Living with Agoraphobia

It has only been one year since I’ve been on Instagram. I decided to make beneficial use of social media and only follow pages that make me feel good, help me, or makes me happy. I had no idea how much good would come from that decision.

I’ve been in therapy many times. I’ve also been on medication for many years in the past. But, nothing has come close to helping me understand myself better, and accept myself as I have, then the Insta therapists and those that I have common issues and interests with through social media. And of course, my own personal inner journey.

I’ve mentioned this briefly before on a previous blog post and I’m announcing it again as my way of “coming out.” My way of accepting myself more on this recovery and healing journey of mine. My way of embracing myself fully instead of trying to deflect, ignore, and make excuses for.

I have agoraphobia.

The reason I wanted to talk about this is because I was inspired by all the people on Instagram telling their agoraphobia stories. Because it’s also highly misunderstood by many and not talked about often. I’ve denied it, I’ve hidden it, I’ve made excuses for it. Maybe my experience will help others who have it, or someone who has a loved one who also has it, can understand what it’s like to live with it.

The reason I’ve hidden this from others was because of all the negativity I’ve recieved over it. People just don’t understand it. I am able to hide it easily through being a stay at home mom. But, my kids are growing and they don’t really need me “home” so I can’t really use that excuse anymore. The truth is, I’m home all the time because I’m too fucking scared to leave the house!

I’ve had people throw it in my face with, “phobia my ass,” or, “you’re just lazy and don’t want to work,” or, “you’re weak,” or, “that’s just an excuse,” or, “you’re making it all up.” My mother-in-law even told me my daughter would never know what it’s like to have a strong woman in her life because of my issues with leaving the house. Yeah, I’ve heard plenty of remarks about how I’m a worthless pathetic human being because I can’t function as others do. I cringe when people ask me what I do for a living, or if someone asks my husband the same question. He’s told a couple of close mates about my mental illness when asked what I do and they said: “fuck that shit, I would never be with someone like that.” Ouch! I know, I know, I’m a burden and no grown-ass adult would want to have someone in their life that needs so much help. Trust me, I have plenty of my own guilt without anyone else adding to it, or making me feel worse then I already do about my very real struggles.

Luckily, my husband is very supportive. and loves me no matter what, so I have someone in my corner who understands and helps me through it, thankfully. I don’t know how much worse it would be if I didn’t have any support.

Agoraphobia is an extreme avoidance of situations that can cause panic. The meaning of Agoraphobia is fear of open spaces but it’s actually so much more than that! For me, it’s social situations that cause the most stress. The fear of being embarrassed, even slightly, in public is terrifying. Feeling like I’m being judged and scrutinized is another.

I had no idea that agoraphobia is a mental illness until, well, now. I just thought I had a huge flaw, a broken personality. I also didn’t know that it can stem from trauma, and that it’s also a survival coping mechanism and is often accompanied by social phobias and other anxiety disorders. Isolation is a normal symptom in response to trauma. I have all of the above. Diagnosed by a doctor to have social anxiety disorder and generalized anxiety disorder. I never told them about the agoraphobia because I just thought it was just me, not a mental illness, that caused me to act like that.  

In my personal experience, it’s extreme fear. Fear that affects my quality of life. Fear is the dominant feeling. Phobias are more than just being scared. It’s being petrified to the point of hurting yourself just to get away from it, or avoiding something in some extreme way.

I can’t really pin point when it all started. It just sort of came on slowly.

I was always a very sensitive child. Around age 4 my mother abandoned the family. She had her own set of issues and traumas and reasons for leaving but it affected me badly. My sense of security was gone in the blink of an eye. Shortly after, my parents divorced. Being that young it was quite traumatic for me. My world instantly changed and became very frightening. My father worked all the time so he wasn’t around much and when he was he was drunk. So I was left in the care of my 2 older teenage sisters and many different babysitters before my grandma was eventually brought in to care for us since nothing else was working.

That was scary for me being so young and going to random stranger’s houses. I was already feeling unsafe, insecure, scared, confused, and heartbroken, not trusting of anyone. Many of the babysitters were unfriendly. One kept us in a room and we weren’t allowed in the rest of the house. One even accidentally locked us all out of the house. My 2 older sisters had to take us (me and my baby sister) to work with them in order to watch us sometimes. Let’s just say they were extremely stressed out from having the added responsibilities plus dealing with the divorce themselves and it was obvious.

A few years later, my father finds a girlfriend and she then becomes my stepmother and permanent caretaker. My world changed dramatically yet again.

I never really liked her from the beginning. And it’s not because she was new, or that she was “replacing my mom,” it’s because she was cold and did things I thought were cruel and despicable. Even at an early age I quickly noticed the lying, deception, controlling, jealous, and abusive behavior. Especially towards my father. I was around the age of 8 or so when she came into my life. Shortly after, I was bound to my room.  

My sister and I then became the slaves of the house. I understand children need to contribute and do chores but this was on another level. She was as strict as they come with no love, no compassion, no kindness, whatsoever. We became responsible for 95% of the house work. If we missed one speck of dirt we had to reclean the entire room. If we missed one spot on a dish, we had to wash every single thing in the kitchen. She even made the water only hot water to scald us on purpose. If we made one mistake, even just basic human error, we were punished. The common punishment was being grounded. Grounded meant isolated to my room alone. I was not allowed to sit on the bed. Not allowed to sleep other than at bedtime. While grounded there was no music, no toys, no TV, no phone calls, no contact with anyone in the entire house. Which I understand, to a point, but the punishment was just plain extreme for the crime in my opinion. It was just pure constant isolation for months and months at a time. Just the room, and books.

