Hoarding disorder is a real experience that goes beyond the sensational scenes on TV shows like Hoarders. What are the risks associated with hoarding, and how can you help a loved one with this disorder? Savvy Psychologist chatted with hoarding expert Elaine Birchall to find out more.
If you do a Google Image search for “hoarder,” you get pages of horrifying images, some featuring people in full-body HAZMAT suits and face masks up to their hips in stuff.
If you watch Hoarders, the TV show, you see dramatic shots of toxic hazards, distraught people with mascara running down their faces, and supposed "treatment teams" yelling profanities and threats at people. They seem like scenes from a horror movie!
But what's behind these sensationalized scenes? What is hoarding disorder and how does someone develop it? Do the tactics we see on reality TV really represent the best way to help a person with hoarding disorder?
I spoke with Elaine Birchall, MSW, an expert on hoarding disorder and founding force behind the Canadian National Hoarding Coalition. She's a co-author, along with Suzanne Cronkwright, of Conquer the Clutter: Strategies to Identify, Manage, and Overcome Hoarding. In this interview, she:
- Takes an evidence-based and compassionate look at why people hoard
- Explains the risk pathways that lead someone to cross the threshold between being cluttered to having hoarding disorder
- gives in-depth advice on how to help a loved one to begin their journey of recovery
Here's a paraphrased summary of our discussion. But, as with all my interviews, I encourage you to click the audio player above and have a listen to get all the nuances.
What is hoarding disorder and how can you recognize it?
Savvy Psychologist: There seems to be a lot of stigma attached to hoarding. Is that your impression?
Absolutely. It’s a very shaming, judgment-loaded disorder to have. It’s a lonely and fearful experience. The TV shows have been a mixed blessing—they’ve given people the language to call it the right thing, “hoarding disorder,” but they also specialize in good TV. You would never treat people that way.
If you shame people, they can’t make their best decisions, and they’re going to repeat the behavior.
The approaches depicted in these TV shows are not only not compassionate, but they’re also not very effective. If you shame people, they can’t make their best decisions, and they’re going to repeat the behavior.
SP: Let’s back up a little bit. What is hoarding disorder?
It’s a persistent mental health disorder. It’s defined in the Diagnostic and Statistics Manual, 5th Edition (DSM-5). If there is enough functional impairment to someone’s life, it qualifies as a disability and people have the right to reasonable accommodations.
JW: How would someone know that they’ve crossed the line from being cluttered to having a hoarding disorder?
There are three criteria that have to be met for the condition to be a hoarding disorder:
- Excessive accumulation (and failure to resolve that proportionately). When the accumulation is beyond what a reasonable person would call “excessive,” and you start to realize you’re losing control … if that’s a persistent situation, that’s a risk factor for hoarding.
- Some or all of the living space cannot be used for their intended purpose. For example, you can’t use your stove because it’s cluttered and so you have to order food in. You’re bringing groceries home but your fridge is full and there is no space for the new food. You can still live there, but there is a price to pay, and the price is your functioning.
- Distress and impairment in functioning. The distress may be felt by the person themselves or others affected by the hoarding situation like family, friends, or neighbors. If people who have a right to know knew about the living conditions, they would have cause to be concerned.
Hoarding risk factors
JW: What are some risk factors for developing hoarding disorder? What are the causes of hoarding?
We don’t fully know what causes it. In 18 years, I’ve never had a situation where a hoarding situation was created without there being other factors. The risk factors come in combinations.
When someone becomes sufficiently overwhelmed, their executive functioning becomes compromised. The situation gets out of hand and they cross a tipping point of safety, health, and being able to manage their space.
I started thinking about it a while ago as almost like an opportunistic disorder. If someone has a vulnerability, they can be destabilized by something else—perhaps they lose a job, they lose a loved one, their health becomes compromised, they have another mental or physical health condition—there’s quite a list. When they become sufficiently overwhelmed, their executive functioning becomes compromised. The situation gets out of hand and they cross a tipping point of safety, health, and being able to manage their space. At that point, you probably have a hoarding situation.
In terms of vulnerabilities and risk factors for hoarding, here are three risk pathways that I commonly see:
1. Genetics and a family history of hoarding. Fifty to 84 percent of individuals who hoard have a first-degree relative who hoards. There are 3 chromosomes with markers in common between those with hoarding, but we don’t know enough at this point to be prognostic. Having a family member with hoarding behaviors is also powerful—they model beliefs about how to handle things, how to deal with loss, and perhaps not being able to have healthy boundaries and limits. All of that is an extra loading factor on impressionable children. Children can’t reach their developmental milestones in a hoarding environment. They often say to me, “I know my parents love me, but I just can’t get past the fundamental belief that the stuff was more important than I was.”
