Connecting with Brain Injury Survivors

Blog by: Veronique Theberge

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 always straightforward. As survivors, we often seek clarity about what the future might hold and a sense of normalcy a few of the reasons why connecting with other survivors may be valuable.

Many of us will have been given little information about their brain injury, what recovery might entail and look like and also around the potential outcomes. I personally remember feeling lost and scared about it all. I wanted to connect with people who had gone through a similar experience to get reassurance, but I didn’t know where to start.

Attending face to face brain injury support groups wasn’t convenient for me as I wasn’t allowed to drive and living outside the main city, buses weren't easily accessible. I felt isolated and wanted to change that, but energy levels and accessibility could be big hurdles. 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.

I eventually came across a few individuals on social media with lived experience of brain injury who were seeking to connect with others like I was. 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."

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 wanted to find out from other brain injury survivors why connecting with other survivors was 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 organizations 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 organizations 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 organize 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 supportive.

Not every person or group will be a great fit and that is ok. I think it's important to recognize 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. 

So if you haven’t already, take that first step in connecting with other survivors, I believe you will find that it will greatly benefit you as well. It’s never too late to start and now is as good as a time to do so.