Going Inside The Life Of A Woman Living With Hoarding Disorder

12 September 2014 WAMU

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Suzanne is the vice president of a large bank. She’s been living with — and managing — her bipolar disorder for years. But Suzanne, whose name has been changed to protect her identity, also allowed clutter to accumulate in her house and eventually it got so bad that she could no longer use one of her bathrooms because it was blocked by piles and piles of clothes.

“I could barely walk in the front door,” Suzanne says. “When that’s the first thing when you see when you come home and you know that’s what you’re coming home to it just sinks you that much lower.”

When she was depressed, Suzanne would hole herself up in her upstairs bedroom, allowing fast food trash and dirty clothes to accumulate on the floor. She recently realized it was time to make a change when she started dating again for the first time in years.

“How do I tell somebody they can’t come to my house?” she asks.

She hired a company called Steri-Clean to help her with some serious summer cleaning. I drove out to Suzanne’s home in Frederick, Maryland to observe the cleanup process.

We start in the basement, designating certain corners to place keepsakes Suzanne hasn’t been able to use for years, like her Christmas tree. In other corners, we pile up items to throw away, like empty bottles of laundry detergent.

“I don’t think I need to keep my stuffed animals. I like Eeyore. I feel like I can relate to him a little bit,” Suzanne says.

By the end of the first day, the basement is almost completely cleared out, and the kitchen is a work in progress. The next two days will be dedicated to cleaning out the upstairs.

“Maybe I can finally make my house my home,” Suzanne says. “That’s what this whole weekend is for me, is changing this burden into home.”

Scientists say hoarding is a disorder rooted in the decision-making part of the brain. A 2012 National Institute of Mental Health-funded brain imaging study looked at hoarding and found that the anterior cingulate cortex and insula — areas of the brain that handle error-monitoring and emotional decisions — over-activated in study participants with hoarding disorder.

Dr. David Tolin, the Director of the Anxiety Disorders Center at the Institute of Living in Hartford, Connecticut, led the study. “In their brain, everything is important so it becomes very difficult to make a decision about whether something is worth keeping or not,” he says.

Suzanne’s bedroom, after being professionally cleaned. (Megan Pauly)

Hoarding was once closely linked to obsessive-compulsive disorder, but Dr. Tolin says it is now closely correlated with other disorders such as major depressive disorder, anxiety disorders, and attention deficit hyper activity disorder. He says researchers are now focusing on treatment, and certain anti-depressants such as Effexor are being tested for treating hoarding disorder.

Suzanne has been seeing the same therapist for years for her bipolar disorder and depression. She has been working with her therapist on getting used to her new space. And she’s trying to restrain herself from falling into old habits, like eating in bed and letting her refrigerator get over-cluttered.

“I still haven’t gotten myself past the issues that got me here but at least now I’m not stuck, dug under. I’m starting from a blank slate to be able to focus more on what I need to work on from me and I can’t hide behind my house anymore,” Suzanne says.

Several months after my first visit to Suzanne’s home, I went back recently to see how she’s been doing.

The de-cluttering has been a large undertaking, and Suzanne’s work didn’t stop once the Steri-Clean crew left. Suzanne initially thought she’d be able to cook for her boyfriend the Tuesday following the deep cleaning, but the kitchen table and counters were covered with cleaning supplies.

On my second visit, though, the table was set for dinner, and her upstairs carpet had been replaced.

“So, it’s a nice neutral color. It’s brown. I was worried it was going to be too brown, but looking at it, my old carpet was grey but it kind of almost looked like it was this color when I took it out,” Suzanne says. “I was like, oh that was kind of scary.”

Now that the carpet has been taken care of and her living room is in order, Suzanne is putting some energy toward smaller details, like picking out paint colors for her living room and kitchen and deciding on artwork for her upstairs bedroom.

“My living is going to be sparkling sage, it’s a pretty little green color. I really liked it with the color of my couch, it seems like a nice muted calming color and then my kitchen is going to be lighthouse shadows blue which is… not a pale blue but it’s not a dark blue either,” she says.

Suzanne says she’s trying to be satisfied with the steady progress she’s seeing around her. She has now been able to invite people into her home, and her goal is to host an open house for friends and colleagues someday soon.

For a list of local resources, check here: Virginia and Maryland. There are also anonymous online support groups and messaging boards for people who aren’t ready to go public yet, with information here.

Music: “Let Go” by Ryan Adams from Ryan Adams