I would like to nominate OCD as one of the 5 most misunderstood diagnoses in medicine.

 

Why do I say this? 

 

I talk with people whose lives have been touched by OCD every day. I see the questions they ask and the beliefs they hold.

 

I saw what I learned about OCD in medical school.

 

Five years ago I was misinformed myself when my ow son was struggling.  The things I didn’t know about OCD—or the things I thought I knew and was wrong—lead to a delay in diagnosis and treatment. 

 

I don’t want that to happen to you.

 

So in this podcast episode I would like to debunk the 5 top myths about OCD.

 

Welcome to the Free Me From OCD Podcast. If you or someone you love has OCD, you know that OCD can hold you hostage. OCD can get in the driver’s seat of your life. Here you will find information, tips and tools to put YOU back in the driver’s seat of your life. I’m Dr. Vicki Rackner your host. I call on my experience as a mother of a son diagnosed with OCD when he was in college, physician and life coach to help you evolve into the best and highest version of yourself.

 

 

Myth #1: OCD is easy to spot. 

 

Jim said to me, “Oh I can always spot someone with OCD. They’re neat and organized. They won’t shake your hand, and they’re always washing.”

 

If it were only that easy! There are people who don’t shake hands who do not have OCD, and people with OCD who are not neat and tidy. 

 

Let’s talk about what OCD is. The letters stand for obsessive compulsive disorder, and it packs three punches. 

 

People with OCD have a brain wiring glitch that cases the brain to offer deeply disturbing thoughts, images or urges. These are the obsessions. Imagine having a monster that sets up housekeeping in your head and tears down the things you love most. The presence of the abusive thoughts is the first hit.

 

These thoughts create strong unpleasant feelings. That’s the second hit of OCD

 

In order to manage the unpleasant feelings, people with OCD do something. These are the compulsions.That’s the third hit. 

 

The D stands for disorder. The real problem with OCD is that the obsessions and compulsions can consume hours each day. it keeps people from being engaged in life.

 

Someone with OCD has symptoms for 14 to 17 years before they are diagnosed.  

 

Here are a few reasons it’s so hard to spot and diagnose OCD. 

 

First, people with OCD have the insight that their obsessions and compulsions are irrational. Their obsessions may scare them. Their compulsions are embarrassing. So, many people with OCD go into hiding. Right now there are many people suffering in silence with unmanaged OCD. Many of them don’t even have a name for the thing that’s causing the chaos in their lives. 

 

Second, there is no one presentation of OCD. The obsessions fall into themes, and contamination-related thoughts are just one. People with OCD can have thoughts about harming themselves and others, worries about whether they’re good people or thoughts about getting things just right, to name a few. 

 

Further, themes change over time.

 

Third, many people, including healthcare professionals, fail to think about OCD as a way of explaining the things they observe. They know there’s something wrong, but when they try to tell the story they do not think about OCD.

 

I cannot tell you how many people learn about my coaching work around OCD and say, “You know, I’ve always wondered whether I could have OCD.” Or “I think my mom has OCD.” A contractor said, “I had an employee and I asked him to paint the room. He kept on focussing on a little square in the wall about 6 inches wide that he kept painting and repainting. . I told him, ’That’s fine. Look, you have a whole room to pain . Please move on.’ But my employee would not do it. I pulled him off painting.”

 

Fourth, the most common age of onset of OCD is late teens to early adulthood. This is a time in which kids want more autonomy. They don’t share with their parents in the ways they did in early childhood. Kids are moving out of the house, so parents don’t have a chance to pick up clues. Kids are often in a time of transition, and parents wonder what’s normal and what’s not. The only clues about OCD may be very non-specific, like slipping grades, GI problems, sleep problems or withdrawing from friends. 

 

OCD is common. As many as one in 100 kids have OCD. Still, OCD is vastly under diagnosed.

 

 

 

Myth #2:. OCD is not a big deal. 

 

David said, “Okay, I get it. The doctors say my daughter has OCD. They told me that my daughter has thoughts in her head that get stuck. They told me she has rituals to deal with those thoughts. How is that different than any other person on this planet? Who doesn’t have disturbing throughs that get stuck? Who doesn’t have some superstitious rituals?” 

 

Everything David said is true. Brain chatter is just part of the human condition. You might be interested in a great book called Chatter. I caught an interview in which the author Ethan Kross told two stories.

 

The first was about tennis great Rafael Nadal. A reporter once asked Nadal, “What’s the hardest thing you struggle with on the tennis court?” Nadal said, “The hardest thing I struggle with is the battle with the voice inside my head.” He says his many  rituals help him manage his thoughts and stay present in the moment. 

 

Fans speculate about whether Nadal has OCD. That’s private information between Nadal and his doctors. However, just as an exercise, let’s play it both ways. Let’s say that Nadal does not have OCD. Now we have evidence of the power of thoughts and the importance of proactively managing thoughts. 

