Anxiety

Here today, so like Tamon was saying, I'm going to talk to you a little bit about how to cope with anxiety and depression after acquired brain injury.

I wanted to take a slightly different stance on this, if that's okay, and talk to you about that.

Part of what I'd like to do is set the tone for this webinar and think about anxiety and depression. Part of that is really thinking about the lived experience of people who live with anxiety and depression, or have experienced those symptoms after an acquired brain injury.

Full disclosure, I'm 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, and that's going to be the theme of my entire session. It's an unwelcome visitor in the most precious of places: our lives, our homes, the things that matter to us most.

To do this, the session's going to focus entirely on one sort of analogy or metaphor. I'm a huge fan of analogy and metaphor. I use it therapeutically all the time, but I also enjoy it individually in terms of explaining complicated concepts or trying to understand somebody's experience. It's a way of sharing, I guess.

Why I like it is that it's a very powerful way of expressing experiences in a symbolic way that is often difficult to put into words. I often hear that in my work in acquired brain injury, that it's difficult to put into words how I feel.

It can help people come together to tell an important story or to think of ways of constructing new stories. It's a way of sharing an experience. It can also help us investigate experiences in new ways and different ways.

Finally, hopefully it's new, different and engaging. It's something that you might not have had before.

So this is the task I'd like you to start this webinar with. It can be really difficult to do this, so what I'd say is if it's uncomfortable, or if it's particularly sensitive at the moment, please feel free not to do this. Just listen, move on, or in the most extreme case please log off if it feels hard.

What I want you to do is bring to mind your home, your space, the place where you live and reside, the place where you feel comfortable on an evening watching television. Really imagine it.

The difficult task I'm going to ask you to do is imagine that your home has had an unwelcome visitor. Someone has come in and stolen or touched your belongings in that space.

Again, just take a moment to imagine what that initial sense might feel like and try to connect with what turns up. What sort of thoughts, feelings or emotions turn up? What sorts of things pop into your mind, and how might you feel?

And when we think about that idea, the idea of someone coming into our homes, intruding, that sense of finding our belongings overturned, smashed, damaged or gone, feelings of pain, uncertainty and sadness are all very normal in that situation.

Certainly, I imagine if my home had been ransacked, I might feel a sense of distress, sadness and worry. There might also be feelings of shock, horror and fear. Again, those are all very normal.

Is my home secure now? Might the person come back? Where are they now? Where are my belongings?

There's also uncertainty, doubt and questions about the future. Again, those are very normal in the immediate aftermath.

How do I manage? What do I do? What do I need to do? Contacting insurance companies, contacting friends, these are all very typical and normal reactions.

If someone had previously lived with depression or anxiety at the time of that happening, it's very likely that it could make it harder for them to cope, or those symptoms could get worse as they immediately discover the aftermath of someone being in their home.

There might be some typical thoughts as you discover that your home has had an intruder. Things like:

"I can't believe this has happened to me."

"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." You might diminish the fact that this has been a big event and say everything's okay.

You might also think, "It's all going to be okay. This is nothing to worry about. This isn't a big thing."

Similarly, "It's nothing. I can move on from this."

Another common theme is, "This could have been so much worse," particularly as we look through the belongings that are left and find the ones that were hidden away or were a bit more secure. We think, "Thankfully they didn't go."

So what first then?

If you imagine again the idea of someone breaking into your home, your safe space, what do we do first? Thinking about what help we might need in the immediate aftermath.

In a way, it's thinking about those normal, typical emotions and reactions of fear, sadness and pain, and asking what support might we need in the immediate aftermath.

I think that's an important question to ask rather than telling you what that might be, because ultimately that's very different for everybody. Who you might call upon, what resources you might need, what you might need to do, and also how we cope with it.

Again, in my experience of working with people who have lived experience of acquired brain injury, I'm often curious about what happened in the immediate aftermath and during their recovery.

Importantly, who might help us? Is that someone we're really close to? Is it a family friend? Is it a professional?

Again, this is slightly different for everybody, but there may be some common themes.

Suppose the next stage then is thinking about what happens as the dust settles. Once the immediate aftermath of the intrusion has happened, what do we then do as we begin to secure our homes, tidy up and get things back?

If you imagine it's been some weeks, months or even years now, the unwelcome visitor for a variety of reasons still feels really fresh in your mind and your life. You just can't seem to shake the fact that this has happened.