2. Comorbid disorders. Health conditions like MS, Parkinson’s disease, depression/anxiety, and AD/HD—it’s a long list—can be risk factors. One particularly risky situation is aging with mobility issues. They’re afraid to call in because they’re afraid someone will decide they can’t live on their own. They may not be able to stay on top of managing the recycling, garbage, and the amount of paper that they receive in the mail, and they end up in an unmanageable situation. Another type of risk is recent grief, where the estate of the deceased is distributed and the person is actively grieving. They don’t want the stuff, and they may not even like the stuff, but they’re just not in a stage of grief when they can make decisions. Instead of putting the stuff in storage and waiting for the natural process of grief to occur, they often bring the stuff home.
3. Destabilizing event. I think this is the riskiest path, and not many people are safe from it because it’s a natural human condition. It’s where we’re already struggling to stay organized, stay on top of things … and then something happens that destabilizes us. It’s either one big hit or a series of events. By the time you’re “on your knees,” you’re so overwhelmed you can’t get back up.
How can you help someone with hoarding disorder?
JW: How can loved ones help someone with hoarding disorder?
First of all, get good information. For example, you can visit hoarding.ca to see a video about hoarding disorder, and about how to raise the issue, what to say and not say, and how to keep the relationship/communication line open.
It’s very important to not use blame, shame, or guilt.
It’s very important to not use blame, shame, or guilt. The person is probably already feeling these things, even if they’re not saying it.
Remember that the initial discussion is generally not the thing that will move the person forward to making a change. Reconcile in your mind that this is going to be a series of discussions. At all costs, short of enabling, keep the relationship on track and communication open.
Know that the person has to change their relationship to the things, not just clean up.
Focus on the person. How are they feeling? What do they think?
Don’t always have an answer and a comeback in order to herd them down a path. Walk with them instead. Really listen to them, and don’t go into the conversation with only one answer.
Don’t label people (“You’re a hoarder”). Use their terms, unless the terms they use are demeaning or derogatory words to describe what they do. In that case, say something kinder, such as, “If you’re doing it, you must be doing it for a reason that’s good enough to you, even though it’s causing you problems.”
The person has to change their relationship to the things, not just clean up.
Don’t confront denial. This is not a one-conversation discussion. If you sense defensiveness, stay focused on the person. The goal is to bring the person through this, not get the house cleaned up.
Maintain safety and respect. If the relationship is damaged by you forcibly going in and just getting rid of things, people don’t get over that.
Don’t stage an intervention—that’s a confrontation. Hoarding is not an addiction. This is going to be slower progress than a 30-day program.
Practice what you want to say in front of a mirror and listen to the words you’re using. Even if you mean well, that’s not enough. You can really damage and hurt someone forever with judgmental language. Be kind, not right. Just don’t enable.
Don’t ask rapid-fire questions. Once you’ve raised the issue, they will go into fight-or-flight. Remember this: even if you don’t approve of this, even a stopped clock is right twice per day. Just because this person has a negative situation that they’ve created doesn’t mean everything they say and think is wrong. Listen with respect.
Be kind, not right. Just don’t enable.
Don’t play the role of expert, and don’t use guilt. When I go in to help someone, they teach me. I guide them, I don’t do it for them. They’re doing the work.
If they agree to an easy cleanup, be very careful. Don’t just go in and summarily remove a bunch of stuff just because you’re dealing with someone who is compliant.
Does hoarding go beyond Tidying Up?
JW: Marie Kondo’s book The Life-Changing Magic of Tidying Up has been hugely popular, especially now that she also has a Netflix series. Is this something that could help people with hoarding? How are your methods different?
I do believe, like Marie Kondo, that first and foremost, we should have things that give us joy and meaning.
Let me tell you about a client I had. This was a client who couldn’t even come home from the hospital because of the condition of her home. She asked if I could just go in with my crew. And I said, "I need to talk to you before doing that. Every time I go in, I want to get permission to tell you what I think we need to do and to get your feedback."
I had her permission to open her panties drawer, and it was all wonderfully folded, organized, color-coded. She said, “I tried, I got the book … it just sounded so peaceful. But it was just another way for me to fail.”
For people who aren’t at that point of having hoarding disorder—that is, if someone can establish and maintain using the Kondo method, they are probably at that point very low risk for hoarding disorder. By the time someone who does have hoarding disorder, these methods are not enough.
If someone is at that point, they may consider getting Conquering the Clutter, which we wrote to fill the gap. This book is full of what my clients have taught me over 18 years. Use it as a coaching tool, or go to hoarding.ca and contact me, and I will do my best to help.
JW: Any last parting words of wisdom?
Among the stuff, you need to find your self-esteem and self-respect and carry that forward so you can live the life you’re meant to have.