Living with OCD: How to Understand this Complex Condition and Get Help

By Tracy Wright

Many people associate obsessive-compulsive disorder (OCD) with actions like excessive hand washing or folding towels in a specific way. While these can be symptoms of OCD, the condition itself is much more complex and can be truly debilitating to those who suffer from it.

According to the World Health Organization, OCD is one of the top 10 most debilitating health conditions. Understanding OCD is key to bringing more awareness to this condition. OCD is an illness that affects thoughts and actions. The disorder begins with an obsession — unwanted thoughts, repetitive thoughts, urges or images that are intrusive to the person. The compulsion is born out of the obsession as a way to reduce the anxiety created by the obsessions.

Examples of obsessions may be fear of germs or uncleanliness, fear for safety for themselves or others, the need for regularity or balance, fear of unnecessary acts of hostility, unwanted sexual thoughts or a fear of blasphemy. As a result of the obsessions, compulsions can act themselves out as systematic rituals, excessive cleaning, counting or continuously repeating routine activities. The compulsions provide temporary relief by those suffering from OCD, but then the obsessive thoughts return and the cycle continues.

“Many people don’t understand the severity of this condition and how debilitating it can be for patients who are suffering,” said Joseph McNamara, Ph.D., University of Florida associate professor of psychology in the Division of Medical Psychology, Department of Psychiatry. McNamara is the co-director of the UF Center for OCD, Anxiety and Related Disorders. “Typically, compulsions are actions people with OCD perform to obtain relief from their upsetting thoughts. These actions can be physically or mentally performed.”

Jessica* first noticed symptoms of OCD when her son, Peter*, was 12 years old. She has never fully confirmed it, but many medical providers believe Peter suffered from PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). This condition occurs when infections like strep throat trigger a misdirected immune response, which results in inflammation of a child’s brain. As a result, the child can begin to exhibit dramatic life changing symptoms such as obsessions, compulsions, motor and/or vocal tics.

Peter had been sick and his sister was a carrier of strep. From one day to the next, Peter began to exhibit symptoms like eye twitches and strange hand movements. He began developing rituals to take books out of his backpack and had to count to a specific number of steps to enter his bedroom. After a few months the symptoms went away for a couple of years but returned at the age of 15. It eventually resulted in him having to quit school even though he had been an honors student involved in a number of sports and was a self-taught musician.

Today, Peter is a homebound adult who does not leave his home and suffers from severe and persistent OCD. As an adult, he refuses all treatment for his condition and has never entered a formal treatment program, although Jessica did have a world-renowned OCD physician visit her home and officially diagnose him as having severe OCD.

“I wish I had sought treatment sooner for my son,” said Jessica. “Since he is now an adult, the options I have for him are limited. His condition has progressively gotten worse and he is dependent on family for care and support. He has to have the lights and TV on 24 hours a day. He has rarely left the home in 13 years and very seldom bathes or grooms himself. He performs relentless rituals both physically and mentally.”

For OCD treatment, cognitive behavioral therapy remains the “gold standard,” said McNamara. Recent research has shown that many patients see at least half of their symptoms reduced after treatment. There are two components to the therapy: exposure, which is where patients confront the stimuli that lead to the symptoms, and response prevention, which is where the provider works with the patient to identify healthier ways to deal with anxious thoughts than their compulsions.

“At first these response prevention techniques, which are designed for patients to practice alternative behaviors other than their compulsions, may actually heighten anxiety in patients. But we call it ‘short-term pain for long-term gain’ as eventually confronting these obsessions and using alternatives will ultimately allow them to have less anxiety and learn better ways to address their obsessions,” said McNamara.

For families with children living with OCD, parenting is often turned on its head. McNamara advises parents to seek help for their child and not try to enable OCD behaviors. While they think they may be assisting their children by accommodating their compulsions, parents need to work with licensed therapists who specialize in OCD and design a therapy plan, he said.

As a parent who has been affected by a child with OCD, Jessica is now an advocate for bringing awareness to the condition and removing the stigma about it. She also has advice for parents who may suspect their child is suffering from OCD.

“As a parent use the authority you have before your child turns 18,” said Jessica. “If I had known that, I would have done a lot more, but knowledge on the condition was limited at the time. Secondly, be compassionate and realize that it is your child’s struggle. Your family is affected by it, many times adversely, but be non-judgmental towards your child and his or her condition. Getting frustrated only heightens anxiety in people suffering from OCD.”

Adults with OCD most likely suffered from obsessive thoughts their whole life, but it typically reaches its climax where treatment becomes necessary. The UF center offers both intensive outpatient and weekly therapy programs coordinated with medical therapy as needed. Both adults and children living with OCD are truly suffering, and families suffer too, McNamara said. Often after the therapy, patients may need booster sessions or ongoing maintenance therapy.

Although McNamara stresses that there is no “magic pill” for the condition, he offers an uplifting message for those suffering from OCD.

“For those who are suffering from OCD or their families, I want to stress that there is hope,” McNamara said. “We see so many patients that feel helpless, but hope and good treatment can truly make a difference.”

*Names have been changed to protect anonymity

For more information about OCD, including resources, more information and ways to get help visit the International OCD Foundation’s website.