Drowning in Stuff

The unique difficulties that hoarding disorder presents

Every once in a while, an extreme hoarding situation makes the news — and further contorts the public’s perception of this extremely nuanced and misunderstood disorder.

There were the 59 mini horses rescued from a hoarding situation on a farm in southern Illinois.

The Chicago couple, in their 70s, who authorities found buried under their own belongings.

And the “army of cockroaches” crawling through every room in a Valparaiso home where authorities had to move the residents into a hotel.

These most severe cases, featured in the news and on reality TV shows, grab our attention. Jokes and judgement follow, as do assumptions about people with hoarding disorder. They must be lazy or dirty or addicted to shopping.

Hoarding, however, is an acute mental health issue, the consequences of which can be devastating for the person, their loved ones, and their community. The disorder happens along a continuum, with increasing levels of severity. Someone with level 1 hoarding disorder may find it hard to get rid of items and have a light amount of clutter in their home; bookshelves overflow, yet they still buy more unneeded stuff. A level 5 case involves the stereotypical piles of newspapers and barely passable walkways in the home, the neglected animals and rampant insects.

Often, the person who hoards pulls away from family and friends, so that people don’t recognize the severity of the situation until crisis hits.

What is hoarding disorder?

An estimated 2% to 6% of the U.S. population has hoarding disorder — a distinct type of obsessive compulsive disorder (OCD). In 2013, it was classified as a separate disorder, rather than merely a symptom of OCD.

People with hoarding disorder struggle to part with possessions regardless of their value, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM) — the reference book that mental health professionals use to diagnose and categorize mental health issues. People who hoard amass items such as newspapers, clothes, expired canned goods, empty bottles, and more. They’re rarely able to step back and see in an objective way how all these things are impacting them, rendering their living space uninhabitable.

Therapist Jane Bodine has worked with many individuals with hoarding disorder over the years and shares some of what she has seen. “Often individuals are unable to use their stove, showers, toilets, dishwasher, for example. Refrigerators commonly are packed full of old food and frozen, outdated items,” she says. “Sometimes there is only a small trail for individuals to walk in the home. Even beds are full of collected items.”

Bodine says she worries first about safety. In evaluating the living spaces of people with hoarding disorder, she looks at whether major windows are blocked, whether the person can get out if there is a fire or if emergency responders can get in. “What is the point of egress? Are there insects? And how is the stability of the house, the floors, the roof?”

Typically, hoarding disorder is more common in older adults. However, people may begin to show signs of it as teenagers, and its symptoms can worsen over time. According to the American Psychiatric Association, genetics also impacts whether someone develops hoarding disorder.

Often, people who hoard have experienced a traumatic event. One study found that people with hoarding habits “reported having experienced greater frequency and greater number of different types of traumatic events, especially having had something taken by force, being physically handled roughly in childhood or adulthood, and being forced to engage in sexual activity in childhood or adulthood.” The death of a loved one is frequently the catalyst, when someone is unable to cope or move forward.

Collector or hoarder?

It’s important to distinguish what hoarding isn’t. People who collect items such as baseball cards or stamps aren’t typically hoarders. Neither is that neighbor of yours with multiple metal coffee cans full of screws and nails. There is a specificity and a purposefulness to the way collectors go about acquiring items.

“Collectors are organized. Their items are on display, admired. Hoarding has no theme, no reasoning, no display. It’s disorganized clutter. A lot of it is impulsive,” says Danesh Alam, MD, a psychiatrist at Northwestern Memorial Hospital.

Hoarding becomes a problem when its impact negatively affects a person’s mental and physical health, or poses inconveniences or dangers to others. Imagine the danger to neighboring structures during a fire. Mounds of accumulated items can become safe havens for insects and vermin. Rodent droppings can dry, break apart, and release as airborne particles, causing life-threatening infections for humans, such as hantavirus. Sometimes those who hoard will amass a large number of animals.

