Helping Someone With a Hoarding Disorder Takes Time and Patience
First instincts can be unhelpful, counterproductive and — sometimes — even harmful
For years, Alexandra Berrie and her husband, Zak, had been dealing with conflicting levels of cleanliness in their home, or what she calls "the organization versus chaos spectrum," but as they got older, the fights began to intensify.
"You always say you're going to pick up, and you never do," he complained. Whether it was the dining room table overflowing with mail, the bench at the foot of their bed covered with craft supplies or the inability to invite guests into their home, Berrie's hoarding was starting to impact her family and their relationships with each other.
"I would say to myself, with every intention, 'Yeah, I'll get to it,' because my goal is to have a clean and organized home, but I don't really know how to do that," Berrie says.
So while her case is less severe than some, she decided to seek treatment with a therapist who specializes in hoarding disorder (HD) — a recently recognized psychiatric condition. Previously considered a subtype of obsessive-compulsive disorder (OCD), HD wasn't given its own entry in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) until 2013.
According to the American Psychiatric Association (APA), people with HD experience chronic difficulty parting with possessions due to a perceived need to save the items, causing significant distress when they try to part with them, leading to cluttered living spaces that interfere with daily functioning.
For Berrie, just thinking about parting with her dead mother's handwritten letters or further polluting the environment by adding more trash to landfills makes her weep.
"It's not about the things," she says. "It's about the feelings behind the things — how hard it is to sit with feelings of grief and let go of things that I haven't completely processed. And it seems like the older I get, the more grief compounds, and it takes a lot of emotional fortitude to do that."
"It's not about the things. It's about the feelings behind the things — how hard it is to sit with feelings of grief and let go of things that I haven't completely processed."
She's not alone. HD affects 2.6% of Americans, with higher rates in people over 60 and those with other psychiatric diagnoses, such as anxiety and depression. Often starting early in life and worsening with age, HD seems to be hereditary, occurring with equal frequency in men and women and across countries and cultures.
Hoarding isn't the same as collecting. While collectors typically acquire certain objects intentionally, organizing them to be displayed and admired, someone who hoards often acquires their possessions impulsively, creating the disorganized clutter that characterizes HD.
"Most people who hoard don't want to live like that," says Danielle Schlichter, a clinical psychologist who specializes in treating HD. "They're not being stubborn or lazy or messy. Their brains are simply wired differently than people who don't have hoarding disorder, and they just can't figure out how to hold on to their stuff and live in a clean and organized space at the same time."
Berrie says she doesn't see the clutter. To her, it simply disappears into the background.
"You might be looking at what you see as a very messy room," she says. "For people who have hoarding disorder, we really just don't see it, and we don't see the problem."
This is why researchers developed the clutter image rating (CIR) — a visual scale used to determine and assess the severity of clutter and compulsive hoarding.
Without intervention, HD can create unhealthy and unsafe living conditions as piles of clutter overwhelm living spaces, making them unusable. The chaos interferes with daily tasks like cooking, sleeping and personal hygiene, and if left untreated, can ultimately lead to isolation, eviction, job loss, fire risk and serious conflict with others. It can also create a public health hazard as the clutter overflows beyond the inside of the hoarder's home into cars, yards and workplaces.
HD and Relationships
Studies show that people with HD report high levels of family conflict and low levels of social support. They're also more susceptible to loneliness, social isolation and suicide.
Like Berrie, most people with HD rarely seek help on their own, and in almost every case, it's friends and family members experiencing the unintended consequences of a loved one's HD who request intervention.
Most people with HD rarely seek help on their own, and in almost every case, it's friends and family members experiencing the unintended consequences of a loved one's HD who request intervention.
But not everyone experiencing HD is ready to receive help or accept treatment.
"At its core, hoarding disorder is about avoidance," Schlichter says. "Avoidance of unpleasant, uncomfortable feelings like distress, anxiety, grief, loss and shame."
This makes saving items that feel important a source of control for someone with HD. But the more these intense, uncomfortable feelings are avoided, the scarier it seems to have them in the first place, she says, which creates a negative feedback loop.
"By avoiding, you teach yourself that you have to keep avoiding," she says. "So even when someone who hoards can admit there's a problem, there's this constant procrastination, which can be frustrating for someone trying to help."
How to Help
HD is a complex and difficult-to-treat condition, making time and patience key. Despite best intentions, first instincts can often be unhelpful, counterproductive and sometimes even harmful.
For instance, it might seem like a good idea to simply clean up and toss the accumulated belongings, especially those that seem like trash. But the deep attachment someone with HD has to their belongings means this approach can be traumatizing, creating a sense of betrayal and lack of trust that can damage relationships and potentially cause a relapse when the person with HD tries to comfort themselves by replacing their lost items.
Instead, here are some practical, loving ways to help someone with HD.
Understand the behavior is caused by a brain disorder. Someone with HD isn't purposely being messy or choosing to be disorganized. Their brain is simply wired differently than someone without HD.
"I'm not trying to harm you or piss you off," Berrie says. "I'm messy because I don't have a choice. Please be patient with me."
"I'm messy because I don't have a choice. Please be patient with me."
Much like someone with dyslexia, people with HD need appropriate tools to help them manage the disorder, and therapy can be expensive and difficult to access.
Maintain the relationship. Given the treatment barriers and relationship challenges that tend to characterize HD, just being supportive and non judgmental can be a huge help. One way to accomplish this is to focus not on the mess itself, but the safety concerns caused by the clutter, such as increased risk of fire, falls, pest infestation and food poisoning. This shows the hoarder that you care about their welfare, and not just the stigma associated with HD.
Offer time and emotional support. Confronting grief and loss is hard for anyone, but especially someone with HD.
"It's really lonely when you're trying to declutter, and you're losing possessions," Berrie says.
"It's really lonely when you're trying to declutter, and you're losing possessions."
That's why, for some, offering to simply sit together providing emotional support and encouragement while they declutter can be a big help. Also known as body doubling or parallel working, the technique can help improve focus, reduce distractions and increase accountability.
Adjust your expectations. It's unlikely that someone with HD will ever be as clean and organized as someone without the disorder. For many, it's a constant, lifelong process of decluttering, resisting the impulse to collect more items, and learning how to organize what they have.
"I identify myself as a hoarder in recovery," Berrie says. "Just like alcoholism, it's not something that you can flip a switch and be cured of."