What sort of things might you be thinking or feeling at this stage? What kind of emotions turn up? What kind of worries or concerns turn up as well?

There can be some typical thoughts in this period:

"Why does this still feel so hard? It's been weeks, months and years now. Why am I still struggling?"

"People keep telling me I need more support and I'm not sure if I do. I think I'm doing okay, but I'm obviously not."

People might also think, "I have all my stuff back now. I think it's all there. Why don't I feel the same? Why doesn't it feel the same as it did before? Why doesn't my house feel the same?"

There might also be thoughts like, "I wish I could move out. I just wish I could move away from this place and pretend it didn't happen, or just get away from it."

Again, commonly: "I wish other people understood how this feels."

Although other people might have experienced a break-in or an intruder, to really sit with and experience what this current feeling is like can be really hard for other people to understand.

It also really hurts. It's really painful when people tell me that it's fine and I need to move on.

It also hurts when people say that I shouldn't be feeling like this because my house looks back to normal. They've visited, they can see all the belongings, and they say, "Well, it's fine now, isn't it? Everything's here. Everything's back as it was. We can just move on."

People keep banging on about new security systems or what I should or shouldn't be doing. In their experience they would do this. "You should really do this." "Have you thought about this?" That can feel really painful and stressful as well.

People might want me to move on, but everyone seems to have an opinion about what I should be doing, whereas I just want to move on from this.

It's also really difficult when they compare your intruder to their friend's, auntie's, sister's or brother's intruder. We all might have some distant connection with someone whose home has been broken into, and it can be unhelpful to hear about another person's experience and what they did to get over it or move on.

Part of what makes it so difficult is the personal meaning we attach to the things in our home.

We all might have homes. We all might have belongings. But it's our attachment to the meaning of those belongings that makes a home a home.

The items we hold dear might be lost, damaged, or they might still be there but feel different. The picture frame with the photograph in it that was overturned or smashed feels different because we assign different meaning to different items.

A cushion, for example, can be relatively meaningless or it can be very meaningful. The idea is that it's a cushion and it's replaceable in a physical sense, but it feels different when the replacement is made.

It can also affect our previous view of the world, and it influences our current view of the world. What does it mean now that someone's been in my safe environment, the place where I feel safe?

This thing has happened, and how do I make sense of my understanding of what the world used to be like compared with what the world feels like now?

That brings us on to what depression is, what anxiety is, and what it's all about.

If we think about depression initially, this is the idea of significant loss. Loss is the key word here. Loss is about change. It's about things that aren't there anymore. It's the loss of meaning.

That is very different for everybody.

Whilst there are some common themes in loss, such as the loss of property, personal belongings or expensive items after an intrusion, it's really about the meaning behind those items and what loss means for people.

From an anxiety point of view, what's that about? Really, it's about uncertainty. Or, as I like to think about it, "what if?" questions. Future-based questions.

"What if this happens again?"

"What if I can't replace my items?"

"What if the insurance doesn't pay out?"

It's the idea of these repeated "what if?" questions and uncertainty about the future, about our ability to cope and manage.

Again, I really want to emphasise those two points. When we think about coping with anxiety and depression after acquired brain injury, from a depression point of view it's thinking about loss and what loss means. With anxiety it's thinking about uncertainty and uncertainty for the future, commonly for many people.

I thought this was a really important point. Home might have always felt uncomfortable for some people. It might have always felt unsafe or estranged from a place that was meant to be their safe place prior to the intrusion.

For a variety of reasons, home for some people just isn't a safe place.

If we think about the idea of an intruder coming into that space, it can make our experience even harder, particularly when we've lost belongings.

Again, understanding what home means to us is important in understanding responses to intruders, loss, or concerns about the present or future.

Often, thinking about how we cope with anxiety and depression is thinking about what safety meant before this happened and what safety means now.

So, moving this analogy on a little bit further, I want you now to imagine that it's been some time after the intruder, after the break-in, after someone's been in your home.

It's been some weeks, months or years, and the unwelcome visitor still feels really fresh in your mind and in your life. You just can't shake it.

Again, a question for you all is: what sort of things might you be thinking or feeling at that stage, particularly when we think about months or years after the event?

There might be some really particularly painful thoughts during this period. People might say things like:

"I can't cope feeling like this anymore."

