Living with OCD

Greg Thorkelson, MD with Ryan Reagan, PhD(c), LPC

The Nexus Group’s blog for mental health will be covering obsessive-compulsive disorder  (OCD) this week.  The title above is apt, OCD tends to be a chronic condition that one learns to live with.  As always, we want to emphasize that we take the stigma around mental illness seriously—there is no shame in living with a chronic condition, millions of people learn to live with diabetes, hypertension, psoriasis, etc. Unfortunately, for those suffering from OCD there are often feelings of shame that accompany the diagnosis.  A lot of the suffering is done in silence.

Sadly, many individuals suffering from OCD delay treatment because of the burden of shame.  You can find numerous testimonies that speak to years of hiding symptoms of the disorder.  In young children it may go unnoticed until an attentive adult, like a parent or teacher notices a pattern of behavior.  For those who have recovered, and for those that live with the condition chronically, they will often describe moments for childhood or adolescence where they first noticed something was off.  The writer Jeanne Crotteau describes a moment from childhood where she noticed gum stuck to the carpet, the feelings of disgust that emerged, and the inability to think of anything other its unsightliness for hours.

There is a frustration that comes with this.  Each of us have had the experience of distress. We get the errant intrusive thought of catastrophe and there is a moment of anxiety, or we see something gross that provokes disgust.  We shudder and push out right out of our thoughts, we say “wow, glad I didn’t step in that,” we go about our day.  Imagine for a moment what it must be like to have that experience on a loop that plays over and over throughout the day.  And then one day you notice that if I do “a” sometimes the obsession comes down in intensity.  So logically, one would assume that repeating “a” may bring down the intensity again.  Maybe it worked again.  You now have a prescription—treat with “a.”

This is the logic of OCD.  It may not even matter if “a” and “b” have any relationship—like checking walking around the tree in the front yard three times prevents car crashes.  If it worked before to get rid of the catastrophic feelings of car crashes, then it is likely to work in the future.  We human beings like to repeat things that work. Things that work are predictable, effective, and improve our odds of success. It should be no surprise that the brain encourages us to repeat tasks that “feel” as though they make the world more predictable and therefore more secure.  

The problem is that the world never quite feels “secure enough.”  The whole behavior chain needs repeated whether it makes sense “rationally” or not. This is probably why so many OCD sufferers speak of shame—there is often recognition that the rituals “do not make sense.”  Rituals are often hidden to avoid embarrassment, further compounding shame, further compounding isolation, further compounding frustration.  All roads lead back to “why can’t I just stop? I know this doesn’t make sense.”  If it is any comfort, OCD like any other mental illness has very little to do with intelligence.  In fact, it is the analytical power of the mind that gives force to the illness.  Attention to detail can be an extraordinary asset in the right context.

Some Numbers on OCD

The label OCD has clearly entered the popular lexicon as a substitute adjective for someone who likes order or cleanliness a bit more than average.  This is probably not OCD.  OCD involves an intensity and degree of symptomology that causes “clinical distress.”  This means that the symptoms are bothersome enough to cause functional impairment.  This may show up in children when school performance starts to suffer.  In adults this may appear as difficulty performing job functions or important roles. OCD is diagnosed in both children and adults with the average age of onset at 19.  The National Institutes of Mental Health estimates that 1.2% of Americans suffer from OCD, with women diagnosed slightly more often than men.

Obsessions and Compulsions

There is a popular image of repetitive “hand washing” associated with OCD.  The reality is that it is rare that there is a singular obsession, but rather “themes” that behaviors cluster around. Let us take a moment to define the two common features associated with the disorder as listed in the DSM V.

Obsessions:

1) Recurrent and persistent thoughts, urges, or images that are experienced as intrusive and unwanted, causing anxiety and distress.

2) The individual attempts to ignore or suppress such thoughts, urges or images, or to neutralize them through some other thought or action.

Compulsions:

1) Repetitive behaviors or mental acts that individual feels driven to perform in response to an obsession or according to rules that must be applied rigidly.

2) The behaviors or mental acts are aimed at preventing or reducing anxiety or distress, or preventing some dreaded event or situation, however these acts or not connected in a realistic way with what they are designed to neutralize or prevent, or are clearly excessive.

That may sound like a lot to unpack.  The language is specific and broad, since there is a range of behavior that can go along with an OCD diagnosis.  There are even subtypes that will be further discussed below.  Furthermore, OCD can be diagnosed without the compulsions if the obsessive thinking it prominent enough to cause impairment.  To summarize in simple language:  OCD involves “unwanted” or “intrusive” mental content, compulsive or ritualistic behavior might follow in an effort to reduce distress.

When is it OCD as opposed to just being a worrier?

Mental health professionals assess for a level of distress as one of the distinguishing features in diagnosis. This is because it is common for anyone to feel preoccupied, or have trouble letting go of something.  We all tend to have a reflexive response to suppress thoughts related to our own mortality. Likewise, we may feel compelled to circle back around the block and make sure that we did in fact shut off the burners before leaving the house.  Even some personality traits can make a person appear “obsessive.”  These would not qualify without the level of impairment or functional distress.

The NIMH identifies key distinctions that would support a diagnosis of OCD (also noted in the DSM V):

· The person cannot control his or her thoughts or behaviors, even when those thoughts or behaviors are recognized as excessive.

· The behaviors are time consuming.

