It's great you crated this space @tyme I hope this is not too long and rambling!
I did not know what agoraphobia was when I first experienced it. I was 12 and spent 14 months terrified of being anywhere other than my bedroom. In retrospect, anywhere with other people because I thought I was something close to a repulsive monster on both the inside and outside.
I did not know this feeling was fairly common in children with trauma from abuse, there were not the outside psychological supports or understanding in the 80's. I was hospitalised during this time due to an eating disorder, I told my whole story yet there was no ongoing help, support or intervention.
I did then spend years being outgoing, albeit with anxiety that I masked well, to the point of appearing to be a very wild social Butterfly.
In my 30's, I witnessed my partner ending his life. Once again, the world felt increasingly frightening, I gradually began to have panic attacks whenever I was out of the house. This led to 7 years of being completely agoraphobic. I had a successful bookshop that crashed badly, I went bankrupt because I could not get to my shop, nor could the mental fog allow me to employ anyone else to keep my business afloat. I depended on a friend delivering food & others to take my daughter to school. My doctor did not understand that my agoraphobia was so severe that getting to her for my anxiety medication was impossible, this lead to a downward spiral of depression. I remember a friend dropping by and marvelling at the fact the bushes had overgrown the gate and front door, it was exactly the state of my mind, closed off from the world.
The irony is that I thrive on lively conversation and love visitors so much, they just had to be in my safe place. A lot of friends walked away believing agoraphobia means not liking people or a whole personality change, maybe thinking it is a choice. I wish people understood that sometimes
for people with agoraphobia, even the washing line or mail box feels another hostile planet but essentially, we are still us with all our personality inside.
I was unable to see my beloved father overseas for the 6 years before his death. This is the most devastating part of this period of my life.
Agoraphobia steals memories created with the people you love. I missed seeing so many of my children’s outside of home growing up activities, I worry about they will feel about mum, the house elf when they are older or even now.
I eventually did venture out again, this time my anxiety & depression was always heightened although I could still put on the mask of the outgoing social butterfly. My circle of safety become only certain places, certain routes, certain peoples invitations that felt safe. I developed a terror of cars which remains, as does vertigo.Any social interaction took days to recover from, overwhelmed easily became the new normal.
The internet became my playground and most of my social life. I told myself it was alright to be a hermit because I was always working on some art or craft. Inside, I just wanted to be rescued and did not know how to do that for myself so I either escaped into projects or online shopping addiction or endless social media scrolling.
I had a severe spinal injury that compounded my agoraphobia, even if I mentally was able, I often with simply wrapped in physical pain. My injury was from DV that happened in 1992. The progressively increasing pain made me feel despairing and angry at the past and future.
The third long period, (Each has had shorter agoraphobic periods in-between),where agoraphobia crept back was through some pretty heavy vicarious trauma and direct events that shook my belief in the legal/ justice system, in Australia basically. I was fighting for a cause and I forgot to look after myself, I forgot to eat, sleep, take time out. I was consumed with the fight. I was truly out and about in the world and felt invincible. That was until I stopped, I crashed so hard and suddenly could no longer leave my four walls.
That was in 2017, this was different. I felt like I was broken and the shame I felt began to extend to my online interactions. I simply felt like an unworthy imposter so I lost the friends I had on there and gradually my world shrunk a lot more. I had two good friends who visited every week or called & then only one.
The only normality I felt was during Covid lockdowns, in fact I walked sometimes, the solidarity in people encountered on the way was somehow softer. I also felt fury at the constant outpouring of distress people were feeling at not being able to continue their normal activities. I realise this is unfair yet they were my emotions because suddenly there was help for people I perceived as having to stay in their houses for a relatively short period.
When life normalised for most, I became smaller in my world. The anxiety extended massive sound and light sensitivity. If the wrong light was on, I would feel like the house was no longer safe. My moods plummeted to the darkest thoughts. I lost inspiration for all my former passions of art and craft. My daughter became estranged from me, another agony I can hardly describe.
I began to see a new psychologist, over the course of the last 3 years I began EMDR therapy. I slowly began taking my younger children to school and back, added in the odd quiet shop and sometimes even the supermarket and other grocery shops were possible. I started to go to the gym and on long walks and trail runs. I finally had spinal surgery in April, that was my incentive to be as fit as possible and also meant leaving the house. I still felt shame, I would sometimes SH over something I had said or just general self loathing when back in the house but I kept going out regardless. I had a mission this time, I had to get to the point of being able to visit my frail elderly mother overseas, I was able to this last year which was such a sense of achievement and joy.
In August, I was diagnosed with a tumour which led to a stress induced domino effect of life changing mistakes on my part. I had a massive breakdown, My agoraphobia once more returned, this time to the point I could not open the door to the postie or stop thoughts and actions of SH. At the point I joined this forum and relied on LL calls often, both of these things kept me afloat as my Psychologist was away. This time I felt I would not make it but I knew I must for my children.
I am back to regular EMDR, I am taking baby steps to leave the house most days, walking and running feel grounding and healing. I sometimes dance on my own in the bush, I feel real joy, the precious seeds of hope that spread out roots that become glimpses of what could,(will), happen when I beat this thing. Realising I have spent most of my life in a state of dissociation is both confronting, (again a grief at time lost), and liberating because I feel understanding this can lead to learning self love of the real person, not the fantasy escapist who might lose all the years left.
There is a lot of grief with agoraphobia for the years lost, for the experiences missed. There is a sense of not enough time to ever make up for those so I think a huge thing to work on is learning not to ruminate and also to allow a grieving as you would any other loss.
It is hard to look at my older face in the mirror and long for could have been, yet with determination to make what time is left rich and a life being lived, I continue everyday to try to go out to hear birdsong & feel the air on my face. To put one foot in front of the other outside four walls in the ongoing quest to expand this little world to one with infinite possibilities.
I have condensed this enormously as there have been other seemingly insurmountable trauma’s.
I wish Agoraphobia was talked about more in the context of mental health because voices heard are such an important part of recovery. Almost everyone with Agoraphobia has a trauma history. Some of our history we may not feel comfortable sharing, even with close friends or family. This makes it even more important that awareness and support from the mental health sector becomes more available. Humans should not be able to slip between the cracks unseen in their suffering. We are not choosing to be eccentric hermits, we are unwell and wishing to thrive. I have had the experience of so many health professionals dismissing agoraphobia as a bit insignificant, a humerous quirk or an anomaly. I know there are so many people who struggle with its unrelenting, isolating grasp.
Thank you for reading if you got to the end of this rather long post.
I may be hopeless at replying to any comments quickly. Still learning not to get overwhelmed online, still get imposter syndrome which freezes action but working on this too:)