"What's the point?"

"People help, but I don't seem to feel better after they've helped."

Again, repeated "what if?" questions. It feels like my mind is full of "what if?" questions. I can't seem to move on from it.

More challenging is where people say:

"I don't like the person I am now."

"I wish I was like that old person before the intruder."

It could be that I was carefree, that I was doing more, or that I felt safer.

People might also say things like:

"The world is shit."

"I am shit."

"Will it ever get better?"

Again, it can be really hard to live the life you would want, or think you should be living, when these thoughts and feelings are relentless. The constant "what if?" questions and constant sense of feeling unsafe and danger can really take their toll.

For some people, changes to their living circumstances, in whatever form, offer more opportunities for these thoughts and feelings to hang around and cause hurt.

Commonly, people might find that they do less as a result of the intruder. They go out less, they see friends less, they feel a bit more isolated, and they're much more alone with the difficult and painful thoughts and feelings.

So, bringing it back to what we're talking about and thinking about common reactions.

In the case of depression, it's very common for people to feel a real deep sadness. This is a persisting feeling of sadness and loss.

Questions like:

"Will things ever be the same?"

"Can they ever be the same?"

"Will it always feel different?"

The idea that I cannot cope with the losses I've experienced.

For others, it gives them a different view of the world. A view that the world is dangerous and that my life isn't the same as it was before.

There might be a tendency to see everything as bad. I just notice the very bad things that happen in life. I turn on the news and I'm overwhelmed with all the bad things that happen, or I'm aware of my friends and all the bad things that have happened in their lives.

For people, there can also be a loss of hope. The idea that I cannot imagine how things could be different for me in the future.

There can also be a huge change in how you live your life. Changes to hobbies, sleep and diet. Again, these are all potential indicators of depression and the presence of this unrelenting feeling over time.

Thinking a little bit about anxiety, it might be that there's deep concern. Deep concern about "what if this happens again?" or "what if they come back?" in the case of this analogy.

"What if I can't manage?"

"What if I can't get through this?"

Again, very commonly, with that analogy of "what if I don't find my things again?", there can be a real deep sense of unease. Thinking that the world is dangerous, or more dangerous than it was before, and the idea that I am unsafe. I feel unsafe.

For a lot of people, there's also the idea that our body feels a bit more on guard. My body is reacting to fear. Feeling more tense, on edge, fidgety and restless, with that persisting over time.

I think particularly for people who might experience change after an intrusion, there's that constant question of: is this just normal body stuff, or is there something more? Is there something different happening here?

I almost don't understand what my body's doing now. I can't understand the signs that it's telling me.

That leads to the question: do we need specialist help at this point? And what does specialist help look like?

Again, if we go back to the intruder idea, how do we know when it's time to call in the expert to help me with how I'm feeling?

Really, it's about the passing of time and the idea that we still don't feel right. It's hard to imagine how our homes will ever feel the same again. How will we ever get things back to how they were?

It might be that you've started to neglect your home. Not tidying up, not cleaning, not doing the things you would normally do. Again, asking the question:

"What's the point when the world is so unsafe?"

Thinking:

"What if it happens again?"

"I can't settle."

Thinking about it all the time.

"It's affecting my sleep."

"I'm avoiding people."

"I'm repeatedly locking the door."

"I just can't settle because of how I feel."

Again, that idea of:

"My things are here."

"I've got all my stuff."

"I've replaced things."

"But it just feels different."

"I can't settle in my home."

As I've previously talked about in the context of depression, not being able to cope with the loss anymore.

"I just can't move on from the loss and what I've experienced."

I think an important sign, particularly when we've gone through a loss or we're experiencing uncertainty, is looking around at the people we trust and noticing whether they are showing more concern about our experience.

Really listening to them, because you trust those people. They know you. They know your common reactions to stressful situations.

With the idea of an intruder, an intrusion or a break-in, what are they noticing?

Maybe I need to ask them.

Maybe I need to think:

"How do you think I'm getting on?"

"Are you worried about me?"

Or maybe they're already expressing that worry.

That may be a sign that getting some specialist help might be a good idea.

But what does specialist help look like?

There are some common things, but as I mentioned, it can be different for everybody. I think it's unfair to say that there's one right thing for every person, particularly after an intruder.

Employing a security specialist might help. For some people that might be really helpful.

