Two recent presentations in Winnetka and Glencoe attracted standing-room only crowds of local residents seeking information about a subject that has been taboo for generations: mental illness.
On June 23, some 40 people attended BeyondOCD’s Open House about Obsessive Compulsive Disorder and Anxiety Disorder, held in the Glencoe home of Julie and Steven Stark Lowenstein with co-hosts Dave and Christine Murdoch of Winnetka. In May, approximately 170 people went to Indian Hill Club in Winnetka for a presentation on depression and anxiety by Rush University Medical Center’s Department of Psychiatry. One member of the audience said the parking lot was so full it looked like the club was hosting a wedding.
Same with the BeyondOCD event a few weeks later. Parked cars lined up for blocks around the Stark Lowenstein home, giving the impression that someone might be having a party.
But these were celebrations of another sort – of transparency, triumph and hope, as both events provided a place for people to openly discuss their personal experiences or a loved one’s experience with depression, OCD and Anxiety Disorders, which affect millions of people of all ages.
Just what are OCD and Anxiety Disorders?
Anxiety Disorders are the most common of emotional disorders and affect more than 25 million Americans, according to the American Psychiatric Association.
The Anxiety and Depression Association of America (ADAA) describes Generalized Anxiety Disorder as being characterized by persistent, excessive, and unrealistic worry about everyday things. People with the disorder, which is also referred to as GAD, experience exaggerated worry and tension, often expecting the worst, even when there is no apparent reason for concern.
There are a variety of anxiety disorders, according to the National Institute of Mental Health, including GAD, Panic Disorder and Social Anxiety Disorder, that collectively are among the most common mental disorders.
An estimated 2.3% of U.S. adults met the criteria for a diagnosis of OCD at some point in their lives, accounting for more than five million Americans, or approximately one of every 40 adults, as reported by BeyondOCD on its website. The World Health Organization has ranked OCD as one of the Top 20 causes of illness-related disability worldwide for individuals between 15 and 44 years of age.
People with OCD suffer from unwanted and intrusive thoughts that they can’t get out of their heads (obsessions), often compelling them to repeatedly perform ritualistic behaviors and routines (compulsions) to try and ease their anxiety, the ADAA states, adding that most people who have OCD are aware that their obsessions and compulsions are irrational yet feel powerless to stop them.
BeyondOCD’s comprehensive website, www.BeyondOCD.com, clearly spells out what is and what is not OCD and provides helpful insights about what causes and does not cause it. The site also includes information about treatments, therapists, medications, support groups and personal perspectives.
“Our mission is to ensure that all people affected by OCD, anxiety and related disorders have access to the help they need to live life to its fullest potential, said Sally Ruecking, BeyondOCD’s president and CEO.
Glencoe native Susan Richman is a pioneer in the movement to raise awareness of these potentially debilitating but treatable disorders. She co-founded BeyondOCD in 1994 after surviving three years of undiagnosed and mistreated OCD that nearly ended her life in suicide. Once she received the proper treatment, Exposure and Response Prevention Therapy, she set out help others.
“I started BeyondOCD because soon after I learned to manage my OCD, people who knew about me started referring patients to me. These patients weren’t getting better, and I quickly discovered it was because none of them had been told about Exposure therapy, the very therapy that literally saved my life,” she said.
With Exposure and Response Prevention therapy, patients expose themselves to the thoughts, images, objects and situations that make them anxious and/or start their obsessions, according to the International OCD Foundation. Response Prevention requires the patient to choose not to do a compulsive behavior once the anxiety or obsessions have been “triggered.” In Richman’s case, this meant doing things like regularly visiting the grungy bathroom at a hot dog stand in her neighborhood … and not allowing herself to wash up repeatedly afterwards.
“At first your anxiety skyrockets,” she said, “but then your body habituates to the anxiety and you see that it will go away even without performing the ritual. That starts to break the connection between the anxiety and the compulsion. Eventually the obsessions and desire to ritualize go away also.”
It’s hard to summarize all she went through — you can read her compelling story, “Out of the Darkness,” on the BeyondOCD website.
