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Holding unrealistic expectations of others understanding of TBI

Holding unrealistic expectations of others understanding of TBI

As people, we know others don’t always understand certain elements of our lives; whether it’s the complexities of your job that they oversimplify and make sound easy, or how society pressures impact on your decisions and make you choose the option of least resistance that makes your heart sigh with disappointment as you feel you can’t follow your dreams this time. However, even though we know it’s impossible for another person to really understand how our experiences affect us, it’s disheartening when they demonstrate their grasp of the situation.

It’s phenomenally difficult for people to accept what life with a brain injury is really like; I’ve freely admitted that before it happened to me, I didn’t get it at all. Even neuroscientists don’t understand all there is to know about the brain, so how do the rest of us stand a chance? Add to that how every brain injury is unique and you have endless possibilities of how that can affect the life of an individual survivor. But that doesn’t stop us from hoping our friends and family have seen enough of what we’ve been through to be better informed.

Recently my partner and I visited some people who we are close to but live several hours away from us and so stayed over for a few days. It was great to see them as it had been a long time, thanks to the pandemic. However, like many other brain injury survivors, I do find social situations exhausting. Knowing this, I kept excusing myself for regular breaks and naps to try to recharge my batteries. But unfortunately, this didn’t give me as much relief as I needed. I was still finding all the conversations and noise overwhelming. Each time I thought I was ready to return after a rest, my head would start swimming the moment I approached the room with them in. This made me grumpy as I couldn’t do anything to make the situation more tolerable. It was their house - just because I like to sit in silence at times, I can’t ask them to do the same. So, do I isolate myself for the entire time or attempt to show my face, albeit a grumpy one? These people do know that I often need to rest so they take no offence when I disappear for a bit, but no one want’s a cranky killjoy cluttering up the place, so they must have found it wearing each time I returned with a still miserable face.

One time I returned just as they were in the middle of a particularly noisy game, and I instantly regretted my entrance. They continued for a few more minutes until one person said, “We better stop or we’ll hurt Michelle’s ears.” I did appreciate the show of consideration but tried to explain it’s not that I feel pain in my ears but more that it overwhelms my brain. “Well, they’re connected, aren’t they?” was the response. Of course, this is technically accurate and I do understand that they were sacrificing their enjoyment for me but I still felt this was a little barbed. Worse though for me was how this demonstrated how they didn’t really understand what I was going through. I had thought that they sort of got it, but that showed me that they didn’t. This comment swirled around in my head for days and made me feel more alone than I have for a long time.

I have since had to re-evaluate my expectations of my social circle. Naturally, I don’t expect strangers to appreciate what my brain injury does to me, and I have realised that I have put those who are close to me on a pedestal. But then I realised that nothing has changed. Their feelings towards me are as warm as they always were, and our relationship is unchanged. It’s just that I have seen my expectations of them are unrealistic. Just like someone can know what your job is but not fully appreciate the intricacies of what it entails, they can broadly know what my brain injury makes challenging for me without understanding how that feels. Accepting this situation is important for me because it enables me to have a wider perspective on things. The moment I decided this friend had failed my expectations I felt upset. But once I understood that I was in fact being unfair and judgmental I saw that I didn’t need to be upset as they hadn’t wronged me.

It can be difficult to maintain relationships following your brain injury because misunderstandings happen. Some relationships will not survive, but others are worth fighting for. I hope other survivors can take something from my experience and forgive small indiscretions from their loved ones who are doing their best.

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