Brian Martin co-owns the biohazard cleanup company Bio-One Chicago North with his wife, Lynn. He says he has found deceased cats amongst people’s hoarded belongings. “The family pets, they just die, and no one ever did anything about it.”

Hoarding can prevent outside support services — such as home health workers and emergency services, as well as plumbers and electricians — from entering the home. This potentially results in further isolation and decline for the person inside and for the property.

Bodine says that individuals tend to become depressed, and lack energy and funds for a cleanup. “Even if the money could be provided, individuals harbor fears regarding loss of possessions, so they resist help, even from family members,” she says.

If the heat is out in winter, for example, and workers can’t get to the furnace, that person will need to live without heat and could suffer health issues as a result. And the amount of tinder and the way it’s stored creates a fire hazard — for people who hoard, their neighbors, and fire fighters.

Impassible spaces can also have negative mental health impacts. Family members, unable to sit or stand in their loved ones’ space, may choose not to enter the home, exacerbating loneliness and isolation. If the person who hoards is aware that their condition is problematic, they may feel shame around it and pull back further from their social network.

Yet, Bodine wants to get to them sooner rather than later. “It is my hope to start earlier with individuals who collect and hoard excessively, to prevent the dire consequences of being coded, forced out of their homes, or dying in their homes due to unsafe conditions, or poor health conditions not addressed,” she says. “It takes a community effort to address this serious condition.”

Multi-layered treatment

Although this accumulation poses dangers and health risks to those who hoard, attempts to remove the objects can cause severe distress for them. The clean-up process is an important part of moving forward, but its success depends on buy-in from the person who hoards.

While family members or neighbors might be tempted to hire a service to go in and dispose of the detritus, that does not begin to address the underlying issues. “The average person is ashamed and humiliated by the mess,” Bodine says.

Despite the shame, hoarders can become upset if someone tries to fix it for them. “It’s not like a family member can come in and put things away, and things will be great,” Alam says. “It causes a lot more anxiety and conflict. It also leads to isolation and worsening of the symptoms in many different ways.”

Lynn Martin recalls one situation where a person who hoarded called Bio-One on their own for a clean up, as opposed to a family member calling. Some months later, the person called again. And later, again. Finally, Brian Martin had a frank talk with the woman, in which he fired her as a customer. “We are not helping you,” he recalls explaining. “We are in business to help people get to a point where they can help themselves, and we are enabling you to continue the unhealthy lifestyle that is endangering you and your pets.”

Getting people who hoard to admit they have a problem is the first step of the process. Alam says that people with anxiety disorders like hoarding can be trapped in denial, isolation, or shame, which makes it very challenging to get them to take steps on their own volition.

Often, an external impetus creates an opportunity for intervention, he says. “Hoarders could get evicted by their landlord or are served with a court or healthcare order to remedy their space. Sometimes the hoarder goes into the hospital, their family enters the space and is shocked, and that begins the process of an intervention.”

Healing doesn’t happen in a snap, however. As with other mental illnesses, hoarding disorder is often treated with acombination of therapy and medication.

“The best treatment is cognitive behavioral therapy (CBT),” Alam says. “It helps patients really focus on organization, decision making, and anxiety management.” Therapy coupled with selective serotonin reuptake inhibitors (SSRIs), such as Paxil and Zoloft, can be the most effective.

Taking a step back

It’s easy to jump to conclusions about people with hoarding disorder. And it seems like it would be an easy fix: Throw out the stuff!

But hoarding is a complex set of symptoms and pathologies that requires time, attention, and treatment. Like many people with mental health conditions, those with hoarding disorder may not know how to get themselves back on track, even if they’d like to.

Therapy, medication, and clean-up efforts need to be carefully calibrated, so that they don’t backfire and end up increasing the anxiety that the person with hoarding disorder is already experiencing.

“We never place judgement and never look down on anyone. We treat everyone with the respect they deserve,” Lynn Martin says. “You get to know somebody when you go through their things, and life deserves that kind of respect.”

Indeed, people who hoard need intervention, support, and respect. And they can do without the sensationalized television shows and gawking neighbors.