Imagine growing up tormented by fears and life-consuming rituals that make no sense to you or those around you. Then imagine the shame of being told by mental health providers that, because you understand that your behaviors are illogical but keep doing them anyway, you must want to stay sick.
One of my patients, Moksha Patel, who is a doctor himself, endured this from childhood until his early 30s. In September 2021, Patel underwent deep brain stimulation surgery, a rare neurosurgical procedure that can be used for severe obsessive-compulsive disorder, or OCD, when it has been resistant to less invasive treatments.
Patel has consented to this publication of his medical information. He shares his story publicly to combat stigma and to provide hope for other sufferers that relief is possible.
I lead a team that treats people with OCD using evidence-based approaches. I am also co-director of the OCD surgical program at the University of Colorado, Anschutz campus, and UC Health, a nonprofit health care system in Colorado.
Our surgical program is one of the few academic centers in the U.S. that offer deep brain stimulation for the treatment of OCD. My experience and research have given me insight into how a rare procedure can be used in real-world settings to provide relief to those who suffer from OCD when other less invasive treatments have not been successful.
A brain with OCD is primed to detect any signs of potential danger. Many people with OCD wake up every day with a sense of dread and an expectation of bad things happening. Daily life is overshadowed by ever-present guilt, shame, fear and doubt. As a result, they carry out compulsive and repetitive activities to attempt to forestall disaster and manage the painful emotions.
OCD fears most often involve the things and people that matter the most to the sufferer, such as their values, loved ones or purpose in life. For example, someone who values kindness and compassion might fear that they will offend, betray or somehow hurt the people they care about.
Sometimes what is hardest for someone who suffers with OCD is a recognition that the fears and behaviors are illogical – insight that provides no relief.
And because other people usually don’t understand, those with OCD do their best to hide their illness so they won’t be judged as ridiculous or “crazy,” which often leads to long delays in diagnosis and treatment. This is a painful and lonely life for the approximately 1%-2% of the world population with OCD.