The Dirty Work of Keeping Obsessive-Compulsive Disorder in Check

Program has OCD sufferers kick tires, jump in Dumpsters, touch toilet seats.

February 12, 2010, 5:22 PM

Feb. 15, 2010 — -- Away from home for a conference, Faye Lange takes a minute before heading out for what she calls "arguably the most difficult part of my day."

It's the part where she washes up. And it's never just a minute.

First, Lange washes her hands. And then it's the faucet. And because cleaning the faucet means she touched it, it's her hands again. And then it's her face, and then her hairbrush -- all with extreme thoroughness.

She talked about cleaning her brush: "I like to get in between the bristles as best I can kind of take them by rows."

After her hairbrush, it's her necklace. After 20 minutes, having cleansed a corner of her world of the death-inflicting germs that probably aren't there -- but could be -- Lange arms herself for the world outside with a refill from her massive traveling supply of Purell.

The name for this behavior is OCD: obsessive compulsive disorder. Lange has it.

"OCD can control basically everything you do," Lange said. "If I had to guess, I'd say it took up 85 percent of my day."

For Lange, the cleaning is never really done. For example, there's that doorknob between her and the conference downstairs. Wet wipe in hand, she makes it through.

The conference is the 16th annual gathering of the International OCD Foundation. It's a three-day session, this time in Minneapolis, of workshops and lectures. At the conference, OCD, the fourth-most-common-form of mental illness, is treated like something of an adventure.

One of the highlights is a man in an Indiana Jones hat leading a troop of OCD sufferers on a make-believe camping trip through the halls of the Minneapolis Hyatt. Activities include kicking tires in the hotel parking garage; a session in which people pretend to be committing murder with knives; and, in the dark of night, a jump up-and-down in a dumpster. It all begins to make sense only when you get a better sense of what OCD is, and what forms it can take.

"I get scared at night and have to check under the bed a certain number of times," said one young girl at the conference.

"I find the need to write things perfectly, " said Nikka Hepburly, another conference-goer. "I may ball up anywhere from 20 to 30 pieces of paper until I feel like I've written it down perfectly."

"I would spend 45 minutes to an hour in the shower and would use the whole bottle [of shampoo] in one day," said Brendon Corbin.

And that man in the hat? Well, he also does some serious lectures. He's Dr. Jonathan Grayson, an authority on OCD.

"OCD is a biological disorder and a learned disorder, and basically the person is going to have obsessions," said Grayson.

"Obsessions are what they are afraid of. ... So at the core of OCD, the person is trying to be 100 percent certain. And you start asking a whole lot of questions that aren't answerable."

The questions are, however, logical, Grayson said -- which is part of the trap.

'A Nasty Form of Perfectionism'

Lange talked about not being able to touch doorknobs. She gets tripped up, she said, when she thinks about "possibly thousands of people touching them, and who knows what kind of diseases those people have....

"Deep down I do realize that there probably isn't that big of a risk. But still, the fear is there, and there's different relatives who've tried to help me. ... My internal thought is, 'Good for you. Gamble with your own health.'"

But OCD isn't always -- or just -- about germs. It can be any thought that makes you anxious and won't go away.

"Checking things, is the doors locked, is the water running," said Grayson. "We have people who have a nasty form of perfectionism, students who want to do their work perfectly."

That could be a good thing -- "except that you have a paper that you never finish because it's not perfect," said Grayson. "There are a lot of obsessions that are primarily mental, meaning they don't have something happening in the environment."

Grayson's virtual camping trip through the hotel is based a shortened version of an actual camping trip he leads, on which OCD campers experience a therapy he calls exposure.

"Exposure is all about what are you afraid of, let's have you come into contact with it," Grayson said. "...You can decide that you would like to live with uncertainty and what choice do you have. The saddest thing about all the rituals you do: You never get the prize. That you are in just as much danger either way."

The tire-kicking addresses a fear of impulsively doing harm. The time spend playing with knives is for people with a fear of becoming homicidal, to prove to themselves they won't hurt anyone with a sharp object.

For Lange, the big challenge would be the outdoor part of the excursion -- just imagine the germs.

Then Grayson came up with a shocker.

"Is there anyone here with contamination issues who is holding a bottle of Purell? I'm just going to ask, can I have your bottles of Purrell?"

There was a lot of hesitation in the room.

"You don't have to do this , but you don't have to get better either," said Grayson.

Lange handed over the hand sanitizer.

"The doctor just took away my hand sanitizer," she said. "I'm feeling really nervous about that, because now I like have no safety net. ... I have to venture out now and I don't have any kind of backup for my OCD. It's scary."

Grayson explained the exercise.

"Your goal is, you're now going to live in a dirty world that is dirty all the time. You will never be fully clean again. Now, the good news is, you never were fully clean. ... The most torturous part of OCD isn't so much the exposure that happens in real life, it's trying to fix it. So you know, I can get dirty in 10 seconds, but that might take me 10 hours to fix."

'It's Very Emotional for Me'

It was an odd sort of Odyssey, this group of people with OCD trekking around downtown Minneapolis confronting their fears.

"So my question is, how do you guys feel about dumpsters?" said Grayson. "Now, people think what we do is a tad odd, and what I want to point out is that, in a sense, everything we do is normal. People regularly do put trash in a dumpster, and then they just drive to work, and they may even eat at work without washing their hands."

Lange said being with the group made it easier for her to step forward and touch the dumpster. But it still took quite a pep talk from Grayson to get her to do it.

"Think about how much it has stolen from you, how many times you've been humiliated because of your OCD," said the doctor. "How many times there's something you wanted to go to and you didn't get to go, how many times you wanted to be in a relationship and your OCD stood in the way. And if you have parents or loved ones, how many times you tortured them, you made them do your rituals. You're beginning to try and take your life back."

Lange described the experience afterward.

"My heart was racing and all I could think about was the possibilities for all the horrible things that could happen," she said. "I just kept deep-breathing through it, and then the doctor led us through, I don't even really remember exactly what he said, but just to remember how the disease [had] stolen so much from us, and I don't know what hit me and I just got a little emotional and a few tears ... It's very emotional for me."

There was one more challenge ahead. It was back at the hotel. The test: Campers had to put a hand on a public toilet seat, then put something in their mouths with the same hand.

"My whole life I spend doing this," said Grayson. "It is gross and somewhat risky but OK, I've only been doing it 30 years. Which is not to say it's safe...

"OCD is like cancer... it grows and it gets out of control. So you know what? When you treat cancer, you cut it out. So if you chose to do this, you are cutting out the cancer -- and if you don't have contamination, you are supporting other people. We're not saying it's safe, we're saying life is a risk so we are taking a risk."

But it was more than Lange could handle.

"He wanted us to touch the toilets and then eat a tic-tac without washing our hands, and I just knew from the dumpster experience that I just can't handle that right now," she said.

The conference was more than five months ago now. But just the other day, "Nightline" paid a visit on Lange at home. She said she really took something home from the conference.

"Every time I have a difficult time or difficult day with the OCD, I think back on that, and I think about how many things I haven't been present for, been either worried or anxious and just so much of my life was taken," Lange said.

The message, she said, was that the worries aren't worth it. Now, Lange has her morning routine down to about five minutes, from 20 last summer. And then we went out because she wanted to show us another breakthrough, at a local coffee shop.

There was a door handle.

"[Usually] I would use my coat or bring a bleach wipe," Lange said.

Now, no problem: She grabs the handle with her bare hand and walks right in.

And that is progress.

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