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Episode 13

See the hidden me!

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This is a special episode of brain injury bites recorded for ABI Week and the theme this year is ‘See the hidden me’ - basically about the hidden disability of brain injury. 

Action For Brain Injury Week is an annual campaign in the UK to raise awareness of the devastating effects of brain injury. It's organised by Headway UK, which is a national charity that we've spoken about on a number of occasions before and that charity supports people who are survivors of brain injury as well as their friends, families and carers.

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Brooke 00:00:02 - 00:00:15 

Hiya, I’m Brooke and I'm here with Ashwini. This is a special episode of brain injury bites recorded for ABI Week and the theme this year is ‘See the hidden me’ - basically about the hidden disability of brain injury. 

Ashwini 00:00:15 - 00:01:08 

So yes, Action For Brain Injury Week and is an annual campaign in the UK to raise awareness of the devastating effects of brain injury. It's organised by Headway UK, which is a national charity that we've spoken about on a number of occasions before and that charity supports people who are survivors of brain injury as well as their friends, families and carers.  

So, we've talked about this in previous episodes, haven't we, Brooke? About invisible disability and your own experiences of living with a brain injury. And I think it's really important to touch on again because certainly if I was to meet you, Brooke, out and about, I don’t think I would necessarily realise that you had a disability. I think that's part of the point that when you say disability to people you expect to see something physical, don't you? 

Brooke 00:01:08 - 00:01:18 

Yeah, I think I've got to the stage in my recovery where I can appear to say 95% of people as though I don't have anything wrong with me. 

Ashwini 00:01:18 - 00:02:34 

When you think about disability or when people say disability, immediate thoughts turn to things like wheelchairs. I mean, it's no coincidence that when you look at badges for disabled people, it's always somebody sitting in a wheelchair, or it might be somebody who's on crutches or who has a seeing-eye dog or some other external prompt to show that there is a disability. But the whole point of ‘See the hidden me’ is raising awareness of and shining a spotlight on invisible disabilities.  

We've spoken about this in the context of brain injury, where those disabling factors can be issues with your memory or vision or hearing, your loss of smell and taste, anxiety and depression, a whole host of different ways in which a brain injury can affect somebody. 

I think it would be useful to share some of your experiences again with our listeners, Brooke, and thinking about how they impact on you. I know you've spoken in the past about anxiety, and you mentioned when we were chatting early just about something to do with when you went out, and you were worried about a door that you'd locked or not. 

Brooke 0:02:33 - 00:03:28 

Just little things that go on in your head. I mean, obviously, it sounds cheesy, but a lot of the brain injury is in your head. I mean literally in your head, but it's your thoughts and stuff as well. 

Particularly when it was the first time - well, this was early on in my recovery, actually - I stayed at my sister’s house; I lived with her for the first year of Uni, and I used to get the bus. It's like a five-to-ten-minute walk down to the bus stop. I'd walk down there, and I was in charge of locking the house, and I was that paranoid that I must have checked it was locked about ten times.  

I'd gone down to walk down to the bus stop and the bus was coming and all I could think of was ‘have I locked the door’, and then you just think I better go and check. And so, I went back, missed the bus and you know, I'd lock the door, of course I had, but if I hadn't have gone back to check, then I would have just been constantly paranoid about that. 

Ashwini 00:03:28 - 00:03:36 

That must be quite disabling in a way. Just, you know, having that, sort of being gripped by anxiety to that degree. 

Brooke 00:03:36 - 00:04:15 

Yeah, it's still quite a new thing, isn't it anxiety? It's not something I ever thought that I had, but it's something that I definitely have to deal with. It's one of those things, isn't I - everybody says I've got it, you know, my memory is bad and I get tired as well and they try and sympathise with you, but it's tough and it must be definitely worse for people with brain injuries.  