Our sentences were handed out one month at a time added onto the previous months sentence. If we did something she didn’t like, grounded for a month. Got a D in school, grounded for a month (that included anything with a letter grade and I struggled in school because I had a reading comprehension problem and required additional help to help me learn). If we didn’t clean to her specifications, grounded for a month. If a boy knocked on the door, or called the house (boys were forbidden), grounded for a month! Month after month after month she handed these punishments out like candy. I spent YEARS in my room. I could go to school (a private school where every single parent of every student was a friend of hers), and my mom’s house for visitation, but other than that, in a room, alone, staring out the window. I wasn’t allowed to exist. It was obvious she didn’t want us around.

I’ll save the rest of her abuse for another day but I often wonder if in some way that constant isolation contributed to this. That, along with some other incidents that frightened me in a public setting.

One time, we stopped at Burger King for lunch after a funeral. There was a self-proclaimed gang member there that didn’t like how my father looked at him and targeted us while we were there. He threatened us, called other gang members to the restaurant, and tried to pull his penis out of pants to show me and my sister. I was terrified.

Another incident at the grocery store was worse. As we approached the entrance this lady was warning my stepmother to keep an eye on this guy hiding behind a pillar because he was looking at me and my sister in a sexual way and tugging at his pants. Back then, I didn’t understand what was happening. He followed us around the entire store. Getting closer and closer. Until he walked past us, rubbed up against us as he passed, and then my sister and I freaked out and started crying. The police got involved, he was asked to leave, and we were escorted out of the store.

As a teenager, a friend of mine convinced me to borrow my older sister’s car for a drive. She drove us to an unfamiliar area in the middle of the night. She parked the car on the side of the street and the next thing I know there is a gun in my face and some kid is saying, “give me your car!” She knew him and told him to, “stop playing.” But for a second I thought I was going to possibly die.

All of these different incidents just reinforced my feelings that the world was unsafe. I don’t know if it’s because of the area I grew up in, or what, but things like this happened all the time.

Over time, my fears just got worse, and slowly, I became afraid of the world all before the age of 18.

And now I can’t leave my house alone.

I can’t go out into my front yard, especially by myself, or walk around the neighborhood, as it feels like everyone is watching me. I can at night though. It took me years to be able to go to the mailbox without fear. I still look outside before I take out the garbage, or get the mail, and I wait if any of the neighbors are outside. If a neighbor is having a party, I stay in the house. I can drive around my small town, and go to each of my kids schools just fine alone. But, if I had to go to the store alone? Forget it! Complete panic attack!

I can leave the house as long as I’m not alone. If I have a companion, it’s as if nothing is wrong with me. When alone, it’s like a trap door opened up underneath me and I’m falling down into the black empty abyss of fear and pain.

The panic is so bad that I will forget things badly. It’s like I have sudden amnesia. I forget how to even get home. I will forget my husband’s phone number. It’s like the farther I’m away from home the worse it gets.

The bus is the most terrifying thing in the world to me and I’d rather get all my teeth pulled out than to ever ride the bus. I know it’s completely irrational but I cannot control this. If I could snap my fingers and be “normal” I would. Trust me. No one wants to be afraid of the outside world. NO ONE. No one would willingly live like this!

I can’t even make phone calls to strangers to set up appointments. I never answer my phone. I never answer my door. I especially hate eating at restaurants. I love concerts, but I will have anxiety for months beforehand, and stress the entire time, and I never go to the bathroom during a break, or be in the front row even though I badly want to be.

My life is severely limited because of these intense fears. The thing is I know their irrational. I know I’m self limiting. I know! I can’t stop though. I want to be free from the invisible shackles I have but it’s so intense and takes so long to overcome something and so easy to get set back again.

If I dig to the bottom of the fear it feels like I’m afraid of being humiliated in public. If something happens that brings attention to me in public, I instantly get nervous, I start to panic, I start sweating, turn red, and I want to run and hide. I can’t stand people staring at me, and I think everyone is out to hurt me, or judging me, or making fun of me. I dont feel safe anywhere but at home! Inside.

I’ve gotten better believe it or not. I used to never be able to leave the house even with someone with me. I would get sick to my stomach and we’d have to turn around and go back home.

I’ve lost friends because of this. I miss out on so much because of this. I want to so badly do things and I just can’t! I know I hold myself back in life. And it feels like I’m never going to get past this. I have a feeling I will be on my death bed before I realize there was nothing to fear unless I take radical steps to overcome it somehow.

No one wants to have to go through life with the challenges of agoraphobia. This mental illness can significantly diminish someone’s quality of life. It’s stressful and takes years to overcome. If you are a friend, or a loved one, of someone with agoraphobia, please do not trivialize their feelings or experiences. We already understand how challenging it is for everyone involved, we don’t need bashing we need support. Lots of it. Be supportive and build trust. Check in on them regularly. This lets them know that they are supported and that you are an ally. People with agoraphobia need, or have, a safety person. That one person, or persons, that is your safe person. They feel safe with you in any situation. You have to have patience. It’s very overwhelming for them. Even if we are masking it. You may not be able to relate to them but try to at least understand. And don’t push them. That will make everything worse and they could possibly regress in their recovery. Understand that they’re also not manipulating you nor are they weak in any way. Facing the scariest thing of your life on a daily basis takes guts! And we really are doing our best.

And if you have it as well, well… we’re in this together.

Dear friend, You are not a freak. You are wanted. You are necessary. You are the only you there is. Don’t be afraid to leave the castle. It’s a great big world out there.”

Jennifer Niven, Holding up the Universe