· The behavior or rituals are not pleasurable, though relief from anxiety may be achieved.

· Significant problems or disruption to social, occupational, or interpersonal relationships due to these thoughts or behaviors.

Types of OCD

The International OCD Foundation classifies common obsession categories:

· Contamination—fear of being contaminated with substances

· Losing control—fear of acting on impulse that may be illegal, embarrassing, or injurious

· Harm—fear of being responsible for something terrible happening to self or others.

· Perfectionism—concern about exactness, concern with losing or forgetting information or items.

· Unwanted Sexual Thoughts—forbidden or perverse sexual thoughts or images about acts or toward others

· Religious Obsessions—concern with offending God, excessive concern with morality

Common categories of compulsive behavior:

· Washing and cleaning—excessive hand washing, excessive grooming/hygiene activity, cleaning household items excessively

· Checking—repeated checking of safety, catastrophic events, mistakes, physical health

· Repeating—rereading or rewriting, repeating routines or movements (tapping, touching) repeating activities around “good” or “safe” numbers.

· Mental compulsions—mental review of events to prevent harm, praying to avoid harm or catastrophe, cancelling or undoing.

· Others—excessive telling or confessing for reassurance, ordering items, avoiding situations that trigger obsessions

What Do We Know About the Causes of OCD?

A specific cause of OCD is not known, but certain risk factors have been identified.  We know that there is a genetic component.  Higher rates of OCD are found amongst first degree relatives. Additionally, imaging studies of the brain show some indication of difference in structuring.  It should be noted that this specific detail is listed in almost every imaging study and it is very difficult to establish relationships in this type of research.  For example, it may be that having OCD for some time alters the neural activity and organization of the brain.  This should not be read in a way to suggest that something is wrong with the brain.  

We also know that the environment can contribute to the development of OCD.  There is some support in the research for an association with childhood trauma.  This should not be surprising, the typical age of onset for OCD is late adolescence.  Traumatic events are by definition events that exceed the capacity of coping.  This could include the loss of a loved one early in life.  Children have different needs at different stages of development and the need to make sense of catastrophic events is universally human. Some types of OCD have an existential quality.

Another common experience is early childhood illness.  One could imagine that spending significant portions of childhood in serious or recurrent illness could lead to this type of condition. Howard Hughes as portrayed in the movie the Aviator comes to mind.  Mental health professionals also anticipate that the Covid 19 pandemic will have a significant impact on this area.  Trauma can be, but does not need to be, a specific isolated event.  The persistent worry of infection, the stress of being a front-line or essential worker, are conditions that could easily exacerbate existing OCD or contribute to its development.

Treatment for OCD

There is good news in that OCD can be treated and managed.  In fact, an estimated 40% of those diagnosed will achieve full remission.  This does not suggest that the other 60% will not benefit from treatment.  Many illnesses are chronic and simply require more attention to manage them effectively.  This could mean that there are occasionally episodes or “flare ups.”  Certainly, it would be understandable that someone who may be in remission, suddenly had symptoms reemerge when the pandemic hit.

It is important to treat early if identified.  OCD has a strong relationship to habit, and any habit that is developed can take time to unwind.  Untreated anxiety disorders raise the risk for depression and substance use disorders.  One source cited 17 years as the length of time before receiving a proper diagnosis.  Children that worry excessively may benefit from occasional screening.  There is a rare subtype of OCD that is related to streptococcal infections in early childhood (PANDAS).  OCD is also closely related to Tic Disorder which may be present along with the disorder.

The standard treatments for OCD are psychotherapy and medication, and often a combination of the two.  SSRI’s are a class of medications that influence levels of serotonin in the brain, a neurotransmitter associated with depression and anxiety when levels are depressed. Some of the newer antipsychotic medications also appear effective.  For medication, it is important to see a psychiatrist since they specialize in this area.  Primary care physicians may be the first to note symptoms of anxiety, especially in younger populations, but again, OCD is something very different from typical worry.

There is also good news in specialized treatments directly targeted to the brain.  TMS—transcranial magnetic stimulation is showing promise as a treatment for OCD and other conditions.  Deep brain stimulation is also showing effectiveness—however this procedure is much more invasive and involves electrodes implanted in the brain, similar to how a pacemaker may be used to treat cardiac conditions.  TMS on the other hand is a noninvasive procedure that can be done in an outpatient setting. The Nexus Group offers this treatment option.

Finally, psychotherapy can be helpful in establishing and maintaining long-term change.  It should be noted that the type of psychotherapy for OCD is highly specialized.  This is not the type of talk therapy that is comes to mind.  The therapies involved in the treatment of OCD are often systematic and involve exposure to specific triggers that provoke anxiety.  The therapist then works to help the patient block the response and habituate to the anxiety.  Over time this is highly effective, and patients can learn substitute habits to replace maladaptive strategies.

One thing that should not be lost in here is that this disorder requires highly specialized treatment.  There are treatment programs, and sometimes entire clinics devoted to this area.  When searching for treatment providers it is important to ask if there is someone with specialization in this area.  Often psychiatrists and therapists work collaboratively on treatment planning.  Working together can also ensure that the treatment is more tailored to the specific needs of the client.  

OCD is both common and treatable.  If you have concerns about yourself or a loved one an assessment with a trained mental health provider never hurts.  OCD may require a higher level of specialized treatment, but each of us has unique needs and a unique story, sometimes that warrants special attention.

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