|Living With Obsessive-Compulsive Disorder
By Judy Thomas
Imagine you are in class, and you just can't get your notes to look right.
You keep writing and writing, trying to get them to look perfect, and it is driving you crazy. Your professor keeps talking at a brisk pace, and you can't keep up.
Anxiously ripping imperfect pages out of your notebook, you keep glancing behind you to make sure other students aren't watching what you are doing. You feel you are being ridiculous, but you can't stop. You leave class discouraged with a backpack full of balled up paper, and an empty notebook.
For one student* with Obsessive Compulsive Disorder (OCD), this was an everyday occurrence. "OCD was like a prison I lived in," she said. With her obsessions and compulsions raging out of control, her grades plummeted, and she left college in 1989, her freshman year, defeated.
For the next 13 years, her life was dominated by her OCD in many different forms. "There wasn't a time when my brain wasn't obsessing about something," she said. Housebound and desperate, she tried everything including medication, hospitalization, and electric shock therapy. After seeing four psychiatrists and five psychologists, Dr. Jonathan Grayson finally helped her find a way out with Cognitive Behavioral Therapy (CBT).
Through CBT, or Exposure Response Prevention (ERP), she was exposed to her anxiety-provoking obsessive thoughts, and instructed not to perform the compulsions that previously provided her with relief. "His treatment is simple," she said, "whatever you're afraid of, you do it."
Through this type of therapy, she explained that patients learn to "live with the uncertainty of things," with hands that are possibly unclean, and imperfectly written notes. After 10 months with Grayson, she regained control of her life, and is back in school at the age of 30. "He's a life saver," she said.
Although cognitive behavior treatment has been available for the last 20 years, and research has proven it a most effective treatment for OCD, Grayson said some obsessive-compulsives are still suffering unnecessarily for a variety of reasons.
Director of The Anxiety and Agoraphobia Treatment Center in Bala Cynwyd, Pa., and leader of the oldest OCD group in the country, Grayson said misdiagnosis, inadequate care, and financial difficulties imposed by insurance companies unwilling to cover treatment, are some of the obstacles obsessive-compulsives may encounter on their road to recovery.
While stereotypical manifestations of the disorder, like compulsive hand washing, are easily diagnosed, he explained that obscure OCD symptoms can be difficult to identify, and even elude therapists. Some therapists who properly diagnose the disorder will erroneously prescribe medication without providing additional therapy, he explained, based on a belief that OCD has "a biological" basis.
Dr. Edna Foa, author of "Stop Obsessing! Overcoming your Obsessions and Compulsions," Director of the Center for the Treatment and Study of Anxiety, and internationally known for her work with anxiety disorders, agrees "the effect (of medication) is not amazingly wonderful." While she acknowledges that selective serotonin reuptake inhibitors (SSRIs) such as Luvox, Paxil, Anafranil, Prozac, and Zoloft, are more effective than a placebo, she stresses patients' active participation through ERP is key in managing obsessive-compulsive symptoms.
Many other therapists, Grayson surmises, "basically don't keep up with" or "believe the literature" and practice the type of therapy they are trained in, which he explains can be equally damaging to the patient.
Another of Grayson's patients* attests to this, explaining that her symptoms worsened while she was treated with Luvox medication and traditional talk therapy, which were the only options available to her through her health insurance plan with Keystone HealthPlan East.
After suffering with contamination fears for years, she finally sought treatment when her symptoms escalated. Prevented from cooking in her own kitchen, which was never clean enough for use despite her elaborate cleansing rituals, from driving, for fear of touching an unclean steering wheel and from opening her own mail, she was completely disabled. Unable to even use her telephone, her husband placed the call to have her admitted to Bustleton Guidance Center, Northeast Philadelphia, where she was treated unsuccessfully for five months.
Her symptoms progressed throughout her stay, and she pleaded with doctors for help. Passed from therapist to therapist, and repeatedly promised an OCD expert that was never delivered, she started exploring other options and found Grayson's clinic.
She was disappointed to learn his services would not be covered under her current insurance plan because he was not a network doctor. Following an ongoing dispute with Keystone regarding her coverage, she was finally reimbursed minimally for her treatment, but paid primarily out of pocket for her cognitive behavioral therapy. "It really turned me around," she said.
After spending eight weeks at the treatment center, where she was "flooded with exposures" through ERP, she washed her hands of her major obsessive-compulsive symptoms.
Grayson explains that while coverage varies according to insurance carrier and plan, his patient's struggle is "fairly common" and each new patient has to "go through a battle" and "may or may not be successful getting out of network treatment."
Tom Corboy, Director of the OCD Center of Los Angeles, said he has seen the same problem out on the West coast, despite the passing of California Assembly Bill 88 in July of 2000. The bill, or parity law, mandates severe mental illness be treated "under the same terms and conditions applied to other medical conditions"
While he admits the majority of his patients "have no problem being reimbursed," he explains the legislation contains a "loophole that allows managed care organizations to insist that clients seek treatment providers who are on their panel." Corboy, a behavioral therapist, explains this restriction is significant, as the number of cognitive behavioral therapists in the country is limited, and fewer still that serve on HMO panels.
Corboy predicts insurance carriers, concerned with maximizing profit, will continue to find excuses not to cover payment.
So what will the future hold for the 2.5% of the population afflicted with Obsessive-Compulsive Disorder?
President Bush shares Corboy's concerns, and spoke publicly in April of 2000 about the discrepancy in the treatment of the physically and the mentally ill. He said he would like to see changes made to the current system, and intends to accomplish that end through legislation that has not yet been defined.
At the research level, Foa said cognitive behavioral therapy is working for patients. However, she said strides could be made to encourage patients that are still too intimidated to confront their worst fears through therapy.
Finally, Grayson's patient, a graduate of the cognitive behavioral school, concedes from experience that confronting one's fears is key to an individual's recovery. But, she maintains, on a larger scale, if change is to come about for obsessive-compulsives, more patients need to approach their insurance carrier with demands for adequate treatment. "It seems like everybody's afraid to do anything about it." she said.
*patient names were kept confidential at their request.