This topic came as a suggestion from a follower and brain injured friend. To be honest, when I read that suggestion, I was surprised that I hadn’t taken the time to write about it earlier as connecting with others has been such an important part of my journey.
As we know, brain injury can be very isolating and we can often feel misunderstood by others. For many, it is an invisible injury so grasping the extent of the cognitive and identity changes that have occurred isn’t that straightforward. Although the perception of others can play a role when thinking of connecting with others, I also think that we individually seek some understanding , some clarity about what the future might hold and a sense of normalcy, so this is an aspect of connection that we also need to bear in mind.
My personal journey with connecting with other survivors
In the early days of recovery, I was given so little information about my diagnosis, my recovery and its potential outcomes and I remember feeling lost and scared about it all. I wanted to connect with other people who had had encephalitis to get reassurance, but also to get a true picture of what life may look like going forward. I eventually hopped on social media and looked for existing support groups. To my delight, there were quite a few and I started following them all. By reading the posts and associated comments, I was getting a heads up for what things may be like, but I found that many of the groups that I was following weren’t necessarily solution focused. I knew that no two brain injuries were the same, but the pictures painted were often grim and left little place for hope at times. That being said, I did come across some fabulous individuals that I’m in touch with today.
After a while, I put some of the online groups on the back burner as they could be generating more anxiety than comfort if it makes sense. Dealing with my personal anxiety was overwhelming enough at times so I had to make this call to best support my mental health and overall recovery.
Attending face to face brain injury support groups wasn’t convenient for me either as I wasn’t allowed to drive, I lived in a rural area of New Zealand where buses weren’t accessible and most of my free time was taken up by medical appointments or resting. I sort of went MIA for a while and although I was feeling very isolated, my desire for connecting with other brain injured people had gone dormant too.
That desire for connection eventually came back and I started reaching out to different people recovering from brain injury once again. I wanted to build connection based on honesty and authenticity, but I also wanted those connections to spark some hope and to be solution focused. I wanted those connections to support recovery and for them to be conducive of helping me & others move forward. Around that same time, I had just started my blog so when writing a blog, I knew I had to find a way to be relatable yet install a sense of hope too.
It is a very fine line to walk between too little or too much honesty.
I eventually came across a few more individuals with lived experience of brain injury and who were seeking similar type of connection. I think this was a pivotal moment for me as it opened up my eyes to a whole world of opportunities. It reminded me that there are so many brain injury survivors out there also seeking understanding, direction and connection. From there, there was no going back, my train of thought being: “if it helps one person out there, it’s worth reaching out.”
And then, Covid hit and really took things to another level. All of a sudden, everyone could relate to this feeling of isolation and it really confirmed to me that the need for connection is essential in life…potentially even more so for people who have been and will carry on facing health challenges once Covid has been and gone.
Read the full story: www.weirdwonderfulbrain.com/post/connecting-with-brain-injur...
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