Need to know
Quarantining after the COVID-19 pandemic began was a shocking disruption to life, but it wasn’t new to me. I’d been quarantined before, unable to leave my apartment, or bedroom, or bed, for days or weeks and, once, for months. I was prisoner to couches, living rooms and bathrooms many times before, hiding from a dangerous world.
I was first diagnosed with agoraphobia as a complication of panic disorder in 2015. After more than a decade of panic attacks outside of the home – in the classroom, at the grocery store, in the car, on the subway, at the gym – I started to associate leaving the house with panic. So, to avoid the panic attacks, I wouldn’t leave the house at all. One by one, I gave up things I loved: yoga classes, teaching, a coveted job at a magazine that I’d spent months applying for, dinners with friends. When you avoid something you fear, you feel immediate relief because you’ve escaped what you believe was causing your panic. But, like a drug, you need more and more avoidance to maintain feelings of safety, and your world gets smaller and smaller.
So the first weeks of quarantining in 2020 came as something of a relief. ‘It’s the life I’ve always wanted,’ I joked to my husband. Childcare was cancelled, so I spent most of my time with our then one-year-old and my husband. My teaching moved online. We existed in our backyard and living room, had our groceries delivered, drove nowhere, saw no one. I’d never been able to relax into a quarantine before, because previously, they were self-imposed, coming from disorder, and something I had to work through to resume a functioning life.
Agoraphobia is defined by the US National Institute of Mental Health as a type of anxiety disorder that causes ‘intense fear and anxiety of any place or situation where escape might be difficult’. The fear is so intense that we agoraphobics avoid those situations even though it shrinks and then decimates our lives. People with agoraphobia avoid places they might feel trapped, helpless or embarrassed if they needed to leave, like in line at the supermarket, in the dentist’s chair, in traffic, or in tight spaces, like elevators, movie theatres and crowded stores – all places where I’ve panicked several times. Buses, trains and planes also pose a problem for many agoraphobics as, once they get on, they are not in control of when they get off.
Perhaps you have come to this Guide because you’re experiencing some of the symptoms I did. Maybe you’ve had panic attacks in certain places and that has made you want to avoid going there in the future. Gauri Khurana, a psychiatrist and clinical instructor at Yale University School of Medicine, explains that, while agoraphobia is often associated with a fear of crowded spaces, ‘to those who suffer from it, it is more a fear of having anxiety or a panic attack, and avoiding anywhere that has occurred or might occur. People who suffer from agoraphobia feel trapped in their homes because leaving, or even the thought of leaving, triggers symptoms of panic, like trembling, dizziness, nausea, diarrhoea and dissociation. Home feels like a safe space when nothing else in the world does.’
Agoraphobia is estimated to affect about 1.5 per cent of adults at some time in their lives. It commonly co-occurs with panic disorder, another type of anxiety disorder, though it can also occur on its own. The disorder typically starts in the late-teen and early adult years, usually before age 35, with a median onset of 20 years old. I was 30 when mine started, but 35 when I was finally diagnosed. Like other anxiety disorders, agoraphobia is more common in women than in men.
‘Classical conditioning happens with anxiety disorders [such as agoraphobia],’ says Karen Cassiday, a clinical psychologist and managing director of the Anxiety Treatment Center of Greater Chicago. ‘For example, if you panicked on the highway, you then associate the highway with panic and think, If I get back on the expressway, I might feel the way I did before – and so you avoid it.’ She notes, ‘it’s very common for someone to start avoiding the places and situations where they’ve panicked because they think the situation causes their panic, as opposed to their panic hijacking the situation.’
There was a time when giving up my life outside the walls of my Manhattan apartment seemed like a fair trade for evading the abject terror that swallowed me when I left – the dry-mouthed, shaking-muscled, world-spinning derealisation of panic attacks. My best friends brought food and books, lay with me in bed when I couldn’t be alone. It took years of therapy and medication to free me from that paralysed, self-quarantined state. It is hard, constant work, and I used to wish the world would shut down along with me so I wouldn’t have to wean myself back onto it.
But after the world finally did shut down, and a few months passed, I surprised myself by saying to my husband, while we cuddled on the couch in a Fanta-orange sunset: ‘I miss the world.’ I missed taking our baby to the library’s story hour. I missed running to the store, even though it made my stomach cramp and my head spin. I missed the static shocks we’d get sliding our baby down the plastic slide on cold mornings at the playground. I longed for the traffic, the children, the hordes of people eating ice cream on the sidewalk – everything that used to give me anxiety and panic, I wanted to see again.
Tackling re-entry into the outside world can be daunting for someone with agoraphobia. As Cassiday says: ‘We’re hardwired to avoid things that make us uncomfortable, so it makes perfect sense that we avoid places we’ve panicked.’ But what’s important to remember is that ‘in trying to avoid the scene of the crime, we accidentally reinforce the fear and make it worse.’
If this sounds like your experience, know that, while agoraphobia is an overwhelming and debilitating condition to have, it is eminently treatable. Cassiday estimates that, with proper treatment, it is possible to resolve agoraphobia symptoms within a matter of months. In facing your anxiety, she says, ‘the key is to stop avoiding and to reclaim the territory anxiety has stolen from you.’ In the rest of this Guide, we’ll look at the steps you can take to recover lost ground.