What I Wish People Knew About My Life With Agoraphobia

There are a lot of misconceptions about agoraphobia. I’m sure you’ve seen the Lifetime movies or have read about the fictional characters who can’t step foot outside their front door. Some can’t even open the door. Of the 0.9 percent of Americans who had agoraphobia in the past year, some are stuck within the confines of their homes — but not everyone. I am the latter.

First, let’s look at the medical definition of agoraphobia.

From the DSM-IV:

Anxiety about being in places or situations from which escape might be difficult (or embarrassing) or in which help may not be available in the event of having an unexpected or situationally predisposed panic attack or panic-like symptoms. Agoraphobic fears typically involve characteristic clusters of situations that include being outside the home alone; being in a crowd or standing in a line; being on a bridge; and traveling in a bus, train or automobile. The situations are avoided or else are endured with marked distress or with anxiety about having a panic attack or panic-like symptoms, or require the presence of a companion.

I get why people in my life don’t understand this. I haven’t always been this way. I used to go to movies, to dinner, to my family’s homes. I don’t know what my trigger was with this disorder. A few years back my bipolar depression and obsessive-compulsive disorder (to which agoraphobia is closely linked) started getting worse. I also put an abrupt end to my alcohol abuse. Perhaps it was one of these things, or perhaps all of them combined, with quite possibly a genetic predisposition. All I know is something inside me changed. It was like a switch was flipped. Inside me grew a fear of living.

It started with not being able to leave the home on Sundays out of fear a tragedy would occur. I was convinced something bad would happen. This was my OCD controlling my brain. Eventually it became every day. I stopped grocery shopping. I started turning down dinners and family events, including major holiday get togethers. I stopped going to events at my son’s school and used work as an excuse. My home and work became my comfortable prison cell. I’d go to the office, I’d come home. Once I was in, I was in, whether it be for the day or for the weekend. When I felt able, my husband would drive me to the store to pick up groceries from a kiosk which I have ordered online. I ride with him as work allows to drop off and pick up my son from school. This is still how I live now.

When I am faced with going somewhere outside my comfort zone, especially without my husband, I feel frantic. I am terrified I am going to have a panic attack. Panic attacks for me aren’t pretty. Are they ever though? I sob uncontrollably and can’t breathe. My legs go weak until I sit where I once stood. I get dizzy and develop paresthesias which is the sensation of pins and needles and numbness on my face and often one or both arms. The panic attack also often induces an asthma attack. Sounds super fun, right? It’s embarrassing. I feel ashamed. I feel guilty for subjecting my family to this. I have to try to convince myself this is not my fault.

I work through this with a combination of medication, psychotherapy and cognitive behavioral therapy. I keep anxiety medication with me at all times as well as an “escape plan” in case I get into a situation where I feel trapped. Some days this is enough for me to drive home without tears, some days it isn’t. What I do know is I won’t give up.

What I need my loved ones to understand is that I haven’t given up. I work every single day to improve this situation with the hope I have more yes’s than no’s. I need them to know I can’t “suck it up.” I can’t “just breathe.” I want them to know that if I don’t participate in something, it is not a reflection of how I feel about them. I don’t need them to try to fix it for me. I don’t need them to “talk me off a ledge.” I need them to sit down on that ledge with me and just be there. Try to be as understanding as you can. Don’t try to guilt me for staying home. Trust me, I have felt far worse about myself than they could, said far worse about myself than they can imagine.

For now, all I can do is keep fighting. For myself, for my family and for those afflicted with agoraphobia, in hopes they too can be successful and gain some understanding and patience from those they love.

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Lead photo via dinachi