Hoarders: how to treat a condition no one wants to talk about

This story is about something we can probably all relate to: not wanting to throw something away. Maybe it’s a baseball card collection, or a garage full of unread National Geographic magazines. But when the need to acquire and keep things crosses a certain threshold, it’s known as hoarding. It's a disorder that’s as difficult to diagnose as it is to treat. It's not as rare as you might imagine. Hoarders make up anywhere from 1.5 to 5% of the U.S. population. Cases range from cluttered living spaces to houses buckling under the weight of what appears to be trash. Many hoarders don’t learn how to cope, and the condition affects not just them but also those around them. KALW's Sam Harnett reports.

(Note: the name of the woman whose home we visit has been changed to protect her privacy.)

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SAM HARNETT: JD lives in a hotel room in Belmont close to where she grew up. She relocated there last year to sort through her childhood home after her father was moved to assisted living. JD's parents were hoarders, and parts of their house had to be cleaned out with shovels. JD’s home isn’t as bad, but it isn’t great either. 

KARI PETERSON: There’s very limited counter space and it looks like things could very easily fall. . .

That's JD's cousin, Kari Peterson, talking about JD’s bathroom. Unlike many in her family, Peterson suffers from being obsessively neat. She runs a  personal organizing business, and brought me to JD's home. The main room smells strongly of JD's two dogs and incense. In the glow of the large, muted TV, it takes us a few minutes to find a place to put my bag. Every available space is covered with stuff -- books, boxes, clothes, wigs, and plastic things are stacked on the kitchen counters, on the heaters, in front of the window, and on the floor. JD takes down a barricade made for the dogs and leads me through a passageway to the far side of the room. Her king-sized bed is completely covered, except a small body-shaped area near the headboard. An ironing board serves as a side table, and starting there, she tells me how everything is arranged.

JD: There are prescriptions in one and over the counter in the other. Then I am an insomniac so I need to have stuff in my bed that is nearby, in case I am close to being asleep but I'm not quite asleep yet, I need to have some kind toys or books or games or some kind of little, this needs batteries, but just you know, crap like that, so I don't have to get up in case I could fall asleep but I'm not going to really soon and I don't want to have to get up and go find something to do. Here is some of my nail polishes right here and right here. You see, it's all right there. Here are extra flashlights and extra batteries in case I run out. Okay that is just a crazy thing.

HARNETT: And the Jujubes?

There's a stack of about thirty candy boxes on the ironing board.

JD: I think that maybe they will help me be organized because then I put stuff in them, but some people use filing cabinets.

HARNETT: And this box?

JD: That makes complete sense, that's for scarves. I've been here since May and they didn't give me enough drawers. I mean, they aren't my boxes. I dragged them out of the garbage. But other people are stupid and they're throwing things away! I like shelves because I like all my little tchotchkes. I'm big into comfort. I want all my stuff near me. My ideal car would be a steering wheel and then just shelves all around it. So when I found that in the garbage I was like oh my God, that is awesome!

JD’S pointing at a big styrofoam packing piece that she got off the street in L.A. When she was a kid, her father would take her to the dump and let her pick up stuff to bring home.

JD: My parents grew up during the depression so they were taught to never to throw anything out, 'cause you might always need it.

Hoarding often runs in families.

TAMARA HARTL: Recently, some studies have indicated that 75% or more of individuals who hoard report that they had a first degree relative that also hoarded.

Tamara Hartl is a cognitive behavioral therapist who specializes in mood and anxiety disorders. She recently co-wrote the book Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring.

HARTL: There have been some genetic studies that suggest that hoarding might be linked to a specific chromosome and therefore can be passed down to family members.

The therapy Dr. Hartl practices focuses on changing the thoughts and behaviors underlying the hoarding compulsion.

HARTL: It is really quite a diagnostic quandary right now. A lot of times it gets lumped into Obsessive Compulsive Disorder as a symptom of OCD. It is often co-morbid with a huge variety of other conditions including depression, social phobia, eating disorders even. So it really runs the gamut. So people are starting to look at hoarding as a syndrome or condition in its own right, and not secondary to something else.

JD: I was taught to never throw anything out. And then on top of that we were in entertainment, and once I started doing like costumes and props...

JD moved out of her parent's cluttered house at 17. She went on to work on cruise ships, as a Madonna impersonator, and in various burlesque shows. Those old props -- the wigs, make-up, and costume pieces -- are all over the hotel room. Her creativity is evident in how she uses other people's trash -- making it into shelves, storage units, or even picture frames, like she's done with the clear, plastic container lids lying on her bed. Dr. Hartl says she often sees this kind of ingenuity with her patients. In fact, conditions like OCD are linked to high IQs.