I think a big thing as well, hopefully, to come out of this Brain Injury Week is not to be ashamed because, you know, for all this time, I’ve not wanted to be seen as disabled because I thought it was something to be ashamed of, but it's not! All it means is that you've lost the ability to do something. 

Ashwini 00:04:15 - 00:04:42 

Yeah, but perhaps also gained the ability to do other things. I mean, it's interesting talking about your anxiety - you're someone who seems to be very comfortable talking to hundreds of people, you know, huge audiences, about your experiences of living with brain injury, which for so many people would be terrifying doing that kind of public speaking. But then your anxiety affects you in different ways. For example, if you were to go away for the weekend. 

Brooke 00:04:42 - 00:05:31 

I wasn't a confident kid at school – I was not unconfident, but I wasn't like, I wouldn't go and stand up and speak in front of loads of people. I, you know, I didn't use to like people looking at me, and now it just it doesn't, it's not something that bothers me at all. 

But I go away quite a bit like I go stay at my mum’s or go stay with friends for the weekend and I have like a holdall bag or little suitcase that I take. If you look at the effects of a frontal lobe head injury, it’s your planning, your organising. Having to organise what I'm going to be wearing for the weekend and having to pack my bag absolutely terrifies me. You know, give me standing on stage and speaking in front of a thousand people over packing a bag any day! And that’s the hidden disability because that's something that I, you know, uniquely worry about. 

Ashwini 00:05:31 - 00:06:06 

Yeah, yeah, and that's the point - it's unique to you and I think with a brain injury, you've said it before in other episodes that you've seen one brain injury, you've seen one brain injury – everybody’s is different. It affects them differently, and I think it's important when raising awareness about brain injury that there is no one size fits all, that people are affected in different ways. So it's having that understanding and empathy that just because you might know somebody with a brain injury and it affects them this way, it doesn't mean that's the same for everybody else. 

Brooke 00:06:06 - 00:06:27 

Yeah, I do; I know other people with brain injuries who are more, I'd say, more obvious than me. You know, if you saw them, you would say that they had a brain injury - they like speak with a slur, or they walk with a bit of a limp. But then often they won't have, like the, you know, they won't have the fatigue issues that I have, and it really does affect everyone differently. 

Ashwini 00:06:27 - 00:07:19 

You mentioned before that you used to try and hide it, or you know, pretend that there is nothing wrong and you've come to the realisation that there's nothing to be ashamed about. And I think that it’s important that sharing can be helpful, but obviously, it's very personal to the individual. Some people feel comfortable sharing information about them, other people don't want to.  

I know I've certainly had clients who haven't wanted to let onto sort of wider networks; colleagues or people not as close to them that they're struggling because they want to appear in inverted commas ‘normal’ and not sort of stick out, not, you know, not be different to everybody else. But I guess like anything, the more awareness and the more understanding there is around an issue, the more acceptance there is. 

Brooke 00:07:19 - 00:08:20 

I think that's a shift in like society as well. I mean, I've lived with this condition since 2007, and I've seen a massive change in that. I mean, I came from Manchester, where there was a little bit and then I went back to my parent’s house in Scarborough, and there was literally nothing. But now it's a lot more; it’s a lot more common knowledge than it was then.  

So I think it's definitely going in the right direction, but there is still a way to go; there’s still more that people could understand. What tends to happen is people who you know who want to understand more will look into it, and they are the ones who do understand more, but generally, the public still don't really know much about it. 

But I think with the mainstream media and stuff, I think Louis Theroux did a documentary on it, and for people who listen to Joe Rogan’s podcast, he speaks about it a lot, so it's going in the right direction; it’s just going be a little while longer, I think. 

Ashwini 00:08:20 - 00:09:06 

Yeah, and you're right, it does need more awareness, and there is certainly an increasing awareness, I think, generally about hidden disabilities. We've spoken before about the sunflower lanyards and especially during covid; I think you saw more of those about as people wore them to explain why they couldn't wear a mask. So the more awareness there is that's raised, the more people are accepting. 

