“I would have starved to death rather than go outside”: Mark Brown speaks with people who have felt imprisoned in their homes
Going out seems like the most natural thing in the world for many of us. Coat on, quick check of the pockets; wallet, keys, phone; then out of the door.
Of course, even the most sociable people have days when the rest of the world seems too much – and the best answer to that is a comfortable day in front of the telly with the curtains drawn. But what if the world seemed so unpredictable – and so scary – that a weekend at home turned into a month or a year?
In a world that puts so much emphasis on being sociable and busy, it can be easy to overlook the people who drop out of our lives. We don’t usually see or hear from people who feel like they can’t leave their homes because of their mental health difficulties. The people I spoke to for this article told me of days that felt aimless, of a world that seemed to get further away, of home feeling like a prison they’d made for themselves. They spoke of frustration and of feeling life was pointless. They worried that no one would even notice if they died.
“My home was like a super cell that was unable to be penetrated,” says Pete, who says he was diagnosed with paranoid schizophrenia in 2010. “It was a safety barrier between me and the outside population.”
Pete hears voices, which at times have made him too scared to leave the house. “The voices would say that people knew what I was thinking,” he explains. “I believed that when they heard what I was thinking they would turn on me and attack me physically and verbally. I literally couldn’t get out of the house for the fear of this happening. I didn’t open the front door unless I knew who it was that was coming.”
For Pete, finding support from local services during this period was difficult. He had to stop attending his local Hearing Voices group, an important part of his well-being. Pete was lucky he had friends and family and the support of his local church to rely upon, even if the voices made him feel suspicious of them.
“I had to have family bring me food and supplies to keep me going indoors. I would have starved to death rather than go outside.” Pete’s paranoia lasted for months at a time, though he’s feeling better now. “I actually fear the thought of it coming back.”
Pete’s experiences of paranoia may be extreme, but many people feel intense panic and fear at the thought of being in public. Often referred to as agoraphobia, the condition was first named in 1871 by a Berlin psychologist called Carl Otto Westphal.
Westphal recognised in four of his male patients a pattern of anxiety that took hold when they were about to set off to travel through a space where they would feel exposed or where it would be difficult to leave. One of Westphal’s patients would experience heart palpitations when he had to get on a bus, or visit the theatre, or simply walk along an empty street. Some of his patients drank to get over their fear and panic.
According to charity No Panic, agoraphobia probably affects about half a million people in the UK, with up to seven million people experiencing elements of terror about public places to a lesser or greater extent. It’s thought men are as likely as women to experience agoraphobia, but are less likely to seek help for it.
Sometimes it’s something that happens to us when we are outside that later develops into an absolute fear of leaving the house.
At university, aged 20, Jade (not her real name) found that her pre-existing experiences of social anxiety flared up after another health condition led to her waking up in an ambulance. A number of grand-mal epileptic seizures in public made her feel terrified to be outside at all.
Studying for a final year of a degree, she found that she couldn’t face going out and couldn’t even face seeing her housemates. For a year she avoided people and the outside world as much as possible, having to beg friends to bring her food, but closing the door in their faces.
“It was a continuous, visceral, feeling of self-loathing and disgust. I felt like the world would be repulsed by me,” she says.
“I lived with three other students I didn’t know well. Because they were largely out during the day, I could pretend I had been too,” she explains.
“I never particularly found home comforting. I just found the thought of anyone seeing me sickness-inducing. I felt grotesque and I was convinced that if anyone saw me I would be verbally attacked, stared at, or just generally rejected and ostracised.”
Jade’s year of isolation wasn’t pleasant. “People who have never experienced crippling anxiety think that people who say that they cannot leave the house don’t want to or have a desire to stay indoors,” she says. “This couldn’t be further from the truth for me.
“I was insanely bored. I am the kind of person who needs a lot of stimulation. How could I work if I couldn’t leave the house? Would I never have a friend or a relationship again? How could I ever cope, if I couldn’t even face my own family, for fear of being inadequate? I felt inhuman, invisible.”
After Jade graduated she got an offer for a job she applied for “in the hope that one day I’d escape my prison.” When the day of the interview came, a friend accompanied her and she was offered the job on the train home. “I didn’t leave the house again until my first day.”
