Friday, February 23, 2018

Cluttered pearls: The stigma of hoarding

January 24, 2013 by Jean Oliver, contributing writer

Oh, how the world loves a freak.

Call it what you like: collecting; hoarding. The way we look at someone whose space has filled up with stuff is judgmental. It has long mystified me that many are not able to see this behaviour as a serious emotional illness. But attitudes are beginning to change.

The most notable stigmatizing culprits are the reality TV shows on the subject, exploiting suffering by triggering our survival-fascination with the train wreck. I’ll admit, I watched the shows early on. I saw the hoarder as brave, and the helping agencies as noble. It all seemed justifiable, in a lab-rat-sacrifice kind of way. But the blame was one-sided, with the intricate interaction of the enabling family, partner, or friend completely ignored. Eventually I was learning more about what not to do to help. And worse, by tuning in each week I was contributing to stigma.

“Enabler,” “hoarder,” “martyr,” and “saviour” are common archetypal labels we love to use, but are not useful in helping someone face a loss.

I’ve helped 18 people (“people,” not “hoarders”) with their “grief” (not their “hoard”). I use the word “nest” instead of “hoard” when it helps with understanding. These labels are unfair if not applied equally because there are elements of all of these tendencies in each of us. It only takes a special set of circumstances for behaviour to appear that has a negative effect on everyone involved.

 

GRAINS OF SAND

 

Hoarding, by definition, is a supply of valuable things stored for future use. But in this context, the so-called hoarder doesn’t have any future use for the collection, nor do they accumulate consciously.

But the persistent wisdom is to treat as if this is so. As if experts have only observed this condition from afar and not from a grief perspective.

The need for less distance between the person and the treatment is why the peer-support approach is beginning to make a difference in long-term mental-health care. Wendy Mishkin, who worked as coordinator for the Peer Support program with the Victoria branch of the British Columbia Schizophrenia Society and is currently on leave, describes herself as having nesting tendencies.

“This tendency shows most in my collections, and my general trouble with making decisions and letting things go when I am not well,” says Mishkin. “Severe anxiety and mood disorders run in my family, and ‘nesting’ is one manifestation of this.”

In her work, she has seen a lot of this behaviour up close; she says she has trouble with the “hoarding” label.

“The term ‘hoarding’ has entered the public consciousness in a good way, as well as in a negative one,” she says. “When we’re having an illness of any kind, things start to pile up. It’s a completely normal response.”

Think of nesters’ “stuff” as a grain of sand in an oyster. The pain is like that grain of sand, which gets layered with nacre, mother of pearl. Clearing the nest is like finding the pearl, the real person, underneath the stuff. The main difficulty is, of course, you have to first open the oyster. Then you have to destroy it.

 

HELPING THE NESTER

 

There are many kinds of nestsŃsome tidy, some messyŃand I’ve started coming up with names for each one I find.

Some are like the ones mice make, where walls and surfaces are softly layered. There’s a sort of preparedness-nest, saving things “just in case.” There’s a lost-in-the-woods one that uses a system of deer trails that lead to personal spaces. The hardest to work with are the “cliff” ones. They make a nest that is the result of a hard-wired mental-health condition. Inside their nest, the sufferer clings to the edges of their sanity, trying not to go over the cliff. But they are only, as some would say, hard to work with because they require serious and early-on intervention and ongoing help, both of which are simply not available.

As we work, the nester grows to hate me, and pushes back, hard. But the most wonderful thing always happens. They figure out there’s no way I’m the true source of their pain and they look inwards. Their anger seems to electrify and cut through their powerless-victim state of mind.

It’s important not to react to these outbursts, but also not to let them set aside the object in question “just for now,” as they tend to say. This is an object I call a plug. It represents a tough emotional block, and has to be dealt with before we can proceed. Think of how the oyster must feel when you start prying it open. Once those layers start coming off visibly in their environment, you’re in for a rough patch. The good news is, at the end, we have a huge oyster shucking.

When we come up against a plug there are considerable attempts by the nester to deflect. As they attempt to put me off, and no matter what they’ve just said, I only ever answer with one question: “ So, is it okay then to let go of this?” It can take from minutes to weeks to let go of that one thing. But it’s important not to move anything until that plug is dealt with. And this way, the nester is the one in controlŃfor a change.

A man I am working with had trouble letting go of two keys he no longer used (keys are a big, and common, problem). After 20 minutes, including his retelling me about an entire final period of a hockey game, he admitted the keys were to the home he had shared with his ex-wife, the home she got in the divorce.

You would not believe the look on his face when he finally admitted that.

 

CHANGES IN BUREAUCRACY

 

Things are changing in terms of local services for people like this. Encouragingly, the Vancouver Island Health Authority (VIHA) is making a move on hoarding. About eight months ago, Tracey Thompson, coordinator of outpatient services, and Madeline Ross, coordinator of special services, were approached by local firefighters and other concerned groups. They are now helping to coordinate with what resources there are. Thompson, who has migrated to her role at VIHA from the NEED crisis line, says that they started the Community Working Group to decide on a strategy and determine how to best respond to hoarding situations.

“Under the VIHA mandate we can assist with a serious and persistent mental-health illness,” she says. “With hoarding, this doesn’t fit, and we need a mental-health response to this problem. Is the best approach for VIHA to come up with a treatment, or is it about a community response?”

Ross, a psychiatric nurse with a background in health services and the non-profit sector, adds that there are budgetary limits on a health service, so this group is necessary.

“We need to be self-determined, not just working from an office but using peer-supported models, and help the people involved make some choices for themselves.”

Meanwhile, a world away from offices and paperwork, I sit with someone in their pile of hurt and see the look of astonishment and awakening joy on their face as they release the hold their pain has over them. This is why I do this work for them.

The evidence of healing is potent medicine. But that look is also a reminder of where I was at once, and how proud I am over reclaiming my power. This is why I do this work for myself.

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One Response to “Cluttered pearls: The stigma of hoarding”
  1. Blooming Psycho says:

    You are one of the few people who doesn’t have the “gawking at a car accident” syndrome when it comes to people with these problems. You are also one of the few who expresses wishes of helping get the problem under control rather than fixing the person with the problem.
    My current problem is twofold. First, there is the collection of items itself over time. Then there is the fact that while trying to work and deal with psych issues such as bipolar disorder and with physical issues such as chronic pain as well as working a full time job, I am now overwhelmed, even though I am more able to deal with the problem psychologically than I was in the past.
    People love to apply the word “lazy.” In truth, very few people are actually lazy, but many are overwhelmed.