But it's interesting because I mean, looking at the statistics from Headway, there were almost 350,000 admissions to hospital between 2016 and 2017 with acquired brain injury. That's in the UK, but that's a significant amount when you think about it. 

Brooke 00:09:06 - 00:09:07 

It’s a lot, isn’t it, yeah, it's huge. 

Ashwini 00:09:07 - 00:09:17 

And yet, for some reason, brain injury doesn't feature as highly as it could do in terms of when people think about disability, so hopefully, things are moving in the right direction. 

Brooke 00:09:17 - 00:09:30 

What's the reason for it? I think, what I understood it to be, is that medical technologies have come on so much that they're able to save more people now than they wouldn't have otherwise had been able to. 

Ashwini 00:09:30 - 00:10:14 

It's interesting, though. I remember going to a talk many years ago with somebody from Headway UK, and I think he'd worked with, I want to say, the Stroke Association or something similar. And I think the feeling was that a lot of money is poured into research for things like cancer or stroke, where there’s something that can be prevented or potentially cured, whereas with brain injury, it's a permanent state of affairs, so there's perhaps less appetite to fund research into it because once you have it, you have it. I don't know if that's still the case, but you know when it's something that affects so many people, and I mean the statistics I gave you, there were just for acquired brain injuries.  

Brooke 00:10:14 - 00:10:16 

A lot of people have it as well that don’t even know they’ve got it. 

Ashwini 00:10:16 - 00:10:36 

Yeah, absolutely. And some people will have an organic brain injury; it might be something that's, you know, from birth, it could be something that's traumatic, it could be something that's come through disease or illness. So yeah, I think more and more people are affected than we realise. We just need to raise more awareness around it. 

Brooke 00:10:36 - 00:10:42 

Keep pushing by things like the Brain Injury Bites podcast! 

Ashwini 00:10:42 - 00:11:08 

Haha, I guess yeah - and listen and subscribe! 

I think sometimes as well, without the outward signs of injury because it's a hidden disability, people can underestimate or misunderstand the impact of brain injury. Brooke, why don't you share some of your experiences in terms of interactions with members of the public and how your presentation has been perceived differently. 

Brooke 00:11:08 - 00:11:54 

A big thing is with doormen on pubs, say. There was one particular incident recently where I went into casinos – I was with a friend, and yeah the door staff wouldn’t let me in because I guess maybe I was really tired and when I get tired, all the symptoms of my head injury come on – like I start to slur my words a little bit and maybe my balance isn’t great – but I was alright. So I went to go to the casino, and they wouldn’t let me in. Thankfully, my friend had gone into the casino, explained to the manager, she took my card. I’ve got a brain injury card from Headway, which I would wholeheartedly recommend to anyone, and she showed it to the manager and they let me and it was fine. But without that brain injury card, I’d have just been treated as another drunk. 

Ashwini 00:11:54 - 00:12:15 

So, just to recap on that, and again, we have discussed this in previous episodes. Headway UK produces a brain injury card for survivors of brain injury. They are free to apply for, the information is on the Headway website and the card is specific to the carrier, so it will feature your photograph and it lists; I think is it up to three or five? 

Brooke 00:12:15 - 00:12:17 

Three different symptoms that you’ve got, yeah. 

Ashwini 00:12:17 - 00:12:47 S 

Yeah, that are specific to you for your brain injury, so if you struggle with fatigue or slurring your words or memory, anxiety, and anybody with a brain injury can apply for one. The link will also be in the footnotes to this episode. 

So thinking about invisible disability and this idea of wanting to pretend like nothing’s the matter, or you know, that you're open quotes ‘normal’. 

Brooke 00:12:47 - 00:12:50 

The word is neurotypical, I think! 

Ashwin i00:12:50 - 00:12:53 

Neurotypical, or is it or is it neuroatypical? 

Brooke 00:12:53 - 00:12:57 

You’ve just one-upped me there – I thought I was clever then! 