HARTL: It is my experience that people who hoard are incredibly bright, incredibly artistic and creative, and their creativity is in part what gets them in trouble, because when they look at an item or an object their mind runs away with itself in terms of how to use that object and what need it could fill. And it is a skill that they have, it is just that it can be turned against them.

JD: The 99 cent store is pretty bad, but that's not my downfall. My downfall are thrift stores. There will only be one of one thing, and if I don't get it, I will be obsessed with it. I don't have a lot of regrets about stuff I did buy, because I can always get rid of it.

The problem is, JD doesn't get rid of it.  She keeps it, along with the packaging it came in.  

JD: I have this thing about boxes. That is kind of an OCD thing. I save boxes, like when I buy a new appliance, because I am convinced it is going to break.

Deciding about whether or not to save packing material became so stressful she stopped opening the boxes altogether.  She hasn't stop buying things, though. In addition to the hotel room, she has five storage units filled to the brim.

JD: I always intend to buy it and sell it back on eBay, but I just get to the buying part. In here is a Coach bag, and over there on the kitchen counter is a Coach purse. I got it in a thrift store for half off of $20. I am going to sell it on eBay... someday. But I don't ever have a clear space to make a little display to take a picture of the stuff to sell.

While she hasn't successfully sold anything on eBay, she does talk about giving her things away.

JD: The cool thing about being a hoarder is that you can just go Christmas shopping in your house!  So, I've pretty much got presents for everyone anyway.

JD is self-deprecating, witty, and hyper-aware of her situation. She says she's the girl from Sylvia Plath's Bell Jar, a novel stacked on her heater, and tells me half-jokingly that I should create and sign her up for a hoarder's dating service. A week earlier, she says, a guy came over, and she had to wait outside while he used the bathroom, because they couldn't get the door closed. With the exception of her cousin, Kari Peterson, she's had little success with organizers.

JD: I tried to work with one once and she was really mean to me. She tore up half my house and then she and her assistant decided that they were mad that the air conditioner wasn't working and so they left after they made a big mess.

While the hotel room is not yet in critical condition -- the plumbing and electric still work -- Peterson sees many areas where she could help.

PETERSON: My approach would be to try and make this a little bit healthier as far as a place to sleep, a way to access things, and also look at the safety side. So for example, being able to open and close the doors easily and get out if there were an emergency.

There are some dangerous signs in the room -- the windows are partially blocked, walkways are cluttered, and the bathroom is not readily usable. Peterson says the first hands-on step is to rework storage spaces.

PETERSON: My suggestion is generally to group similar items together, but I will paying special attention to the placement that she has placed here.  Because there have obviously been very deliberate groupings of certain types of things together which may not be clear to me as far as why they are there together. The biggest thing is to have the individual calm and okay and on board with the process. If I am working with somebody in their environment, I will not throw anything away without their permission. If I, for example, pick this piece of candy wrapper off the ground I will not throw it away. I won't say "This is trash right?" I will say, "Is this something you would like to let go of, or something you would like to hold onto?"

Going through every wrapper requires immense amounts of patience and work, which is why Dr. Tamara Hartl says family and friends are incredibly important. They can continue where professional services can't, and can help maintain connection to the outside world.  

HARTL: What that is, is essentially creating a program for the person in your life who hoards, where the goal is not to de-clutter and reduce as much clutter as possible, but rather to keep the person safe.  

Hoarding isn't something people readily open up about. Hartl says shame and fear are the two biggest barriers to treatment.

HARTL: Seeking help means an opening up of their actual house, their condition, and a big part of their lives. A lot of time people who have opened up in the past have been punished for doing so. They have gotten those sensationalist reactions, or the reactions of disgust from people they have let in. That is why, even when we do estimate hoarding at 4 or 5% of the population, that may be a low estimate, because people may not be openly disclosing this as a problem because of the shame that they associate with it. And that is a hurdle to get through in order to engage more people in treatment.  

Hartl says treatment requires therapy, pharmaceuticals, and frequent, long-term, hands-on work. Family and friends often become exhausted by slow progress, and health insurance plans usually don't support all aspects of the treatment. While increased exposure has helped call attention to the condition, a consistently successful treatment plan has yet to be found.

In Belmont, I'm Sam Harnett for Crosscurrents. 

This story originally aired on February 22, 2010. For more information about the diagnosis and treatment of hoarding, visit the San Francisco Bay Area Center for Cognitive Therapy, the International OCD Foundation, or the National Association of Cognitive-Behavioral Therapists.