Talking to someone about what happened and getting their expert advice might also help.

For some people, medication might be helpful. It might help them feel safe enough, or reduce the pain they're feeling, or the restless symptoms they have.

It might also help them do the first two things. In order for me to see a security specialist, or in order for me to talk to somebody, I might need medication to help me access those things.

It may also be important to stay socially connected and maintain our roles and relationships.

We may need specialist help to help us repair our homes, for example, but there may also be self-help materials and advice from others with lived experience.

In this example, that might be watching YouTube videos, accessing websites or looking for government information about how we might cope with an intruder or a break-in, and what feelings are common.

In a way, that's part of why I've introduced this analogy. I'm trying to look for a way of communicating a shared experience and how we might talk to others about how it feels. That's a big part of this as well.

So, moving on to the final stage in the analogy, it's thinking about what rebuilding and living looks like after we've had an intruder in our home.

Adjustment to something like this really does look different for everyone.

There are some common things that can be helpful, but there is personal meaning in loss and uncertainty, as I've already discussed.

Again, thinking about the picture frame and the cushion, it isn't just about those items. It's about what those items meant to us.

We might feel like we have moved on, but small reminders of the loss can bring back old emotions.

Going back to the analogy, we might find a symbol some years after the break-in or intrusion. In this example, it could be a shard of glass, as you might see in the bottom right-hand corner there.

Once we experience that, it might bring back all of those emotions again. The fear, sadness, pain and concern might feel very familiar, even though it's years and years later.

So, in summary, and covering some of the main themes I've discussed:

Feelings of fear and sadness in the immediate aftermath are completely normal when we experience intrusion or someone comes into our home.

People can cope, manage and find a way of moving on with support from people close to them, but it can be really hard.

Some people, at different times, feel overwhelmed by their sadness and worry and may need additional specialist help.

Feelings can re-emerge, and adjustment takes time, particularly when coping with anxiety and depression.

Again, just really bringing it all together, if we think about what the break-in or intrusion represents, this is people's experience of injury and loss in the context of an acquired brain injury. It's about their story and their experience of loss and brain injury.

When we think about picking up the pieces and replacing items in our home, really this represents early recovery and survival.

I've survived my injury and I'm beginning to think about what the future looks like and what help I might need to rebuild.

The redecorating, rebuilding and fixing, and doing that with help, could be rehabilitation and support in whatever form that takes.

For some people, they might need more rehabilitation or more support. Others might need less.

People might also experience that some days they want to move out of their home, and some days they love every detail of their space. That can change on an almost daily or weekly basis.

We talk about this when thinking about adjustment over time to brain injury, about what my life feels like and looks like now after I've experienced an injury.

Also, things like:

"It's different now, but it's home."

This idea that I've adjusted, or I'm continuing to adjust. I've learned to love my space even though it is different and feels different.

That process continues to evolve and change over time and, again, is different for everybody.

It's a constant process of learning and adjusting, often with support, but often with people who are closest to us and who can help us through that period of adjustment.

Thinking about getting some very practical support if you're experiencing symptoms of depression or anxiety.

For people affected by brain injury and their carers, the Headway website is obviously a fantastic resource. There are lots of self-help materials there, as well as practical guidance about where you could go for some additional support.

It might also be important to speak to your GP, neurologist, neuropsychologist, psychologist, occupational therapist or another health professional you might be getting support from, or a mental wellbeing service.

In particularly difficult situations, Samaritans or another talking service may also be helpful.

For carers, family members or people who want to know how to help someone they care about, it might be important to go on websites such as Carers.org.

I've put "family" in inverted commas because family doesn't have to mean genetic family or the nuclear family. Family can mean lots of different things, whether that's a friend you've known for a very long time, a colleague, or someone you consider important to you.

So that's everything I wanted to cover today. I hope that all made sense.

Thank you very much.

I just wanted to say that if you have any questions, I'm happy to answer them.

Also, a special thank you to the adults and families who provided feedback on this presentation in advance. They really felt that this analogy captured some of their lived experience, and I wanted to share that with you all.

Massive thanks as well to Headway and the professionals involved in producing specialist guidance and advice for people affected by acquired brain injury.

Last but not least, Dr Gabby Parker, who supported the development of this analogy and metaphor and listened to me come up with ideas.

So, thank you very much.