Advocacy for the OCD Community - Why Misinformation Hurts More Than You’d Think
We’ve all heard it. Heck, maybe we’ve even said it before:
“Ugh, my desk has to be just right. I’m so OCD about it.”
“I can’t stand it when things are out of order. Guess that’s my OCD kicking in again.”
“Check out my new business, OCD Cleaning Company!”
OCD is a phrase that tends to get tossed around in conversations as a way to express people’s desire for organization. And 99% of the time, this conversational use of OCD is never meant to cause any harm!
But for people who struggle with the mental health disorder Obsessive Compulsive Disorder (OCD), this kind of language doesn’t just minimize their experience, but can even delay them from getting the help they need.
The fact is that it takes an average of 17 years to get proper treatment for OCD. And with 1 in 40 people struggling with OCD, we strongly feel that better understanding and advocacy can help minimize this number.
Today, we want to talk about what OCD actually is, clear up misconceptions, and share how we can all advocate for a better understanding of this mental health disorder.
OCD Isn’t a Cute Personality Quirk - It’s a Debilitating Disorder
Here’s the thing: when people talk about being so OCD about their kitchen, or how their OCD makes them keep their inbox at zero, they don’t mean any harm. However, intent and impact are two very different things.
What OCD Is and Isn’t
Before talking about OCD advocacy, we want to talk about what OCD is and is not. OCD is not just about liking things neat and tidy, and it’s definitely not a quirky personality trait. It’s a chronic mental health disorder that can completely consume someone’s life. Approximately 2.3% of people in the United States alone will struggle with OCD during their lifetime.
People struggling with OCD experience intrusive and distressing thoughts (obsessions) and feel drawn to continuous rituals or behaviors (compulsions) to ease their anxiety, often in ways that don’t make logical sense to others. And when it’s happening to you, it’s exhausting.
When OCD is reduced to just “being particular” or “liking things a certain way,” it changes the public perception of the disorder. This makes it even harder for people struggling with OCD to recognize their symptoms and get the support they need.
So, people’s desire for color-coordinated bookshelves or the need to have their desk perfectly organized is not OCD. And that’s okay! We all have preferences. But confusing OCD with preferences fuels the stigma and misinformation that keeps real people struggling with OCD from getting help and being taken seriously.
Different Forms of OCD
What gets lost in this stereotype of OCD being about neatness or cleanliness is that OCD is actually a disorder of uncertainty and fear. It’s not wanting things to be “just right” for fun; it’s about feeling intense distress when things don’t match what your brain tells you is right, while also feeling like something terrible may happen if you don’t engage in your impulses.
OCD is also not a one-size-fits-all disorder. It shows up in many different ways and can appear during stressful times in a person’s life.
Harm OCD: People with Harm OCD can experience unwanted, harmful thoughts. Many people with Harm OCD feel heavy guilt over these thoughts and may avoid certain people or situations in fear that they may act on these thoughts. This is distressing because the person would never act on those thoughts.
Contamination OCD: People with Contamination OCD experience persistent thoughts about germs, dirt, and contact with potentially contaminated things. This can lead to behaviors like wearing gloves and masks, excessive hand washing, cleaning surfaces repeatedly, or even checking for contamination over and over again.
Postpartum OCD: Postpartum OCD is a form of obsessive-compulsive disorder that can affect birthing parents from shortly after birth up to a year postpartum. It often involves intrusive thoughts about harming, dropping, or cutting the baby, which leads to behaviors like not walking the baby down the stairs, removing knives from the home, or not wanting to give the baby a bath.
Relationship OCD (ROCD): ROCD creates obsessive doubts about a person’s relationship, even if there aren’t any actual problems. People with ROCD have thoughts that question their partner's love and even their own sexuality. These people may also bring their partners into their compulsions by having them take off their shoes at the door or seeking constant reassurance.
What OCD is Commonly Misdiagnosed With
Since OCD is such a complex mental health disorder, its symptoms are often mistaken for other conditions, which leaves the root cause - the OCD itself - undetected.
Some of the most common misdiagnoses of OCD are:
Anxiety Disorders: Since OCD involves intrusive thoughts, this can cause anxiety for the person experiencing this. Plus, since it’s easily identifiable, it’s normally one of the main misdiagnoses of OCD.
Depression: Many people with OCD also experience depression due to their unwanted thoughts and compulsions. Their OCD becomes overwhelming and interferes with their daily life, which leads to feelings of depression.
Post-Traumatic Stress Disorder (PTSD): While OCD and PTSD are very distinct, they can share overlapping symptoms, particularly in the form of intrusive thoughts and compulsive behaviors meant to reduce a person’s distress.
Eating Disorders: The rigid thought patterns and compulsions of OCD can sometimes overlap with eating behaviors. Ritualized eating or very rigid eating patterns can cause weight loss, which leads to people being diagnosed with eating disorders like Anorexia Nervosa.
Attention Deficit Hyperactivity Disorder (ADHD): Though they may seem different, OCD can lead to challenges with attention, impulse control, and mental rigidity, things you also see from people struggling with ADHD.
The overarching theme here is that OCD is only talked about in terms of neatness, so many people with these other forms of OCD don’t even realize they have it. They just think they’re overly anxious, broken, or “too much” for people. And that means they don’t get the proper treatment because nobody ever told them that OCD could look like this.
Why Using “OCD” in Business Names/Branding is Not Okay
Now that you get how and why OCD is misunderstood, we need to address the billboard-sized elephant in the room: OCD has become so misunderstood that it’s even being used in business branding, and that is a huge problem.
With how much power a business name holds, it’s harmful when companies use names like “The OCD Organizer” or “OCD Lawn Care.” It implies that OCD is a good thing, rather than respecting that OCD is a debilitating mental health disorder.
As professional therapists for OCD and other related disorders in Boston, MA, we can tell you that the false narrative that OCD = cleanliness does cause harm. We don’t use other physical ailments as part of our conversational or marketing efforts, so why is OCD fair game?
How We Can Advocate for OCD Awareness
“So…what can we do??”
Advocacy is one of those things that just needs to be simple and intentional. You’re more than welcome to shout it from the rooftops, but really, the best form of advocacy is when you notice OCD being misrepresented in the wild.
Here’s how you can help spread OCD awareness:
Check your own language: If you catch yourself saying, “I’m so OCD about this,” stop and reframe. Instead, say, “I love it when things are organized!”
Educate others: When friends or coworkers misuse OCD, gently correct them. Most people never intend to cause harm! If they want more info, you can always refer them to educational materials (like this blog!)
Support advocacy groups: Organizations like OCD Game Changers work to fight against businesses that promote OCD language like “OCD Cleaning Company.” If you see a business using this language, reach out to them so they can send letters to their business, inform them about what OCD is, and ask them to reconsider their business marketing.
Contact Soultality Center for Psychotherapy in Boston, MA, for OCD Treatment
At Soultality, we believe in compassion, education, and advocacy because understanding mental health starts with listening to the people living it. And when it comes to OCD, the more we speak up, the more we help people find the support they need.
‘Cause no one should have to wait seventeen years to know they’re not alone.
If you or someone you know is struggling with OCD, we are a locally owned psychotherapy center located in Boston, MA. We support people with OCD and related mental health disorders with a holistic approach so they can live their best lives. Schedule an appointment with our experts today.