Story and photos by Jaynie Hancock
A piece of paper lined with names and email addresses makes its way around the table. Each person jots down proof of attendance, but the paper stops in front of 24-year-old Anna, who wishes to only use her first name.
“You don’t know where that’s been,” she says as she giggles nervously, covering her hands with her sleeves and motioning for the paper to continue past her.
It’s the first Saturday of the month. Eleven people sit around a large, rectangular table in a small room marked B2 at Swedish Medical Center in Seattle. Everyone is here to talk about obsessive-compulsive disorder (OCD) and how it’s taken control of their life or their loved ones’ lives.
Obsessive-compulsive disorder, according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, is a mental illness characterized by unwelcome, intrusive thoughts, called obsessions, paired with persistent and often uncontrollable behaviors or actions, called compulsions. OCD sufferers will undergo extreme anxiety about their obsession(s) and their compulsions eventually become ritualized in an attempt to reduce this anxiety.
At this particular meeting, Anna’s father, Carl, acts as a substitute moderator for the therapists who normally run the Seattle OCD group, a support and recovery outlet. He starts the meeting by reading off a sheet of paper—one in 40 people, or 2.5 percent of the population, suffer from the disorder no matter the age, race or gender, he reads.
Before Anna was diagnosed with OCD, she was misdiagnosed with six different diseases and disorders including attention deficit disorder, bipolar disorder, and Tourette’s syndrome.
“OCD doesn’t look like a disease,” Carl says. “It looks like a rebellious teenager or a self-indulgent person that wants everything their way.”
Anna’s OCD, which was diagnosed in 2009, is focused around contamination. She says the floor and her hands are her main obsessions — through her eyes, anything that could potentially be contaminated probably is. If something drops on the floor or if someone touches the floor, Anna says she tries to avoid it completely. She says she struggles with doors because she doesn’t like to touch door handles with her hands — she uses her feet, and when she watches television she presses buttons on the remote with her big toe to change the channels. As a result, Anna and her father have named her OCD “footsie.”
In addition to Anna’s OCD, she has a skin-picking disorder. Psychologist Dr. David Kosins, who has specialized in anxiety disorders for 28 years, says OCD commonly comes with other disorders, termed obsessive-compulsive spectrum disorders. He says there often isn’t total agreement of its existence amongst scientists and experts. The disorders include skin-picking, hair-pulling, Tourette’s syndrome (involuntary tics and vocalizations) and body dysmorphic disorder (obsession with a body part). These disorders tend to be neurobiologically related to OCD and considered to be “OCD problems with another name,” according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition. Carl says Anna’s skin picking is another misguided way to relieve her anxiety.
In an effort to suppress her anxiety about contamination, Anna says she washes her hands about 40 to 70 times a day. She will make 20 to 25 trips to the bathroom, each trip consisting of three to five hand washes. Carl says he’s seen Anna come out of the bathroom after a shower and go straight to the sink to wash her hands.
LIVING WITH OCD
Kosins says OCD can often reduce a person’s quality of life. This is when someone is unable to function at work, school or in relationships. Carl says Anna’s excessive hand washing prevents her from holding a job because she’ll either be consistently late or wash excessively while she’s at work.
“There’s a cruel irony in this condition,” Kosins says. “A person’s life continuously spins out of control, yet what causes it to spin out of control is the OCD which involves behaviors that are designed to exert more control.”
About six months ago, Anna tried, not for the first time, to limit the amount of times she washes with negative results—she began licking her fingers and hands if a sink wasn’t readily available, essentially the same problem with worse results.
“It’s still the same amount of washing,” Anna says. “I’ve just added the grossness of licking.”
Kosins explains sufferers experience several levels of insight. At one end, there are people who believe their actions are absolutely necessary, and if they didn’t do the compulsions something would go terribly wrong with the world, while others don’t think their behaviors are time-consuming or getting in the way of their lives. On the other end there are people who are completely aware that their symptoms are senseless and illogical, but do them anyway. Anna is on this end of the continuum.
A FAMILY’S STRUGGLE
Despite having little control of her compulsions, Anna says she has a good grasp on everything that comes with her OCD, but that doesn’t stop it from being an extremely tormenting disorder. “I’ve heard her crying and screaming that her face and hands burn as she applied more soap and scrubbed one more time,” Carl recalls.
“OCD is a real monster,” Carl says. “Give it a name, personify it, because it’s as if another entity has moved into your home and is pushing everybody around.” Anna’s OCD controls the way she lives her everyday life.
He says once a compulsion begins, the battle is lost. There is nothing he can do to intervene that will be helpful which is one of the real sources of anger in families living with someone suffering from OCD.
At this point, loved ones tend to become part of a sufferer’s ritual or accommodate the sufferer’s symptoms.
Carl is currently in the last stages of divorce. When he moved out of his wife’s house in 2010, he asked Anna if she wanted to live in an apartment with him so he could help her find the kind of therapy she needed. If food or drink spills on the floor, it may as well be part of the floor and Anna won’t clean it up. If they are leaving the apartment, Anna will let her father lead the way so she doesn’t have to touch door handles. He says he cannot do these things for Anna because he would be accommodating her OCD and making his daughter sicker. “Parenting skills and OCD support skills aren’t really the same,” he says.
Anna says sufferers are often embarrassed by their rituals and explains people who are first diagnosed tend to think they are the only one with this kind of disorder. Because of this, Carl says it is common for people with OCD to hide their symptoms and suffer for years in secret. Attending support groups has helped Anna cope with her disorder because she can relate with others similar to her.
Carol Lundemo, 54, is a therapist specializing in OCD, but unlike other therapists, Lundemo is able to relate with her patients in a personal way—she has the disorder. Throughout Lundemo’s life she says she’s had every type of OCD conceivable, from her fear of the number four to checking locked doors. There have been times when her OCD was crippling. When she was pregnant in her early 30s, she recalls having constant anxiety about miscarriages. Over the years, certain therapies and medications have helped her progressively get better. However, even as a therapist, Lundemo says her symptoms will flare up from time to time. She says her husband knows when she gets anxious, but doesn’t yield to her anxiety.
Kosins says the disorder is fairly young in the sense that scientists and specialists still don’t know a lot about it, so effective therapies and medications have not been available for very long. He says people aren’t necessarily born with OCD—it’s more accurate to say people are born with a genetic susceptibility towards some kind of anxiety disorder and the resulting disorder is variable.
Based on her research, Lundemo says on average it takes 14 to 17 years from the onset of OCD for a person to find the right treatment. People are commonly misdiagnosed she explains, so it can be challenging to treat someone in this circumstance.
While there is no cure for OCD, Lundemo says the disorder is treatable. Sufferers can manage their symptoms with medications and/or a cognitive behavior therapy called exposure and response prevention (ERP). The “exposure” aspect of ERP involves sufferers exposing themselves to the thoughts, objects or situations that bring them anxiety while the “response prevention” aspect refers to the sufferers sitting through the anxiety and resisting compulsive behavior.
“It’s not going to get any better,” Anna explains. “You have to resist and go through the fire because eventually the anxiety is going to get so much less if you just resist the compulsion.”
There comes a point in an OCD sufferer’s journey where enough is enough, Carl says. Overcoming compulsions is one of the first steps to getting healthier. As the meeting adjourns, sufferers and their loved ones separate into rooms to go over what was shared and what progress, if any, was made. Thirty minutes later, families exit the building and continue the slow process of overcoming OCD.