Connecting with Brain Injury Survivors
Updated: Nov 11, 2022
This blog 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.
Benefits of connecting with other survivors
I sure know how I have benefitted from connecting with other people living life after brain injury, but as I began writing this blog, I thought it would be super important to actually reach out to the brain injury community and find out why connecting with other survivors is important to them and how they too have benefitted from doing so.
There were a few responses that I was expecting, but I was surprised to read how some had benefitted from connecting with others and how crucial this had been for them too. Amongst the expected responses I found the following:
People just "get it", they understand what I'm going through
Not feeling so alone
Sharing ideas/tips and advices
Finding some form of support
Belonging to a community
And on the less expected side I found responses that are as equally important and full of meaning such as:
To be able to tell my story...which in my eyes can be so healing in itself
To support and give back as other survivors have done for me
To help make sense of what's happened and of what is still happening now
To find vision and inspiration which can be invaluable during recovery
To make and build great friendships, some of which have now preceded many existing and old ones
To find resources of all kinds which have been supportive of my recovery
To learn as much as possible about my condition and how I can best support my recovery
I was really touched to see so many survivors sharing their own personal reasons with me. That in itself shows how important each of our voices are.
Another SUPER important aspect from which I've personally benefitted is in finding support navigating my personal mental health struggles. Not everyone feels comfortable sharing that aspect of their journey and that is absolutely ok, but I've personally never shied away from being quite upfront on how brain injury recovery has been the biggest mental game that I've ever had to play. It is heck of a roller-coaster and in sharing snippets of my mental health journey, I've been privileged to get a tremendous amount of support from others being all too familiar with those uncomfortable emotions...and I'm secretly hoping that although others may not feel comfortable speaking up just yet, that they may have related or benefitted from me sharing some of my personal battles too.
Tips on connecting with other survivors
As with so many things when it comes to brain injury recovery, of the million dollar question is often where to start right? So following are few tips that may help you initiate connection with other brain injury survivors.
Ask your hospital or your health professionals if they know of local organisations that could be helpful getting in touch with.
If energy is scarce, ask a family member or a friend to do a bit of research online for you. It is also a great way to get them involved.
Look for brain injury or specific brain injury online support groups on social media.
Listen to brain injury podcasts, they often have guests which have lived experience and they may provide ideas on who to follow or connect with.
Some brain injury organisations have connection schemes, get in touch and see if they can put you in touch with another survivors in your area. This has the added bonus that you may be able to organise a face to face meeting a bit more easily.
Look for virtual support groups. Some meet weekly or monthly and they can be really helpful in breaking the ice and growing your survivor inner circle. Some will be audio, some will be audio-visual so it's really up to you to try and see what works best for you.
Type #braininjury or other relevant hashtags on social media, and check some of the related accounts that come up. That can be an easy way to start following some accounts.
If building social connection with other survivors is important to you, I think that there is nothing more effective than sending a direct message. You will find that most are super supportive.
Not every person or group will be a great fit and that is ok. I think it's important to recognise who/what brings you value and not feel bound to an option that doesn't quite work for you. Plus, you have only so much time in a day so I personally think that it's important to put your energy where you are going to get the most bang for your buck. Just remember to be kind in your interactions with others as we never truly know what others are going through.
How connecting with brain injury survivors has changed in the last few years
In the last few years, I've noticed a real change within the brain injury community...or perhaps it is my own perception that has changed. I feel that there is a huge desire to support one another and less of a focus on who has it worst. There is a growing understanding towards the fact that we all have our personal and individual challenges, but the commonalities prevail and that's what survivors are focusing on when connecting with others.
Most of us have gone through some real rough times and one of the common pillar is that we don't wish to see anyone else go through those same struggles, or at least, we each want to play a part in minimising their personal struggles.
One of my bucket list item is to one day be in a position where I get to meet some of the survivors I've connected with over the years. I wish I could met them all really, but I'm realistic enough to accept that unless I win the lottery, this might not happen. But I am still going to work towards ticking this item off my bucket list.
I recently had the chance to meet one of my first online encephalitis friend in person. I felt like I had known her for ages already and it was truly a beautiful moment. I wasn't prepared for how emotional this gathering was going to be. It was really special to me and for both of us. Meeting in person was an absolute pleasure, but the familiarity and bond that we shared from the moment we were face to face proved to me that there is a huge amount of power and benefits from online connections too. So until I get to meet other beautiful survivors that I've connected with in person, you will find me liking and messaging many of you on here or on social media.