Frederick W. Thompson Anxiety Disorders Centre Mental health Personal Health Navigator

Why OCD is so misunderstood

person washing handsQUESTION: My doctor referred me to a clinic so I can be treated for my obsessive-compulsive disorder. I was upset to learn that the wait to see one of the specialists is about 12 months! Why is it so long?

ANSWER: Obsessive-compulsive disorder (OCD) has long been a hot topic in the media and lots of celebrities have been afflicted with the condition.

Several years ago, you may recall Howie Mandel, the Canadian-born comedian, actor and game-show host, went public with his own struggles with OCD and how it gave him an almost crippling fear of germs.

Possibly the most famous case of OCD involves Howard Hughes, the brilliant American engineer, industrialist and billionaire. His obsessive fear of germs eventually turned him into a recluse.  And when actor Leonardo DiCaprio portrayed the troubled tycoon in the 2004 movie Aviator, he admitted to having a mild case of the disorder himself.

But despite its fairly high profile, OCD remains a misunderstood condition. Unfortunately, that lack of understanding often extends to the medical community as well.

“Most mental-health settings across the country have scant expertise in treating OCD and related conditions,” says Dr. Peggy Richter, a psychiatrist and director of the Clinic for OCD and Related Disorders at Sunnybrook Health Sciences Centre.

The lack of widespread expertise has contributed to very long waits at the handful of centres that do specialize in treating the condition.

In some respects, the shortage of proper treatment stems from the way OCD used to be categorized in the Diagnostic and Statistical Manual of Mental Disorders. The manual – often called psychiatry’s ‘bible’ – is widely used to classify and diagnose mental disorders.

In earlier editions, OCD was lumped in with other anxiety disorders.

Two years ago, the fifth edition – or DSM-5 – was released and OCD ended up in a new and more prominent spot.

It got its own chapter and was grouped together with several related conditions such as hoarding disorder, hair-pulling disorder (trichotillomania), skin-picking disorder, (excoriation) and an intense dislike of one’s own physical appearance called body-dysmorphic disorder.

“The key change was the recognition of the relationship between OCD and these other conditions,” says Dr. Richter.  (As well, DSM-5 recognized hoarding and skin picking disorders to be distinct psychiatric conditions for the first time.)

They all share similar traits, but they manifest themselves in slightly different ways. They also need different treatment approaches than other anxiety disorders.   ‘One size fits all’  doesn’t work.

“With this recognition there may be more help forthcoming, ” says Dr. Richter who is also head of Sunnybrook’s Frederick W. Thompson Anxiety Disorders Centre.

It could, for instance, improve the focus of research into the underlying causes of OCD and the related disorders.  What’s more, patients should now have a better chance of being accurately diagnosed. And with a correct diagnosis, patients should get more targeted and effective treatment plans than they would have received in the past.

Of course, these advances won’t happen overnight. In the meantime, patients like you will still have to wait an extended period to see a qualified specialist.

“It is incredibly upsetting and frustrating for patients and their families when they are told there is a one-year wait for access (to treatment),” Dr. Richter acknowledges.

Dr. Richter and her colleagues in Sunnybrook’s department of psychiatry are working on a strategy to make the wait more bearable.

The plan involves a series of educational lectures for those who are in the queue awaiting treatment.

“At the very least, we can get some information out to them to help begin their journey towards recovery,” she explains.

In the four-part lecture series, spread over four months, patients will be told about the condition, how it’s treated, and what self-help resources are available. As well, they will be shown some relaxation and meditation techniques they can do on their own. They’ll also hear from other patients who have been successfully treated.

Last year, the Sunnybrook team did a trial run of the lectures to gauge the reaction of those on the waitlist.

“I felt like I was doing something proactive, rather than just twiddling my thumbs,” said one participant who asked that his name not be disclosed. “And there is some benefit to being in a space with other people who know what you are going through.”

This month (February 2015), the lectures will begin on a regular basis, and those on the Sunnybrook wait list can attend as many times as they want.

“The information they receive is empowering,” said Eliza Burroughs, a Sunnybrook psychotherapist who will be one of the lecturers.

She notes that there are lots of self-help books and other educational materials available on the web, but the quality is spotty.

“We hope to steer people in the right direction, says Ms. Burroughs. “They can then start using (behavior-modifying) strategies on their own.”

Equally important, the lectures serve as a reminder that “we haven’t forgotten them on the waiting list – and they are not alone,” she adds.

OCD affects about 1 in every 40 people, or 2.5 percent of the population.

Those with the condition experience unwanted, obtrusive thoughts that keep popping into their heads. For instance, an OCD patient might get a headache but be unable to shake the thought that the pain is actually a sign of cancer, says Dr. Richter. Or, another individual with OCD may fear exposure to germs when touching doorknobs.

They often worry that their thoughts or actions will cause harm to others – especially those who they hold most dear.  As an example, Dr. Richter says, they might be convinced that their failure to check a stove burner will lead to a fire endangering their entire family. In reaction, they may develop a series of repetitive behaviors as a means of dealing with the anxiety. So, they will check the stove, but once isn’t good enough. They check, and check, and check again – often in a very particular ritualized manner.

“I think most people can relate to these symptoms in some way. All of us will occasionally double-check to make sure a door is locked or worry about something obsessively,” explains Dr. Richter.  However, it becomes a mental disorder when these thoughts and rituals hijack people’s lives and consume a huge part of every day.

“These disorders may be life-long,” says Dr. Richter. “That doesn’t mean we can’t help people with OCD or related disorders get better or manage their symptoms. But it does mean that it’s a problem that’s not likely to go away and never return.”

There are two main treatments — prescription medications and cognitive behavioural therapy or CBT for short, often used in combination.

For medications, a patient is typically started on a class of anti-depressants known as selective serotonin reuptake inhibitors, commonly known as SSRIs. They may also be prescribed anti-anxiety drugs.

The drugs, she points out, usually have only a limited effect on the disorder. However, they may be able to ease symptoms to the point that cognitive behavioural therapy becomes somewhat easier to do successfully.

CBT is essentially a form of psychotherapy aimed at modifying dysfunctional thinking and behavior. But therapists with training in CBT specifically for OCD and related disorders are not widely available in Canada.

“There are a lot of therapists who have the best of intentions, and they have CBT training – but they lack expertise in OCD,” she says. That means patients “are getting a generic form of CBT which unfortunately is not particularly effective in these conditions.”

Until more health-care providers get this training, patients can expect fairly long waits at the few clinics that do provide the treatment.

“In an ideal world, everyone would have access [to treatment] within months of referral and would be provided with specialized ongoing follow-up,” says Dr. Richter. “But that exceeds our capacity.”

Dr. Richter hopes the educational lectures will help bridge the gap.  She says other mental health centres that specialize in OCD could adopt a similar approach to help patients before treatment begins.

“One can learn to live with the disorder to the point that it is a minimal interference in one’s life,” provided the patient has access to the appropriate treatment, she says.

About the author

Paul Taylor

Paul Taylor retired from his role as Sunnybrook's Patient Navigation Advisor in 2020. From 2013 to 2020, he wrote a regular column in which he provided advice and answered questions from patients and their families. Follow Paul on Twitter @epaultaylor