There’s More to Agoraphobia Than You Think

If I asked you to imagine someone with agoraphobia, the picture most people would create in their minds is of someone who is unable to leave their home, chained by their irrational fears of the outside world. This person is visibly anxious, in a constant battle between mind and body, and experiences the world through the slits in their window blinds. Sound about right?

The thing is, you’re not wrong. This is the case for many people who experience agoraphobia. However, this extreme represents a small percentage of those living with the phobia and subsequently marginalizes a huge population — myself included — of people who struggle with the other aspects of agoraphobia.

The DSM-5 criteria for agoraphobia is basically “a marked fear or anxiety about two (or more) of the following five situations:

Using public transportation.

Being in open spaces.

Being in enclosed spaces (e.g., shops, theaters, cinemas).

Standing in line or being in a crowd.

Being outside the home alone.”

To be clear, it isn’t these situations which provide the fear or anxiety — one is not fearful of lineups or buses — it is our anticipation of interacting in them and our perception of how we are or will be perceived. That is, we experience “thoughts that escape might be difficult or help might not be available in the event of developing panic-like symptoms or other incapacitating or embarrassing symptoms.”

Until recently, agoraphobia was tied to panic disorder. That is, you either had panic disorder with or without agoraphobia, or agoraphobia without history of panic disorder. Basically, agoraphobia was the annoying sidekick to panic disorder — a byproduct of a bigger problem. Now, one can be diagnosed with agoraphobia without the presence of a panic disorder. Why is this important? Because it allowed a whole population of agoraphobics who do not experience panic an opportunity to have their symptoms appreciated in their own context.

Essentially, we are no longer being evaluated and treated based on a panic disorder. We are now being seen as individuals with a distinct mental health issue and thus (hopefully) receiving treatment that is appropriate and proportionate to our symptoms. We aren’t panic stricken shut-ins afraid of sunlight. We are victims of anxiety induced by fear of the inability to escape a situation. Not only is it the feeling of being physically stuck and thus having an incapacitating or embarrassing episode beyond our control, but more often it is the social constraints and expectations of the situations that make us feel isolated. This causes the anxiety; this causes the avoidance.

These triggering situations are different for everyone. For some, it is the fear of having a panic attack, while for others it’s the fear of small talk, or incontinence, vomiting, fainting — anything you wouldn’t want to do in a public place. The thing is, most people would probably agree that these situations would be highly embarrassing. The difference is that agoraphobics have a real physical reaction to the expectation that these things will occur and so we are constantly trying to mitigate them by controlling our surroundings.

What if I go to a friend’s house and I am there for less than 10 minutes and start to feel sick? How can I excuse myself from this situation? “Hey, it was great to see you, by the way I need to leave now.” Sounds pretty embarrassing, doesn’t it? Or imagine feeling completely inadequate in maintaining small talk in social situations. What if I see someone I know? They’ll want to chat, and I’ll definitely say something weird, then go over the conversation in my mind for the next three days. What if I’m standing in line or taking public transportation and I suddenly need to “go” — like now! How do I manage myself in this situation — “excuse me, can you stop the bus?!” Worse, what if I have an accident?

For a person living with agoraphobia, these are everyday, every hour, every minute thoughts. These are just small examples of a plethora of possible worst-case scenarios we are mentally managing every day. Sometimes, it feels easier to just stay home.

In my experience, it is not the outside world that creates my anxiety; it’s the world my mind has created and is perceiving that I am reacting to. For this reason, we often need a companion when in public — we need someone who is reacting appropriately to the situation to help guide our own reactions. We need someone to let us know we are OK or to take control of the situation when we feel it’s all falling apart.

An agoraphobic in public sounds like the beginning of a bad joke — I assure you it isn’t. The DSM-5 notes that when an agoraphobic does put themselves in these situations, they do so while “enduring marked distress.” The amount of anxiety that is created by engaging in the simple daily activities most take for granted is astronomical. Simply put, an agoraphobic in public is a person with a debilitating mental illness trying their best to maintain some semblance of a life.