Hoarding Disorder Appears to Have Increased in the Pandemic
Twenty-one cutlery holders cover the counter of Shirley Hand’s small kitchen. Spoons, spatulas, tongs, pizza cutters, sieves, peelers and beaters are neatly organized. Two dozen or so walking sticks are carefully placed in one corner of the living room, surrounded by an assortment of books, household goods, clocks and trinkets that condense the small space even further.
In the other room, Hand’s bed is neatly made – the blue, white and gray lines of her comforter form tightly to the shape of the mattress – and two pillows lie freshly fluffed. “I refuse to sleep with things on my bed,” she says. “For the longest time I curled up in one small area and everyone else was piled up next to me.” It’s a sign that she’s improved, even if only slightly – that her possessions no longer intrude on her while she dreams.
Beyond her bed, however, Hand’s two-bedroom apartment in downtown Portland is in a permanent state of organized chaos, a collection of multiples acquired over the years, stacked and stored. Bins fill the hallway, and clothes and bags and craft materials and mannequins fill her bookshelves and miraculously remain in peculiar positions. In one corner, three lampshades are stacked on top of each other, serving no other purpose than “My daughter might want them,” she says.
Hand (74) lives in subsidized housing and has struggled with hoarding disorder for more than 40 years. It is a misunderstood and stigmatized mental illness, often misinterpreted and portrayed by reality TV shows as a life spent in squalor and filth. But hoarding disorder can take many shapes and forms, primarily defined by the need to hold on to things that may at some point still serve a purpose for someone. It is about comfort and the thrill of acquisition, or the difficulty of parting with possessions, which eventually begins to weaken and limit. And according to Portland housing and storage professionals, the pandemic has made it much worse.
“What I hear across the board from property managers is that the violations for those with hoarding tendencies are much more serious,” says Miley Stanton-Flowers, an eviction prevention specialist and a facilitator of the support group Buried in Treasures (BIT). ). “Some people who didn’t necessarily have any problems passing inspections before COVID are struggling now, and that’s affecting their ability to pass new inspections.”
Stanton-Flowers — who also works for a Portland-based housing provider — refers to mandated inspections for those on housing assistance to ensure safety standards are met. Of course, hoarding disorder is not limited to people on housing assistance, but it is more likely to be noticed by professionals trying to prevent their eviction—something that can happen when residents consistently fail these inspections.
“Conventional housing and home ownership hoarding situations are often unreported and usually unknown unless they become a city code violation or concerned family members intervene,” says Stanton-Flowers. “Private landlords don’t have to inspect on any certain timeline, and affordable housing providers are usually required by their contract to inspect annually – so naturally there’s a greater chance of finding a hoarding situation in affordable housing.”
Some landlords will conduct inspections despite having little understanding of hoarding disorder or other mental illnesses, which can lead to unnecessary evictions. “Many property management companies have service coordinators to help residents connect with the services they need,” says Stanton-Flowers. “But there are also many property managers who do not have that luxury.”
Without proper training or understanding of resources, landlords may inadvertently make it difficult for someone hoarding to understand the threshold required to pass inspections (such as cleared exit). However, it’s something the Multnomah County Hoarding Task Force, of which Stanton-Flowers is a member, is trying to improve by encouraging landlords to go beyond the scope of their duties.
“We’re trying to provide education to property managers,” said Jill Williams, a behavioral health specialist and co-chair of the task force. “The more specific and encouraging you can be with people, the more likely they will be able to succeed.”
Professionals like Williams, Stanton-Flowers and Laura Golino de Lovato — the executive director of the Northwest Pilot Project, which provides housing assistance and advocacy to low-income seniors — believe that when the pandemic hit, people were stripped of essential support systems. Home health or cleaning services, family visits and even housing inspections kept people in check. The virtual disappearance of those safeguards tends to exacerbate hoarding.
“I was forced to live in a prison of my own making,” says JL, whose name has been withheld to protect her privacy. “It was emotionally upsetting. I couldn’t get away from it. I did occasionally meet with people, but the few people who were willing were very, very, few.”
