Obsessive compulsive disorder (OCD) has always been somewhat of an “orphan disorder” when it comes to mental illness, misidentified as a rare disorder as recently as about 25 years ago (we now know this isn’t true, the disorder affects one in 40 adults).

Couple this with the fact that obsessive compulsive and related disorders, such as hair-pulling (trichotillomania) and body dysmorphic disorder were redefined, and skin-picking and hoarding disorder were only formally recognized in medical diagnostic manuals four years ago. With all this in mind, it’s clear that information about diagnosis and treatment of OCD and these related disorders is a new addition to the health-care scene.

What does this mean for patients? Most community doctors aren’t fully informed on the ways to diagnose and treat OCD and related disorders, and patients are often going undiagnosed for years. That’s a problem.

OCD: The “orphan” disorder

There have been a number of problematic consequences to the mislabeling of OCD as a rare disorder. For one, OCD education generally hasn’t been extensive due to the idea that OCD wasn’t a condition a doctor would likely see in his/her clinic.

Dr. Katherine Feleki is a general practitioner psychotherapist in Kingston, ON, and like many of us who have undergone medical training, has experienced this education gap first-hand.

“There are huge, huge gaps,” she says of OCD training in medical schools. “Other than acknowledging the disorder exists, maybe a couple of sentences on how it’s treated, there’s no specific training. Most of my training was on depression and anxiety in general.”

This education gap leaves now-practicing doctors with an unfamiliarity of OCD. And even if a doctor does recognize symptoms in a patient, it’s likely he/she may not know the right ways to proceed with treatment.

For Dr. Feleki, she recognizes the symptoms of OCD in patients, but doesn’t feel she has the competency to treat them.

Treatment gaps

To add to the equation, there are only two main publicly funded centres in the GTA where patients can receive specialized care for OCD and related disorders: the Frederick W. Thompson Anxiety Disorders Centre at Sunnybrook, and the Centre for Addiction and Mental Health.

These institutions are great resources for patients who are seeking help for OCD or a related disorder, but these centres do not have the capacity to provide care to each and every patient, making access to publicly funded, specialized care quite limited.

Improving access to OCD treatment

To try and combat this issue, my team at the Thompson Centre developed a unique training program for practicing doctors to help them identify, diagnose and treat obsessive compulsive and related disorders.

It’s from teaching at this training program that I met Dr. Feleki, who felt she “needed to learn the skills for treating OCD.”

The main goal of this program is simple: to expand access for patients. So when a patient who has an obsessive compulsive and related disorder sees one of these trained physicians, these doctors will be able to diagnose and treat it as comfortably as they do depression.

Our first cohort of doctors – including Dr. Feleki – are still in training, but so far the course seems to be a success. Dr. Feleki says the program has provided her with guidelines on how to treat OCD from start to finish.

“Most helpful is the ability to get direct feedback from clinicians who are used to treating patients with OCD. If I’m not sure of an issue, I can get confirmation that I’m on right track or other ideas for treatment approaches,” she says.

Once our first group of doctors graduate from the course, we plan to create a directory for patients and doctors, so they can easily seek out these physicians with specialized training for OCD and related disorders.

Moving forward

Knowledge is wealth, especially when it comes to mental health care and treatment. Looking forward, I hope to see obsessive compulsive and related disorders shed the “orphan disorder” identity, and become well understood in homes and clinics across the country.

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While this condition is generally not well known nor understood by the general public, sadly, this is not an isolated case as BDD affects around two per cent of the population, typically starting during adolescence.

I see many people in my clinic who have been quietly suffering from it for years. The stories we hear are quite tragic.

Like Reid, many people with this disorder pursue surgery because of the excessive preoccupation they experience regarding their appearance and the horrific distress this creates in their lives. In most cases, the results of surgeries are not terrible, however the underlying mental illness is not being addressed. As a result, even after a so-called ‘successful surgery’ most people with BDD remain as distressed as before.

