The complex path of agoraphobia: ‘After a life limited by fear, you can manage to forget about it’

Águeda González had her first panic attack at the age of 18. From then on, it was only a matter of time before she was confined to her home.

“I started putting off doing things for fear of experiencing panic, and the more I reinforced the cycle, the more anxious I felt,” she laments.

She eventually wasn’t able to leave her house unless she was accompanied. Her condition reached the point that she wasn’t even able to be at home alone. Her only concern was avoiding anxiety and fear. “When I was a child, I already had agoraphobic behaviors. I never went to my friends' houses to play, or on outings. I couldn’t spend too much time without my mother,” she recalls. Then, from the ages of 14 to 18, she experienced a kind of respite in which she felt anxious, but it didn’t stop her from doing things.

Anxiety disorders affect more than 300 million people worldwide, according to data from the World Health Organization. Of these, between 1% and 1.7% suffer from agoraphobia, with agoraphobia being up to twice as common in women as in men, although there’s no clear explanation for this (although cultural factors, upbringing, or unequal caregiving burdens have been cited).

The true definition of agoraphobia falls short of the literal meaning that usually accompanies the word. This is because — far from implying a fear of open spaces — it’s actually a fear of fear itself.

“A person with agoraphobia is afraid of a sensation and avoids places or situations from which it may be difficult to escape, or from which they may not be able to receive help if a panic attack occurs,” explains Rubén Casado, a psychologist specializing in anxiety. He’s also the founder of the Madrid Agoraphobia Association (AMADAG), which emerged from his own personal experience with the disorder. People who experience agoraphobia are those who have had a traumatic experience with a panic attack; that is, they’ve experienced a situation in which they suddenly felt that their own symptoms were dangerous.

To get to this point, a person has usually experienced intense, sustained anxiety. The first manifestation of this anxiety is a panic attack, which explodes like a volcano, triggering extreme anguish. Finally, agoraphobia is the rejection of the anxiety experienced and the attempt to avoid experiencing it again.

“In some way, the person begins to fear themselves after this experience,” the psychologist points out. A cycle is established, in which the person begins to fear their own reaction to fear. Hence, they try to seek refuge in external aids, be they people, places, objects, or rituals. For example, checking if there’s a hospital nearby when visiting a new place.

Shame and misunderstanding

González felt supported and understood by those closest to her, but she didn’t tell her extended family or friends. “I always had a good excuse for not doing the things they suggested. And I felt that I couldn’t do anything. I experienced [my condition] as a kind of shame that I had to hide from others. You become very skilled at trying not to let it show,” she notes.

Casado believes that it’s not helpful to live in a society that rewards productivity and follows standards that are based on the notion of “anything is possible.”

“There’s been a lot of publicity about anxiety, it’s talked about a lot, but it’s still not fully understood,” he says

Anna García has suffered from agoraphobia for more than three years, but she’s also been dealing with generalized anxiety disorder (GAD) for 20 years. Agoraphobia appeared at the best time in her life: she had a job she loved and a close-knit family. She felt that she had achieved her dream of stability.

However, it was at that precise moment that agoraphobia set in, and she didn’t really know what was happening. “I started suffering from dizziness, fainting… I lived with a constant feeling of insecurity and fear,” she sighs. For months, all she wanted to do was sleep to avoid suffering. Her fear of falling down the stairs was so intense that she could barely manage in her own home.

“I spent four months practically living in the dining room. I needed someone always near me, even to take a shower. Every day was hell,” she recalls. The hardest part for her has been the lack of understanding and prejudice she’s encountered. Her family was her lifeline, especially her mother, her children and her sister.

Patient associations can become a source of support. The Spanish Association for Mutual Aid against Social Phobia and Anxiety Disorders (AMTAES) offers a community and resources to lean on. Its president — Enrique Vargas — points out that people who come to the association often struggle with social misunderstanding and find that AMTAES is a safe space to express their feelings. “Peer support is often a very useful tool for the recovery of those affected,” says Vargas. AMTAES hosts meetings and gatherings through a network of mutual support groups.

“The patients can be helped and — at the same time — they can help others, which gives new meaning to their lives. They feel part of a group, and they feel useful by sharing their personal experiences with others. And they also improve their social relationships,” Vargas affirms.

He adds that it’s important to make this reality visible, so that society understands the scale of the problem and that specialized, free psychological care programs are implemented by public administrations.

For Casado, this visibility comes through awareness, but not just any kind. “Awareness has helped to better understand these disorders, but their simplification and popularization by non-experts also leads — in many cases — to overdiagnosing, or even underestimating this problem,” he explains. The psychologist believes that this can overwhelm clinics with milder anxiety cases, leaving more serious cases without resources.

It took Águeda González a long time to figure out what was happening to her. “The psychiatrist simply gave me medication. And today, if it’s difficult to access a psychologist through the public healthcare system, imagine what it was like 35 years ago,” she laments.

She then went to a private clinic and managed to make some progress, but the fear didn’t completely disappear. When her second daughter was born, the panic attacks returned with a vengeance. It was then that she found the AMADAG association, which allowed her to meet other people whose lives were being affected by agoraphobia.

“I went to support groups. A coworker would accompany me there, because I couldn’t go alone. My husband couldn’t miss work to accompany me. Afterward, though, he would pick me up. And so, we continued doing this for several years, until I was able to travel there and back alone, by subway.” It had taken Águeda 10 years to be able to take the subway alone again.

Beyond cognitive-behavioral therapy

Uncertainty is the hurdle for people with agoraphobia. The human brain is programmed to survive, and certainty is one way to control the environment.

According to Casado, people with anxiety are more prone to uncertainty. “If you look closely, anxiety isn’t actually the problem: it’s the attempt to solve the anxiety — the uncertainty — that’s the problem.” Avoidance is a way to escape that uncertainty: if you avoid the situation, you don’t feel what’s causing it: “If we take the subway and suffer from a panic attack, we’ll avoid the subway so as not to experience that feeling again.”

According to this expert, cognitive-behavioral therapy is very effective in treating agoraphobia. Regarding the disorder itself and its mechanisms, he believes that resources such as exposure therapy and emotional dialogue are especially useful.

However, he emphasizes that, most of the time, when a person comes to a consultation, they don’t come with a disorder, but with a certain lifestyle. “This is the difficult part: facing a way of life that the person may have been maintaining for decades, which has caused this disorder. The challenge is being able to change it.” Here, emotional, economic and family resources — as well as personal work — play a leading role in achieving this change.

Águeda says that she barely remembers those years when fear ruled her life. “It’s been more than 17 years since I discovered that it was possible to start living again.”

When asked what a person suffering from agoraphobia needs, she replies: “They need understanding and therapy to overcome it. No matter how many years you’ve lived a life limited by fear, you can manage to eventually forget about it,” she replies. Anna — who launched a podcast to share her experience and give a voice to others who suffer from agoraphobia — is still going through this process. “Although I no longer live as limited as before, I’m slowly working on my inhibitions and adapting my life to my new circumstances,” she explains.

While she no longer lives locked away in the safety of her home, some days, she’s still afraid to go out, or be in crowded places. “Agoraphobia isn’t something that’s cured overnight, but I’m learning to manage it better. I’m not the same Anna now: instead, I’m trying to be more conscious about what I’m capable of,” she concludes.

Translated by Avik Jain Chatlani.

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