While these annual inspections can encourage people to clean their units, they can also be incredibly stressful. JL says she tends to commit herself to a psychiatric facility by the time of the inspection and that she finds other ways around it. One year, JL and her daughter rented a moving truck to temporarily house her belongings. After the inspection they put everything back. JL says she barely passed her inspection last year.
JL and Hand (who have failed an inspection in the past) both use storage units to reduce the number of possessions in their homes, which add significant financial burden. Of the roughly $947 that Hand receives from Social Security each month, she spends $324 on storage units and $217 on rent – leaving her with only about $100 a week. JL’s situation is no better. A few years ago, she says, she missed payments and the contents of her storage unit were auctioned off.
Part of the problem is that knowledge of and research on hoarding disorder as a mental illness is sparse compared to other issues. Only one study with a small sample size has been published in the past two years showing an increase in hoarding disorder during the pandemic. At least 50 percent of people with hoarding disorder also suffer from comorbidities (the existence of more than one disease or condition in your body at the same time) such as depression or anxiety, both of which have seen significant increases during the pandemic, and can exacerbate hoarding tendencies .
Hoarding disorder tends to be stigmatized because of the visibility of its symptoms. It can be easy to imagine that simply getting rid of their “stuff” will solve the problem, but this sidesteps the mental problems underlying the hoarding. “You wouldn’t address someone’s drug abuse by going into their apartment and throwing their drugs away,” says Williams. “We’ve seen people who have had these drastic clean-outs, where someone comes in and takes all their stuff, and within weeks the unit is full again.” It is also often seen as something the person brought on themselves, or as a result of trauma. Both are wrong.
Additionally, purges can be traumatizing for hoarding disorder sufferers. “The cleanse put me back emotionally where I needed even more therapy,” JL said. “Coming by feels like I’ve been violated.”
The solution, experts say, comes down to slow and concrete steps to address residents’ violations and hoarding tendencies by prioritizing sanitation and safety. To achieve this, those who carry out the inspections can play an important role. “Housing providers have a particularly difficult job because they are not necessarily equipped, nor is it in their scope, to provide intervention services outside of the mandatory inspections,” says Christiana Bratiotis, an associate professor at the University of British Columbia. “But as housing providers identify these cases … they are a central player for liaison [residents] to other services that can offer them more direct support.”
Fair housing laws provide some support and reasonable accommodations are available for those with a disability. It gives people with hoarding tendencies time to fix the problem, but it doesn’t really address the mental illness it causes in the long run. It simply helps people pass another inspection.
“It’s tough. Property managers don’t have a lot of extra time to coach someone by reducing their amount of stuff,” Stanton-Flowers said. “But it’s important that property managers at least try to engage in some sort of problem solving or resolution instead of just evicting people.”
For organizations like the Northwest Pilot Project, the plan is to get back to business — to start serving those they couldn’t during the pandemic and to catch up on what they missed. Stanton-Flowers, Williams and the county storage task force will continue to hold workshops for property managers and residents, and hopefully get the attention of the board of county commissioners. “The truth is, I’m not sure that [commissioners] know this task force exists as we have no funding or designated position,” says Williams. “Over the years, I’ve tried to attract attention by holding large-scale events… [but] nothing has dawned on me about plans to address this issue other than the training and education we are doing.” County Commissioner Lori Stegmann did not respond to a request for comment.
Hand still struggles with acquisition and the number of possessions she keeps—something she believes will improve when her daughter moves out next year—but there are also signs of improvement. A few months ago she was able to sell the contents of one of her storage units full of glass making tools and materials from her teaching years; when she found just the right person to sell it to. Often, those with hoarding disorder hold on to things because they haven’t found a good way to get rid of them, either because they don’t want to be wasteful or because they want to make sure the items will be loved. Over the years, Hand has spent more than $7,000 to store her glassmaking tools. She sold the items for $1,600.
“There was so much of me tied into it,” says Hand. “The choices I made, the money I spent. It was like a gift to me when she took it because it felt right.”