 

Let’s say Nadal does, in fact, have OCD. And to be clear, I’m not suggesting that he does.That means that Nadal he has found a way of managing his brain so that he is able to go on and live a full, successful life. that’s what we want for everyone with OCD.

 

Compare Nadal to pitcher Rick Ankiel . Ankiel was drafted by the st. Louis cardinals when he was 19. He was a bright rising star with a golden arm. Some thought he might be the next Sandy Koufax. In the third inning of a playoff game on October 3rd, 2000 Ankiel threw what he calls, “The pitch that changed my life.” 

 

Ankiel threw a wild pitch. Then another and another. Five in a row. 

 

He did not injure his arm or his shoulder or his toe on the pitching mound. There is no biology reason that he suddenly lost control over his pitch right in the middle of a game.

 

Ankiel has a condition baseball players call the yips—the inability to get the ball where you want it. 

 

In his autobiography Ankiel calls the condition a monster. His manager called it The Thing. Other baseball players with the yip call it a wiring problem.

 

This is a mysterious illness. The experts think that it has something to do with the basal ganglia in the brain. Still, it defies what we think we know about how the brain and body work.

 

After a significant efforts at rehab, and a few false starts, Ankiel knew his career as a pitcher was over.  All he wanted to do in life was play baseball, and now he was forced into retirement at age 20. 

 

This is what it’s like for many people with OCD. Suddenly these disturbing thoughts invade their brains. They find themselves doing things they can’t explain. They’re able to stop checking the stove about as well as Ankiel threw a pitch into the strike zone. 

 

And like Ankiel, they withdraw. Unnamaged OCD is a big deal. Many who have unmanaged OCD leave the game. People leave the work force. Some people become prisoners of their obsessions and compulsions, and never leave the house.

 

It doesn’t have to be that way.

 

At the recommendation of his manager, Rick Ankiel went on to play center field. He performed brilliantly. He could get the ball from deep center field 250 feet to third base with pinpoint accuracy.

 

People with OCD can learn to get back in the game by managing their brains more effectively. Sometimes it involves reinvention. A rich life is possible as people learn to manage their brains

 

Myth #3: People with OCD are just undisciplined and lazy. 

 

Chris said, “My son was diagnosed with OCD. I think he should belly up to the bar and stop the craziness. He’s just being lazy”

 

The great paradox is that people with OCD are anything but lazy or undisciplined. Their actions are all in service of the OCD 24/7.

 

OCD is a chronic medical condition. 

 

A father would not say, “My son should just belly up to the bar and will his eyes to see better so he didn’t need glasses anymore.”

 

The cause of OCD remains a mystery. We don’t know what causes OCD any more that we understand why Rick Ankeil started throwing wild pitches. That means that people make up their own stories to fill in the blanks.

 

Here are some things we do know. It appears that there is a genetic component to OCD. Brain scans of people with OCD are different. There is a change in neurotranmitters. Trauma increases the risk for OCD.

 

We also know that OCD is not a personality quirk. Kids don’t spontaneously outgrow it. Parents don’t cause OCD. People with OCD have not done anything wrong. It’s nobody’s fault.

 

Let’s give up the language “That’s so OCD” Let’s educate people that OCD is not a moral failing; it’s a treatable medical condition, and not a punch line. 

 

 

Myth #4: There’s no treatment for OCD. 

 

It’s not uncommon for people with OCD to go from one doctor to another without getting any relief. In fact, some treatments can make OCD worse and not better.

 

That doesn’t mean that OCD is untreatable. It simply means that the families managing OCD haven’t discovered the treatment proven that works, which is EPR. You can listen to the podcast episode about ERP. If you would like to learn more, visit NOCD.

 

OCD can be treated and managed.

 

At some point, people with OCD and their therapists need to engage in a conversation about what successful treatment looks like. 

 

Many people have fantasies that with the right treatment, their obsessive thoughts will stop. Unfortunately, that’s just a fantasy. 

 

The goal of treatment is to manage your brain so that the obsessive thoughts become the background noise in your life. You know that unpleasant feeling won’t kill you—even though it feels like they will. You can learn that you can resist urges.

 

Successful treatment means someone hears the OCD monster offer a disturbing thought and quickly say, “Yup, that’s OCD. Next thought. I’m going on.”

 

It’s also true that some people with OCD are not ready to do the hard work of treatment. Yet.

 

If you love someone with OCD, you might think, “Let me do their OCD work for them.” It just doesn’t work like that . Parents can’t do their kids’ OCD work.

 

Still, if you love someone with OCD you can make a huge difference. You can do your own work, and be the change you want to see.

 

As an aside, have you ever wondered why AIDS was such a feared and deadly disease in the 80’s and 90’s? AIDS is caused by a viral infection, and we’ve all been educated about viral illnesses. Each virus attacks a certain kind of cell. The COVID virus attacks primarily the lung. Hepatitis targets the liver. We get over a viral illness when the immune system rids our body of viruses. 

