This Is What OCD Looks Like, Too

For the better part of a year or so, we have been trying to nail down what’s been going on with my daughter Lauren. She has struggled with anxiety, depression, sensory issues and the most pressing issue at hand, obsessive compulsive disorder (OCD). It’s funny because people see Lauren, out and about or in pictures, and they always tell me, “Well, she looks so normal.” I’m like, yes I know. The thing about mental health is it’s often an invisible struggle. Hence, the feelings of isolation mental illness can create.

For the most part, Lauren functions. As of late, the meltdowns, which were contained to home, have happened more and more in public or have just kept her from going outside of the house all together. So we had to make some changes regarding interventions. The good news is she is doing so much better. Like an 180-degree turn for the better. The other good news? I have learned so much in the past year, things I could not have come across any other way.

Being a therapist with a significant amount of education and mental health experience under my belt, I had no idea what OCD really looked like, especially in a child. I knew the textbook definition. I know cognitive behavioral therapy (CBT) and exposure and response prevention (ERP) are the preferred treatment modalities, and I even knew some things that were helpful for people I had worked with. At the core, I saw it just as stereotypically as anyone else. I thought OCD equals hand washing, lock checking, Jack Nicholson and organized sock drawers.

When I share my daughter’s diagnosis, I often find this is what people think. They say things like, “I organize, too!” or “Yes, I totally get it. I wash my hands all the time also.” Maybe they do get it, but for the most part, I think a large number of people have a skewed idea of what OCD really is. Don’t get me wrong. There is a reason this is the stereotype. It is what OCD looks like for some, but for a whole lot of others it looks more like this.

My daughter’s room is clearly not organized. It has never been organized. She hasn’t ever had a clean room for more than five minutes in her life. The only time it is ever clean is after I spend hours working on it while mandating she plays outside. At this point in her journey, she cannot even be in her room with me while I clean it because she gets so upset, agitated and overwhelmed that something might have to be thrown away or she might not be able to find the things I move.

People ask, “Why don’t you have her help you clean it?” They don’t get OCD. She cannot help me clean it because it leads to massive, screaming meltdowns over tiny pieces of paper she cannot find the proper place for, which will then lead to her needing to take a hot bath and several minutes of deep breathing to deescalate her. This, my friends, is OCD.

It looks like not being able to walk across the carpet at times because she cannot stand the way it feels on her feet. After she walks across, she can’t stop thinking about the way it felt and may have to wash her feet to relieve herself from the sensation. It means crawling on her knees and elbows when she gets out of the car after school because the hands and feet can’t touch anything. They must immediately be washed to escape the feeling that something is on them. Sometimes there are tears for hours afterward because even after washing them she cannot escape the pain that feels like something is on them. This is OCD.

She knows these things aren’t rational. She knows she is upset over what others see as “nothing,” but she doesn’t know how to make it stop. Sometimes she curls up in a ball next to me and begs to make it stop. This is OCD.

Please keep in mind, these situations are when OCD is at it’s worst. Life isn’t always like this, but it is sometimes. The sometimes really stink. Right now, she is in a really good, like really good, place. We have made some big changes. I know certain things will likely be a struggle for her throughout her life.

OCD sucks. It really does. I know it’s controversial to put my family’s stuff out there. Sometimes, people think it’s good and sometimes people wonder why I share. I do it because people need to know they are not alone. These things will only stay clouded in shame as long as we continue to hide them in a dark box.

People need to know a child from a “good” home (whatever that is) with two parents, who shower their kid with loving kindness and have read all the parenting books in the world, can still have a child that struggles with anything. They need to know mental illness does not have a bias, but can happen to anyone at anytime. Sometimes, despite people’s best efforts, they can’t just “stop it” or “get over it.”

So we love people with it and we love people through it, just like people love us with and through our own junk. We own it and cope with it the best we can on a day to day, sometimes minute to minute, basis. We choose love, to love people just as they are, right where they are.