Here’s a summary:
Susan enjoyed a happy, uneventful childhood in Glencoe, graduating from New Trier West High School and then Northwestern University, first in her class with a degree in economics and earning Phi Beta Kappa. She also was an accomplished pianist, got along well with her family and had many close friends.
“I was a North Shore success story,” she told the crowd at the BeyondOCD event.
She also was an adventurer. After college she took a backpacking trip through Europe and stayed in Barcelona, Spain, for two years, teaching English. Then it was law school at the University of California-Hastings, where she again graduated at the top of her class. She went on to work at a large, prestigious law firm in San Francisco.
Then her life was derailed by a rodent.
She was sitting in her apartment one night when she saw a mouse scurry across the floor. By the time she caught up with it an hour later, the mouse was dead.
“It was the fact that it died on its own that made me start thinking about contamination,” Richman said. “I thought it must have had some sort of disease. And so it must have spread that disease all over my apartment.”
Thus began an exhausting, time consuming, life threatening effort to not just clean, but to sterilize everything she came in contact with. Somehow she was able to get work done, and her coworkers didn’t notice anything different about her. “But there was a soundtrack going beneath the surface that was keeping track of all the contamination,” she said.
Richman went into analysis, but her condition worsened to the point that she was suicidal. Her family brought her home to Glencoe, and she started seeing a psycho-pharmacologist. She entered the psych ward of a hospital, and stayed for 20 months.
“I entered the psych hospital for drug therapy, which didn’t work, and after lots of medication and lots of pottery making and gaining 70 pounds, after 20 months in that hospital … I still couldn’t sit on a chair without putting a towel down first,” she said.
A chance encounter changed her life.
From a casual acquaintance, Richman’s sister learned about an OCD program that treated patients with Exposure and Response Prevention Therapy. She and her family were ready to try anything, so she checked out of the psych ward and traveled out of state for three weeks of Exposure and RPT.
“They were the hardest three weeks of my life, but when I got off the plane on my return to Chicago, my mother came to meet me and I was able to greet her with a great big LICK of the airport terminal floor. And she said, ‘You’re cured!’ And of course, I wasn’t cured because at this point there is no cure for OCD. But I was behaving normally again,” Richman said.
“Almost two years in a psych hospital, three years of total dysfunction, and my OCD symptoms were gone in three weeks because I finally got the right treatment,” she added.
Today Richman manages a family ranch in western Illinois, a ranch complete with cows, goats, horses, dogs and alpacas … and all of the mayhem, muck and germs that accompany them.
BeyondOCD is a small, Chicago-based non-profit that fulfills its mission of making a huge difference in the lives of people suffering from these mental illnesses. The organization includes:
- A Scientific Advisory Board that is active and engaged in presenting Live Forums, hosting Virtual Patient Support Calls that reach sufferers throughout the U.S. and abroad, and Virtual Case Consultations facilitated by trained therapists to educate other professionals nationwide. Also, emails and calls from those seeking help are answered by members of the Scientific Advisory Board, and Facebook and Twitter posts with current blogs and articles are facilitated by a social media team.
- A Young Professional Board that hosts several awareness and fundraising events throughout the year targeting college age and up to help de-stigmatize mental illness.
- A Governing Board that is deeply committed and touched by the challenges of OCD and other anxiety disorders.
- Additional volunteers who counsel parents struggling with their child’s OCD, help at special events or with administrative work.
- Two websites, considered the most comprehensive available, filled with over 900 pages of information for patients, family members and educators on OCD and related disorders: www.beyondocd.org and www.ocdeducationstation.org
“We want people to know that they should never give up. If one therapist doesn’t work they should try another. If one go at ERP doesn’t work or one medication doesn’t work, they should try another. I overheard the nurses in the hospital saying that I would never get better, never even get out of the hospital. But I kept trying. OCD is real and disabling, but it’s also treatable. And my hope is that with enough dollars put into research, one day there will even be a cure for it,” Richman said.
If you would like more information about OCD and anxiety, reach out to Sally Ruecking, the organization’s president and CEO, at firstname.lastname@example.org.