Living With Squalor Syndrome, an Actual Condition

This article originally appeared on VICE Belgium.

A decade ago, Bastien, 43, was the type of guy who would meticulously clean his window sills with a cotton bud. But after experiencing a triple whammy of unemployment, a tough break-up and severe depression, his dedication to cleanliness collapsed.

“I couldn't throw anything away; I started piling up rubbish left, right and centre,” he says. Trash quickly took over his flat. Eventually, he couldn’t take the bins out anymore because of the sheer amount of stuff piled up next to the front door. “I started leaving boxes everywhere and soon I couldn’t get into my kitchen,” he says. “That’s how I ended up eating cold meals for two years.”

Bastien later came to understand his behaviour as a form of Diogenes syndrome, which is also known as ‘senile squalor syndrome’ as it usually affects people above the age of 60. It’s uncommon – around 0.5 per 1000 of those aged 60 or over suffer from the condition – but can have devastating effects on a person’s health and social life. Its main symptoms are extreme self-neglect, apathy and complete withdrawal from society. Because of the stigma associated with the condition, Bastien isn’t using his real name.

Squalor syndrome is similar to hoarding, in that people who experience it live in cluttered and unsanitary spaces. However, it doesn’t involve the same compulsion to accumulate objects as hoarding, or a resistance towards getting rid of them.

Bastien lived in this situation for eight years before reaching out for help. Eventually, a local charity helped him work through his shame, clear his apartment and get back to normality. Although that seems like an unbelievably long time to live in such a deprived state, denial is a fundamental symptom of this condition and people typically tend to seek support after many years of struggling.

“I was completely secluded for eight years,” says Bastien. “When someone would turn up at my place, I would turn down the TV so it sounded like I wasn’t home. Before going out, I’d listen by the door to make sure no one was in the corridor. There was no way I could let anyone see my flat.”

He was isolated, but he still desired romantic connections and had three relationships during that dark period. “I’d turn up at their place on the weekend, all clean and dapper with my little backpack,” he says. “I was all happy and hyperactive, I’d get involved in social activities... They would never have imagined that my apartment was full of rubbish.”

He made sure to never invite any of his girlfriends over to his home on the outskirts of Paris, and when one of them travelled all the way see him, he made up an excuse and bought them a night together at a hotel.

“I admitted [to one of my girlfriends] that my flat was an unimaginable mess, but I never accepted the help she offered me,” he says. “It would have been too humiliating. I wouldn't have been able to look her in the eye ever again.”

In the long run, his categorical refusal to invite anyone over haunted all of his relationships and doomed them to failure. One of his girlfriends left him because he wouldn’t let her see his home, and he broke off the other two relationships once he felt backed into a corner. They all lasted less than a year.

Paris-based psychiatrist and geriatrician, Laurence Hugonot-Diener, has helped hundreds of patients living in squalor. She vividly remembers one particular female patient in her 40s.

Hugonot-Diener had started working with her just as the patient began dating someone new. “She had dozens of cats in her studio, but a third of them were dead,” Hugonot-Diener explains. “We had everything cleared by a company, and every time one of the cats was taken away, she’d cry.” Despite the intensity of the experience, the woman was eventually able to get her flat back to normal and invite her partner into her home.

While there is little research into the emotional and sex life of people living with squalor syndrome, Hugonot-Diener confirms that most of them struggle to form or maintain relationships. The few couples she meets often fall into two categories: “Either the partner hasn't accepted the severity of their situation and doesn’t see it as a problem; or they have and come looking for help,” she says. “In that case, I am seen as a lifeline in the relationship.”

Sometimes, love can prevail over mountains of trash. Retiree Patricia, who asked to use a pseudonym, lives with a partner who compulsively hoards objects and is still in full denial. The couple have a 25-year-old son together. When Patricia met her partner, he’d already been struggling with hoarding for some time.

“His flat had layers of dirt everywhere, and he had all these useless items he’d found and bought, all piled up,” she says. “Old socks, ashtrays – even though he doesn't smoke – postcard display stands... He can't stand any object being thrown out, so he keeps everything.”

Ever since moving in together, Patricia has watched her living space grow smaller each day because of her partner's possessions. His condition weighs heavily on their daily life and they constantly fight about it. When they go on holiday, he insists on driving so he can stop at different thrift stores on the way to find more objects. “When I see him come back, I get overwhelmed with anxiety,” says Patricia.

“He can't stand being in an empty space, even a small one, so he fills it up immediately,” she says. Sometimes, things get too much for her and she moves out for a few days. “It's very distressing for everyone around him – we associate his clutter with a feeling of suffocation, which we then project onto him,” she says. “Sometimes, his presence suffocates me.”

Patricia and her partner have come up with an elaborate arrangement, which involves periodically moving some of his objects into two other houses they separately inherited from family. But Patricia often worries about the inheritance she’ll leave her son when his father passes. “Sometimes I tell him, jokingly: ‘Just wait until there’s no one around and set fire to your grandmother’s house’,” she says.

Both hoarding disorders and squalor syndrome can be treated with different therapy tools depending on the context. The problem is, of course, it’s always down to the people experiencing these states to seek help. “If the person doesn’t acknowledge they have a problem, there is no point in insisting,” says Hugonot-Diener.

If they do accept they need help, specialists can begin the painstaking work of tearing down the piles of physical and mental waste that have trapped them for so long. “We can tell them that we want to help them get better. And we can make specific plans, such as keeping one or two rooms in the house free of any hoarding,” she says. These are the crucial first steps in the long road to recovery.