Life after acquired brain injury: Coping with anxiety and depression

I’m going to talk to you a little bit about how to cope with anxiety and depression after an acquired brain injury. I wanted to take a slightly different stance on this, and I hope that’s okay. Part of what I’d like to do is set the tone for this webinar by thinking about the lived experience of people who have experienced these symptoms after an acquired brain injury. Full disclosure: I am not someone who has experienced or had an acquired brain injury, but I have worked with lots of people who have. I’ve also talked to them about this presentation and content to make sure that I’ve tried my best to capture their lived experience.

I want us to think today about acquired brain injury as an unwelcome visitor. That is the theme of my entire session—it’s an unwelcome visitor in the most precious of places: our lives, our homes, and the things that matter to us most. To do this, the session is going to focus entirely on one analogy or metaphor. I’m a huge fan of analogy and metaphor; I use them therapeutically all the time because they are powerful ways of expressing experiences that are often difficult to put into words. It can help people come together to tell an important story, to think of ways of constructing new stories, or to investigate experiences in new ways.

For the first task, I want you to bring to mind your home—the space where you live, reside, and feel comfortable on an evening watching television. Really imagine it. The difficult task I’m going to ask you to do is to imagine your home has had an unwelcome visitor; someone who has come in and stolen or touched your belongings in that space. Take a moment to really imagine what that initial sense might feel like and connect with the thoughts, feelings, or emotions that come up.

When we think about that idea—someone coming into our homes, intruding, finding our belongings overturned, smashed, damaged, or gone—feelings of pain, uncertainty, and sadness are all very normal. There might also be feelings of shock, horror, and fear. You might wonder: Is my home secure now? Might the person come back? Where are my belongings? There’s also uncertainty, doubt, and questions about the future. If you had previously lived with depression or anxiety at the time of that happening, it’s very likely it could make it harder for you to cope, or those symptoms might get worse as you discover the aftermath.

There might be typical thoughts as you discover your home has been ransacked, such as, “I can’t believe this has happened to me,” or “I don’t need help, I can get on with it myself.” As people rally around to help you pick up the pieces, you might say things like “I’m fine” or diminish the fact that this has been a big event. You might also think, “This is nothing to worry about” or “I can move on from this.”

When thinking about what we do first in the immediate aftermath, it’s an important question to ask rather than me telling you what it might be, because that’s different for everybody. Who you might call upon, what resources you might need, and how you cope are unique to you. In my experience working with people with lived experience of acquired brain injury, I’m always curious about what happened in their immediate aftermath and their recovery.

As the dust settles—once the immediate aftermath of the intrusion has passed—we begin to secure our homes and think about getting things back. If you imagine it’s been some weeks, months, or even years, and the unwelcome visitor still feels fresh in your mind for a variety of reasons, you might ask: “Why does this still feel so hard? Why am I still struggling?” People might keep telling you that you need more support, and you might not be sure if you do. You might think, “I have all my stuff back now, so why don’t I feel the same? Why doesn’t my house feel like it did before?”

It can also be really painful when people tell you that it’s fine and you need to move on, or when they say you shouldn’t be feeling like this because your house looks back to normal. People might keep giving you advice on new security systems or tell you what they would do in your situation, which can feel stressful. Part of what makes it so difficult is the personal meaning we attach to the things in our home. Even if a replacement item is physically the same, the attachment to the original, which was lost or damaged, carries a different meaning. This affects our view of the world and how we make sense of our surroundings now versus how they used to be.

This brings us to what depression and anxiety are all about. Depression is the idea of a significant loss—loss of items, loss of meaning, or loss of self. Anxiety is about uncertainty, or what I call “what if” questions: “What if this happens again? What if I can't replace my items? What if I can’t manage?”

For some, their homes might have always felt uncomfortable or unsafe prior to the intrusion. Understanding what home means to you is important in understanding your response to loss or concerns about the future. As time goes on, some people might find that they do less as a result of the intrusion. They go out less, see friends less, and feel more isolated, leaving them alone with those difficult, painful thoughts.

If you find that you are not moving on, that you have started to neglect your home, that your sleep is affected, or that you are repeatedly locking the door, it might be time to call in an expert. Specialist help might include talking to a professional, using medication, or accessing self-help materials. It is also important to look at the people you trust and listen to their concerns; they know your common reactions to stress and might be noticing things that you haven't.

Finally, when thinking about rebuilding and living life after such an event, remember that adjustment takes time. You might feel like you’ve moved on, but small reminders—like finding a shard of glass—can bring back old emotions. This is a normal part of the process. Overall, remember that your experience of injury and loss is unique, and while it may be different now, it is still your home, and the process of adjusting continues to evolve over time.

For those needing practical support, the Headway website is a fantastic resource with self-help materials and guidance. It might also be important to speak to your GP, neurologist, neuropsychologist, or other health professionals. For carers and families, websites like carers.org can be very helpful. Remember that family can mean many things, whether it is a genetic family, a long-term friend, or a colleague. Thank you to the adults and families who provided feedback on this presentation, and thank you to Headway for their continued support.