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Blog 23

Becoming a social outcast overnight

Normally I like to keep my blogs light hearted and as humorous as possible in relation to the ups and downs of living with CVI. But after reading CVI Scotland's new section: 'Learning Emotions with CVI'; I felt compelled to tell the truth about the impact of struggling to understand emotions and the slippery slope to social anxiety and depression.

After experiencing the traumatic events of suffering a brain haemorrhage, being in a drug induced coma, undergoing an eight hour long brain surgery and spending weeks recovering in hospital; you would think that it was memories of this that kept me awake for hours on end each night as a teenager. But it wasn't. It was the absolute torment of not understanding why I had become a social outcast overnight. I didn't understand the bullying, the cruel jokes and greatly reduced friendship circle. It drove me crazy.

To me, I was the same person, right? I still looked the same and I felt that I still behaved in the same way. But apparently not. My jokes were no longer laughed at, my attempts to talk to people were ignored, I stopped being invited to social events and I even became the butt of mean hearted practical jokes. But why?

With the benefit of hindsight and the deep knowledge of CVI, I now understand and have started to forgive my tormentors.

Firstly, it was the obvious difficulties that CVI caused - I missed social cues, I misinterpreted people's reactions and I couldn't always recognise the person that was talking to me. I started to develop behaviours as a way of overcoming these challenges. I tried to guess who people were or laugh off my confusion. But these behaviours were interpreted as being rude or arrogant.

Things then became even more complex. I often found it difficult to process what people were saying, especially if I was in a visually cluttered environment, or if there were too many people involved in the conversation. But being a social person, I always wanted to be a part of the conversation. However, this meant that I often spoke over people, said something stupid that didn't even relate to what others were saying or offended someone by saying something completely inappropriate.

In truth, it only takes one incident of being mocked, laughed at or teased, to develop just a slight anxiety about social interactions. But when it is happening multiple times a day, that slight anxiety can very quickly jump to a level of anxiety that is so overwhelming it is frightening. Not only does it affect you mentally, it also makes you physically ill.

As someone with acquired CVI, I was then hit with a double whammy. My CVI was already causing me to feel alert, anxious and at times frightened in the challenging school environment. But then on top of this, I was now experiencing high levels of anxiety around any social interaction. So my brain did what it is meant to do when dealing with extreme anxiety - it told me to either fight or flight. I chose flight, as I didn't actually know what I was fighting, so therefore didn't have the tools I needed to make it a fair fight.

I tried to avoid as many social interactions as I could. I hid in the library or in a teachers office at break times, I slunk away from people approaching me to avoid talking to them and I tried to make myself invisible when in groups of people by not engaging in any conversation.

This made life even harder and unbearably lonely. What started as anxiety and an attempt to protect myself from further hurt quickly led to social isolation and depression. At home, I spent as much time as I could in my bedroom by myself. I stopped going to activities that I used to enjoy and on the odd occasion where I was invited to a social activity, I would only go for a little while and only because my parents forced me to go (in all fairness to them, the most obvious solution for social isolation was to get me back out amongst people).

In fact the only thing that got me through my last year at high school was my school work. I was desperate to escape my tormentors and to me, the only way I could do that was to leave home and go to university. To do this, I needed to pass the year and gain university entrance. So I buried myself in my schoolwork and refused any attempt by my parents to deal with the depression.

Luckily things have changed considerably since those dark days. I understand my CVI and the challenges it causes me in social situations. So now, instead of trying to avoid as many social activities or interactions as I can, I explain to people about my disability and why I find certain situations hard. I have also developed strategies to help make social activities easier (like arriving early when there are less people there, finding quiet spots away from the crowds to have calm breaks, avoiding conversations with large groups and leaving as soon as I realise it is becoming a bit overwhelming for me).

But most importantly, I am surrounded by family, friends and colleagues who understand my quirkiness for what it is and still love and accept me despite my sometimes socially awkward behaviour.

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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.