BDD is a chronic mental illness that involves preoccupations with little flaws, real or imagined, in one’s appearance that most of us can live with, but become obsessions for individuals with the condition.

Other people don’t understand how horrifying their perception of themselves is to people with BDD, and will say: “Don’t worry about it” but for the person suffering, they are not able to.

This can result in compulsive behaviours as they process the anxiety such as: asking people for reassurance, taking photos of themselves, or mental rituals like reviewing in their minds how people looked at them. For people with BDD, their appearance is a chronic overwhelming source of sadness and anxiety.

Some become pre-occupied with one flaw, but for others it changes over time; it can change from one perceived flaw to another.

Often people with BDD have lived with it for years, and it has affected their opportunities, such as missing work, inhibiting dating, and potentially preventing intimacy as they may fear the reaction of others if seen up close.

With regards to treatment, the two recognized options (similar to obsessive compulsive disorder) are: cognitive behavioural therapy (CBT), which is a very specific form of psychotherapy involving addressing maladaptive thinking and challenging behaviours; and the second is medication. These most commonly include the SSRI antidepressants specifically and/or antipsychotics to reduce the intensity of their symptoms so they can then begin to challenge their thinking.

It’s really about learning to deal with the disorder, as one can not simply be “free from it”, but rather they can learn to live a full life in spite of it and challenge their distorted perceptions of themselves.

For example, one woman I worked with had a horrendous preoccupation with the dark colour of the hair follicles on her arms and legs, to the extent that she wouldn’t expose her skin at all. For years she was unable to function in the summer because she couldn’t take the heat in her usual long-sleeved shirts and pants.

The intrusive thoughts weren’t rational, in that what others would call a minor “defect” in her appearance if they noticed it at all made her feel hideous. Intimacy was difficult for this patient, as her partner never saw her body in the light.  She was devastated by her BDD and would sob intensely when thinking about her appearance.

Fast forward a few years after treatment: she recently went on a trip to the Caribbean, she wears tankinis now, she holds down full-time work, and she’s in a different relationship with a man who she can allow to see her, flaws and all. She still gets thoughts that her appearance is horrific but she challenges these thoughts now and is living a rich life.

Unfortunately we don’t yet know what causes BDD. We believe it is a close cousin to OCD because of the strong obsession-like thoughts and repetitive behaviours involved. There is a related variant in men known as muscle dysmorphia or bigorexia. Often described as the opposite of anorexia, men with this condition see themselves as small or weak, even if they are in fact muscular.

Clearly more information is needed and research is the route to help us get there.

In the meantime, there are an increasing number of resources available:

Internet resources:

• sunnybrook.ca/thompsoncentre
• www.bddfoundation.org
• bdd.iocdf.org/
• www.meetup.com/Body-Dysmorphic-Disorder-Support-Network
  • Note: this is a private “Meetup” group. New members must be approved by the Organizer.

Books:

• COGNITIVE-BEHAVIORAL THERAPY FOR BODY DYSMORPHIC DISORDER: A TREATMENT MANUAL. Wilhelm, S., Phillips, K. A., & Steketee, G. (2013)
• FEELING GOOD ABOUT THE WAY YOU LOOK: A PROGRAM FOR OVERCOMING BODY IMAGE PROBLEMS. Wilhelm, S. (2006)
• THE BDD WORKBOOK: OVERCOME BODY DYSMORPHIC DISORDER AND END BODY IMAGE OBSESSIONS. Claiborn, J. & Pedrick, C. (2002)
• THE BROKEN MIRROR: UNDERSTANDING AND TREATING BODY DYSMORPHIC DISORDER. Phillips, K. (2005)
• UNDERSTANDING BODY DYSMORPHIC DISORDER. Phillips, K. (2009)
• THE ADONIS COMPLEX: HOW TO IDENTIFY, TREAT AND PREVENT BODY OBSESSION IN MEN AND BOYS: THE SECRET CRISIS OF MALE BODY OBSESSION PAPERBACK. Pope, Harrison G. (Author); Phillips, Katharine, A. (2002)

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