 

The AIDS virus plays dirty pool. The virus attacks one of the key defensive players in the immune system. It’s like bank robbers disabling security cameras so they don’t get caught. 

 

OCD is a brain wiring problem. One of the key jobs of the brain is deciding who you are, what is true and when to act. if you hear something outrageous, you can say, “That can’t be right.”  If someone tells a lie about you, you challenge it.

 

OCD makes people second guess themselves. It creates confusion about which thoughts to trust and which to dismiss.  The OCD monster gaslights. It’s a verbal abuser that causes people not to trust themselves. This, too, is dirty pool. 

 

I think it’s important to recognize the courage, resilience and hard work of people with OCD who step up and actively managing their brains.

 

 

Myth #5: If someone knew about my OCD, they wouldn’t date/hire/admit/ befriend me. 

 

Here are some truths. First, is you have OCD, you are not your OCD. if your child has OCD, your child’s OCD is not a reflection of your parenting skills. 

 

OCD is a manageable chronic medical condition. If you fell and broke a bone, you are not he broken bone. If you have diabetes, you are more than your blood sugars. You are a person managing a condition.

 

Sometimes it’s helpful to think about OCD as a monster that lives in the brain of someone with OCD. This monster is not you. The monster can get in the driver’s seat of your life. You can take the wheel back.

 

It makes sense that life can contract when you’re held hostage by OCD. Your OCD monster is hurting you, and your world contracts. It’s just like when you have a toothache, all you think about is that pain. 

 

Here are some more things to consider.

 

Colleges want to admit YOU—not the OCD monster. The good news is that YOU are applying to college.

 

I’ve heard people with OCD ask, “Who would want to hang out with me? Or date me or marry me? I’m a mess?”

 

I know a therapist who works in the deaf community. She says, “For every pot there’s a lid.” She told me the story about one of her clients. She was a mom with two small children who were both ventilator dependent. She was lonely. She wanted a life partner. But she thought that she would never find someone who would want to join her family. She was wrong. Now she is happily married.

 

People want to be  friends with YOU—not the OCD monster. People want to date you—not the OCD monster.

 

I would like to comment specifically about OCD and careers.  

 

 

I read a book called Rocket Fuel. The co-authors wanted to know what makes successful organizations successful. The found that successful companies were co-lead bu two people: the Visionary and the Implementors. Think Bill Gates and Paul Allan. Or Steve Jobs and Steve Wozniac.

 

As I looked at the characteristics of Visionaries, it looked like a description of ADHD.  As I looked at the characteristic of implementors, it was describing someone with OCD. 

 

The authors point out that the rate limiting step of business growth is the shortage of implementors.

 

Someone who learns how to manage OCD could step in and fill this void. 

 

These are just a few of the myths about OCD. With the many things we don’t know about OCD, and it’s not surprising that people fill in the blanks with untruths. These untruths can lead to even more pain and suffering. 

 

Here are some steps that you can personally take to step into the role of OCD champion and de-stigmatize OCD for everyone:

 

1. Educate yourself and others about OCD. Keep learning. Pass along helpful resources, including this podcast.
2.  
3. When you find yourself or others making judgments about people managing OCD, reframe the conversation. Ask, “What if we were talking about a COVID infection or cancer instead of OCD. What would you think and say?”
4.  
5. Be as open as you can about your experience with OCD. People learn through stories. My name is on the cover of a chicken soup for the soul book about heart disease. The chicken soup empire is a collection of stories. In the book about heart disease, medical information is interspersed between stories. This is a very effective way to learn.
6.  
7. Some people are not ready to tell their stories. Respect their privacy. You don’t want to out them. 
8.  
9. Watch your language. Let’s avoid, “That’s so OCD.” OCD is a serious medical condition. 
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11. Don’t hide. My last podcast was about OCD and shame. When you experience shame, you tend to keep secrets. Secrecy grows OCD. Find a safe place to tell your secrets. You can send a postcard to OCD Secrets. I’ll leave the address

 

Let me end with one last OCD myth. Some think that people with OCD are broken. This might be the biggest myth of all.

 

You are not broken. You are not a problem to be fixed. You are dealing with a human experience of managing a medical condition. Your OCD does not say anything about who you are as a person. 

 

You are worthy of love —OCD and all. This might be the most important message to get out there. You can learn to manage OCD and step into your heroic potential—and your life.

 

Thanks for stopping by. I hope that you found value in this content. Please feel welcome to share this podcast with family, friends and colleagues. 

 

And just a heads up. We are about to one the OCD Haven for membership. This is a community of people committed to becoming free of the tyranny of OCD. Our focus is to help families who have someone in their late teens and early 20’s learning to manage OCD.  Get on our waiting list to be the first to be notified. I’ll leave a link!