbeing of others. My brain perverts my natural and healthy sense of empathy, instead telling me that I am personally responsible for what happens to others to an unreasonable extent. For example, if I buy a particularly expensive dinner or even a latte (anything luxurious) my brain will typically tell me that I could have donated that money and that I am a bad person for not doing so. I know this is not true, and I have learned to identify that as an OCD thought, but it is still something I deal with.
Would you describe OCD as a debilitating mental disorder when it is at its worst?
OCD is absolutely a debilitating disorder. In the span of a couple of months I went from a student at a top 10 university to someone who could not shower in less than two hours, took nearly an hour to get dressed, and could not cook for myself. I was in immense mental pain, I lost a lot of weight, my hands were cracked and bleeding, and I could not function on my own.
How does it make you feel when you hear others use the term OCD to describe things that are clearly not OCD?
It is certainly frustrating to hear people use OCD as an adjective, because it shows a clear lack of understanding of the severity of the disorder. That being said, so many people truly do not know what Obsessive Compulsive Disorder means, which highlights the need for increased education and awareness. It becomes hurtful when celebrities like Khloe Kardashian continue to treat OCD as a quirky, fun organizing vibe despite having faced repeated criticism. If you know better, do better.
How would you describe your life now, is your life somewhat back to normal? Or is living with OCD a completely new normal?
While I am very grateful to have made great progress in my recovery, OCD is a constant in my head and something that I will always live with. I am graduating college in the spring, am able to exist in the world and do the things I want to do, and have a life filled with joy and love. That being said, OCD is a chronic condition that I will always have to manage, but I am so lucky to have the tools and support I need in order to do so.
What has it been like this year living through COVID with OCD?
OCD during COVID has been tough, especially at the beginning when we weren’t sure about how dangerous surfaces were. I have mostly been overwhelmingly grateful that I did the hard part of recovery prior to the pandemic so that I have the tools to deal with this now. I have immense empathy for people whose OCD has flared during the pandemic and who don’t have access to care.
What is something you wish people know about OCD?
OCD is an incredibly heterogeneous disorder that looks different between people, in addition to morphing within the same person over time. Because the disorder is so poorly understood, people often suffer in silence, confusion, and shame for so much longer than they should have to. I also wish that the health profession (and people at large!) understood that Exposure Response Prevention works! It is the only evidence-based treatment for OCD, so it is really important to have a therapist that is properly trained. Finally, I wish all people with OCD knew that they are loved, that they have the capacity for a full and wonderful life, and they’re not crazy. Recovery is really tough, but possible, and so worth it.