Seeing hoarding as a mental health disorder

U grad students created a program that addresses unspoken issues.

by Kelsey Shirriff

For more than 20 years, Kris never invited anyone inside her apartment.

Most of her friends and family lived outside of Minneapolis, so it didn’t seem odd that she never had them visit. Something seemed amiss, but they had no idea that she was actually a hoarder.

Stacks of newspapers, clothes, books and decorations piled up in Kris’ home over the decades.

“They had no idea how bad it was,” said Kris, whose last name is withheld because her hoarding is still a secret to some of her family.

Hoarding is a mental illness that affects at least between 6 million and 15 million  people nationwide, according to Janet Yeats, co-founder of the Hoarding Project. 

But chronic disorganization doesn’t just affect the hoarders themselves. It also ripples through families, neighbors and communities surrounding the hoarders, Yeats said.

New insight into the roots of hoarding

Yeats created the project with fellow University of Minnesota family and social science graduate student Jennifer Sampson  in 2009.

Sampson noticed patterns of unresolved trauma and loss while researching hoarders and their families. She reached out to Yeats to explore the subject.

“We said … ‘Let’s do something about this,’” Yeats said.

 Yeats and Sampson learned that often the hoarders they worked with had been traumatized by loss through death, divorce, the end of a relationship or another stressful life event.

“Instead of processing it and doing the grief work, they kick into avoidance,” she said. “And hoarding can be a nice way to avoid.”

Kris’ hoarding stems back more than 35 years. She had a happy childhood and supportive family, but at age 20, she fell into a serious depression.

Once an avid student, Kris dropped out of the chemical engineering program at the University of Minnesota.

“School had always come easily to me,” she said. “So it was like my brain, which I most trusted, [had] failed.”

The hoarding developed as a sort of “cocoon” around her depression to shield her from others, Kris said.

Renae Reinardy, a psychologist who specializes in hoarding, said obsessive-compulsive disorder, attention deficit disorder and family influence can also cause hoarding.

“If you grew up in a household with hoarding, you get that genetic predisposition, but also you get that modeling,” Reinardy said.

Hoarding has traditionally been associated only with OCD, but it doesn’t completely fit there, Reinardy said.

In May, the definition is set to be changed from ‘compulsive hoarding’ to ‘hoarding disorder’ in the Diagnostic and Statistical Manual of Mental Disorders, which better reflects the illness,  Reinardy said.

“It’s great for research, it will lead to new treatments [and] insurance reimbursement,” she said. “There’s lots of good things that come with that.”

Combating stereotypes

Yeats and Sampson also want the Hoarding Project to better inform the public.

“There is a stereotype about people who hoard that they are lazy, dirty, uneducated, ‘this close’ to being homeless,” Yeats said. “[But] men and women hoard, young and old hoard, people from all income levels hoard.”

Reinardy said she has seen hoarders ranging in age from 4 to 80 years old. Many hoarders she has treated are highly educated and high functioning.

“I’ve worked with lawyers [and] with religious figures that have engaged in compulsive hoarding behavior,” she said.

It’s a common misconception that cleaning out a hoarder’s home is the answer, Yeats said.

Sometimes cities will declare a residence unsafe to live in and evict the hoarder, complete an emergency cleanout or give them a deadline to clear it out themselves.

But forced cleanouts don’t get to the core of the issue, she said.

“If it’s a mental illness, then treatment must include mental health,” she said. “The forced cleanout … doesn’t get at why a person hoards.”

Hoarders who are forced to clean out their homes usually re-hoard within three to six months, Yeats said.

“They end up re-cluttering and they just get better at keeping it a secret or they get better at distancing people from their lives,” Reinardy said.

An empty home, an empty slate

For Kris, it took the threat of eviction to confront her hoarding.

After 20-plus years without any visitors except repair workers, Kris called a private cleaning company to come clear out her apartment.

She gave the cleaners a list of items to save and hid in the bathroom as they did their work. The process was draining, but “not heart-rending,” Kris said.

“I just wanted to go back to the place and get a sleeping bag and camp out on the floor and not see anybody,” she said.

JoAnn Velde, housing inspections services manager with Minneapolis, said the city sends 20 to 25 clean-up warnings per year, but rarely has to force people out of their homes.

“It’s very resource-intensive,” Velde said. “If the hoarder’s actually there watching us, it’s very painful. They don’t want to let go of anything.”

Velde has returned to hoarders’ homes multiple times with warnings and said sometimes hoarders simply move and require another cleanout later.

Roger Axel, a New Hope building official, described forced cleanouts as a “roll of the dice” as to whether hoarders will re-clutter.

“Sometimes people just need this help to get back on their feet again,” he said. “We’re very limited in how much time we can delegate to this one thing.”

Shedding the cocoon

Kris considers herself lucky. But it wasn’t without serious action that she could arrive at this point.

After being threatened with eviction, Kris decided to finally come clean about hoarding. She told family members and brought them to therapy sessions and doctor appointments.

“There’s a lot of shame tied up with it, moral failings,” she said. “So I mean it was hard for me to admit I was depressed, but it was even harder to do this.”

Kris still feels afraid she might hoard again, but it’s gotten easier, she said. She has visitors at least every other week and attends therapy sessions weekly.

“It’s really easy for me to sit back and say ‘Well you know I should be doing this and this,’ but that just isn’t healthy or realistic,” she said. “So it’s kind of this balancing act.”

Yeats said the Hoarding Project plans to open a clinic in the coming years. She also hopes that through awareness of hoarding, more people will come forward as hoarders and seek the treatment they need.

“The more we can get the word out,” she said, “the better it is.”