When the term OCD (the abbreviation for obsessive compulsive disorder) comes up, most people probably think of behaviors including excessive handwashing, like the titular character from Monk exhibited, and organizing or cleaning the house in a specific way, like Monica from Friends was known for. Though these are common symptoms of OCD, the disorder goes well beyond what most of us are familiar with from stereotyped depictions in popular culture.
In fact, though many people have some sense of what OCD can look like from movies and TV, the disorder is far more complex and can be more debilitating than Hollywood usually suggests. For starters, the many different ways that OCD manifests vary from person to person, the symptoms can morph over time, and there are a number of different types of OCD. Most of us aren’t familiar with the breadth of the symptoms, even though OCD is common.
Here are some basic facts about OCD that will help to get a better idea of what it’s like to live with this widely known but misunderstood disorder.
What are the symptoms of OCD?
OCD involves excessive worrying. However, OCD goes beyond worrying and involves unwanted and disturbing thoughts or images that last a long time. According to the International OCD Foundation, between 2 million and 3 million adults in the U.S. have it, and it can affect anyone, regardless of gender or race. It usually first emerges around puberty or late adolescence.
Christina Maxwell, a therapist with the Anxiety Treatment Center of Greater Chicago, says that she begins to consider an OCD diagnosis for a patient “if someone starts to talk about a lot of unwanted thoughts that are really disturbing, and they feel a lot of shame or discomfort and they can't get the thought or image out of their head.” The “obsessive” part of OCD refers to these disturbing thoughts that arise frequently and don’t just go away on their own. The fact that the thoughts don’t go away quickly on their own, and instead stick in the mind is where the compulsions come in.
With some rare exceptions, patients with OCD will also feel a strong need to carry out “some sort of compulsive behavior,” Maxwell says, aimed at alleviating the intense fear and anxiety brought about by their obsessions. OCD patients who worry about catching or transmitting serious illnesses, for example, may compulsively wash their hands and bathe, as well as avoid certain things and places that they fear will get them sick. If a person with OCD worries that they might accidentally hurt someone’s feelings, they may compulsively poll others as to whether or not their words or behavior were offensive or harmful, even if there’s no evidence that anyone’s feelings were hurt to begin with. Compulsions can take up significant chunks of a person’s day and sometimes interfere with the OCD patient’s ability to work or maintain relationships.
Unfortunately, any relief that comes with performing compulsions is superficial and short-lived. Taking action on the obsessive thoughts actually makes matters worse because it reaffirms to the OCD patient that their obsessive thoughts are real and require that they take action, and not just passing, though upsetting, thoughts that can be ignored.
As Jeff Szymanski, a clinical psychologist and executive director of the International OCD Foundation describes it, having a brain with OCD is like having “a broken alarm system” that alerts the patient to concerns that don’t exist in reality.
Common symptoms of OCD include (but are not limited to) anxiety, intrusive thoughts, or images that may be violent or disturbing and don’t go away quickly, excessive reassurance-seeking, avoidance, a fear of losing control, and a need for things to feel “just right.”
Are there different types of the disorder?
OCD is a wily disorder that can take on many different forms or subtypes. Sometimes people will suffer from multiple subtypes of the disorder throughout their lives. Different types include contamination, harm OCD, pure O, scrupulosity or religious OCD, relationship OCD, and postpartum OCD.
Contamination is one of the most common types of OCD. People with OCD who fixate on contamination are likely to wash their hands or shower far more than is necessary to maintain health and hygiene and will avoid coming into contact with certain things that they fear may be contaminated. Contamination is the sort of OCD that is usually depicted in pop culture, which Syzmanski says sometimes leads people to think that compulsions like washing and cleaning are the only symptoms of OCD.
Then there’s harm OCD. “I see a lot of harm OCD,” Maxwell says, which consists of fears that the person will cause harm to others or themselves, or that serious harm will be inflicted on them by others, and so they try to be hypervigilant of their thoughts, words, and behavior in order to prevent doing damage. Maxwell adds that in her work with children who have OCD, it’s common for them to have a fear of being kidnapped, and the accompanying compulsive behaviors are elaborate bedtime rituals in which the child will repeatedly check door locks, windows, alarm systems, and seek reassurance from their parents that they will be okay.
Some OCD patients don’t suffer from compulsive behaviors at all. In cases where someone has pure O — meaning pure obsessions — they will experience disturbing, obsessive thoughts and images, but do not carry out rituals in order to quell their fears.
How long does it take to get diagnosed?
For a variety of reasons, it can often take a really long time for people with OCD to get a proper diagnosis. According to a 2015 article published in the journal American Family Physician, it typically takes 11 years between the onset of OCD symptoms and receiving treatment.
According to Syzmanski, one of the main reasons why it can take such a long time to get a proper diagnosis is due to the fact that people with OCD are often ashamed of their thoughts and behaviors. “Because people [with OCD] recognize, for the most part, that what they're feeling and their behavior is out of the norm and they don't want to be doing it, they get ashamed and tend to hide and isolate.” People with harm OCD in particular may be convinced that they have committed or are capable of committing serious offenses against others, and will feel tremendous guilt and shame over things they’ve never done or been accused of. If the person isn’t opening up about their symptoms, it can be a lot harder for anyone, even a professional, to notice that they have the disorder.
It’s also the case that even in the medical community, there are a lot of misunderstandings about OCD. Szymanski says that half of the cases of this particular disorder are misdiagnosed by medical professionals.
How is OCD caused?
As is true with many different mental illnesses, researchers have not found a definitive cause, but BeyondOCD.org notes that there is a neurobiological basis for OCD. That is, the brains of people with OCD work differently than the brains of people without it. Further, research shows that it may be caused by a combination of neurobiological, genetic, environmental, and cognitive and behavioral factors. A quarter of people with OCD also have an immediate family member with OCD.
In terms of the genetic component, Szymanski notes that genetic research has shown that if a parent has OCD, their children “may inherit that brain circuitry.”
What treatments exist for OCD?
Research has also shown that certain therapies can markedly improve the quality of life for people who have OCD. The front line treatment is exposure and response prevention therapy (ERP, sometimes called exposure therapy). In ERP therapy, the patient is intentionally exposed to a situation that triggers their symptoms so that they can learn to cope with the discomfort that arises from their obsessions without engaging in compulsions.
Maxwell says that, for example, if a child with OCD fears being kidnapped, exposure therapy could start with just having the child say the word kidnap out loud, then escalate all the way to having the child say “I wish and hope and pray that I get kidnapped.” Through this process, patients learn that the intrusive thoughts aren’t real things that can hurt them or others, and also learn to stop themselves from carrying out rituals in order to calm themselves down.
There are also medications that may be prescribed. The most common medical treatments for OCD are certain Serotonin Reuptake Inhibitors that can also be used to treat depression, including fluoxetine (Prozac) and fluvoxamine. Patients with severe OCD that does not respond to therapy or medicine also may have the option to get one of two kinds of brain surgery: Deep Brain Stimulation (DBS, which is also sometimes used in the treatment of Parkinson’s) or a small lesion that interferes with the overactive circuit in the brain that underlies the OCD.
Regardless of what type of OCD a person has, there are options available for care, and things are never hopeless. Asking for help and support — and getting the right diagnosis — is the first step.
Read more stories about mental health on Allure:
- 9 Things You Should Know About Borderline Personality Disorder, From Someone Who Has It
- This Is How it Feels to Have a High-Functioning Anxiety Disorder
- The Complicated Benefits of Coming Out
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