Jade lives alone now, but through choice. Looking back on her time not going out she says: “I became convinced that the outside world wouldn’t want to engage with me. Eventually, it became a self-fulfilling prophecy and I would shut myself away for ‘others’ sake’.
“The longer I spent alone, the more my identity disintegrated and my existence felt irrelevant at best, burdensome at worst.” She worries about slipping into her old ways, but has rediscovered her hobbies and interests as well her career (she now thrives in the job she was offered).
Ria is in her thirties and has experienced mental health difficulties for most of her life. “Four or five years ago”, she became agoraphobic after a distressing experience of being threatened and stalked.
“Outside felt very unsafe to me,” she says. Things got worse when she lost her driving licence for medical reasons. “Losing that just shut down my world.”
“I’m this tiny little unit but it’s not connected up to anything else,” she says. “It’s very frustrating. I feel like there’s things I want to do in the world that I can’t do.”
Recently, Ria was sectioned, and she says that feeling her world was getting smaller and smaller contributed to that. “It was like ‘if I’m just going to lie here, if this is it now, then I might as well be dead’,” she says. “Finding meaning in my life every day is difficult and I just got to the point where I couldn’t do that anymore.”
Ria says that the government’s attitude to those claiming disability benefits has made it harder to go out for fear of the disability her mental health causes her being questioned. She’d love to go back to university.
Most of the people I spoke to for this article still had friends and family to connect them with the outside world when they couldn’t go out, but one person who got in touch with me via Twitter was completely alone. When we spoke on the phone they were cheerful to begin with, putting a brave face on their life alone in their flat.
“You get used to it after a while and you forget that it’s not normal,” she told me. “You see something on the telly when they say ‘I haven’t spoken to anyone all day’ and I think ‘hang on it’s about six weeks since I saw or spoke to anyone’.”
A civil servant by profession, my interviewee speaks of her life as a “series of unfortunate events”. She was signed off sick with long term physical and mental health difficulties two years ago after a period of intense bullying. We had to stop speaking for a moment as she found herself surprised to be close to tears.
“I’ve always loved my flat,” she told me. “I worked hard to be able to buy it. It’s always been my safe space. But because I haven’t been well I haven’t been able to look after it so it’s horrible now. It’s my prison as well as my safe space. It’s a prison I don’t know how to escape.”
“People disappear,” she said. “You text people and you phone them and nobody answers.
“When I have to go into hospital I have to make up a name and address for next of kin because there’s nothing else to put.”
For this individual, financial insecurity combined with anxiety, depression and Post Traumatic Stress Disorder makes the outside world seem further and further out of reach. “It’s not a choice,” she said.
“It’s difficult to find a way back. Sleeping, watching telly, messing about on the internet is basically my life. I hate it and I don’t know what to do about it.
“How have I arrived at this point in my life when Stalin, Hitler and serial killers have friends who missed them, how can I not have a single person in the world who’d notice if I’d died tomorrow?” I didn’t know what I could say to help.
One thing all of the people I spoke to told me was that it was hard and embarrassing to reach out to people to come and see you at home, even if people are the thing you need most to help you ease back into the world again.
Often our friendships as adults last for years without ever visiting each other at home. We’re far more likely to know someone’s mobile number or their social media handle than we are to know their address.
Many of us are only a few missed connections or bad experiences from finding ourselves alone. Having problems with your mental health can mean you fade into the background of people’s lives. The pressure to explain where you’ve been can be enough to stop you reaching out. Think about that mate that doesn’t come out anymore. Or that person you’ve not heard from for a bit who went through that bad break up. Or that friend you’ve lost touch with since they moved jobs or got made redundant.
There’s an old joke that one of the worst things you could do to a British person is drop in to see them unannounced at home. Perhaps that’s right, but if there’s a person no one has seen for ages, maybe dropping them a line or text to ask ‘how’s it going? Fancy a chat?’’ might be one of the most amazing things you could do today.
The NHS has a list of sources of help and advice if your mental health is causing you difficulties. If you have been affected by any of the issues raised in this article please contact the Samaritans helpline on 116 123.