Ashiwni 00:12:57 - 00:13:14 

And thinking about being honest and sharing how your disability impacts you - if nothing else, to show that there's absolutely nothing to be ashamed of, but also potentially being able to help others going through something similar. 

Brooke 00:13:14 - 00:14:18 

I think in the past, I've always wanted to be; I was kind of always ashamed of the fact that I had a brain injury. But with it becoming more common knowledge, you know, it's nothing to be ashamed of and it shouldn't be. All it means is that you know you've got a disability – you haven’t got the ability to do something that you once did. That's all it means. 

I've got to the stage, I guess in my recovery that I can present to, you know 95% of people as if I've never had an injury at all, and you know, you just want to be treated like the rest of the population. But I think it's getting to the point where, there's becoming more and more common knowledge about it. I do need to be more open and honest about it and you know, at the end of the day, it's nothing to be ashamed of is it? Like I used to, for some reason I had this shame of disability, but all disability means is you don't have the ability to do something that you once did anymore. Like you were saying, Ashwini, that I can now stand in front of 1000 people and speak so different powers come from different situations, yeah. 

Ashwini 00:14:18 - 00:14:42 

With great power comes great responsibility! 

I think also by sharing experiences and showing that there's nothing to be ashamed of, it helps to remove the stigma of disability. I mean, if you think about even just mental health issues generally, there was a time when mental health was kind of a bit of a, you know, a taboo topic or it just wasn't talked about. 

Brooke 00:14:42 - 00:14:45 

But that’s definitely turned around at the moment, hasn’t it. 

Ashwini 00:14:45 - 00:15:04 

100%. I mean you look at workplaces now and you have workplace mental health first aiders, there's so much more discussion around the impact of mental health on both men and women and all genders and talking about the impact of mental health. So the more it's talked about, the more commonplace it becomes. 

Brooke 00:15:04 - 00:15:08 

And there’s nothing to be ashamed of – it’s the same as what needs to happen with brain injury. 

Ashwini 00:15:08 - 00:15:18 

Absolutely, so hopefully getting the message out there that brain injury is just another way of living will help people to understand that. 

Brooke 00:15:18 - 00:15:28 

What always put me off mentioning it and this is what I perceived that people thought of is when I mentioned brain, it just kind of sounds a bit frightening. 

Ashwini 00:15:28 - 00:15:53 

Yeah, and I think that's it, it's a fear of the unknown. People are naturally frightened by what they don't know or don't understand. So the more you bring it up, the more you explain it, this is how my brain injury affects me, the less that people will be fearful of it, and they'll be more inquisitive and ask questions and understand and empathise. And that's surely what we're here to do. 

Brooke 00:15:53 - 00:16:07 

Yeah, in the past I’ve found that people who want to understand, tend to look into it but, you know, there’s people that if it doesn't affect their life, then, you know, why would they look into it. So I think the general public talking about it more then it will become more common knowledge. 

Ashwini 00:16:07 - 00:16:20 

Yeah, and I dare say that the numbers aren't exactly low, so actually more and more people might come into contact with somebody with a brain injury and so it's always helpful to know or at least have an awareness of what it means. 

Brooke 00:16:20 - 00:16:29 

Yeah, there's things like, you know, football as well, and they can have an extra sub can’t they for head injury. That'll bring a lot of attention to it I would think. 

Ashwini 00:16:29 - 00:17:13 

Yeah, and you know it's interesting when you watch certain soaps or yeah, sports, these issues do sometimes come to the forefront, albeit not in the most realistic of ways sometimes, but you do get characters on soaps etc. who have suffered with a brain injury or now, for example, there's more emphasis placed on concussion checks in sports because there is a recognition that impacts to the head can have quite a devastating effect.  

But yeah, the more and more it's brought into the public consciousness and the more that people talk about it, whether it's high-profile people, I mean, you know, again, you've had some celebrities that have been affected by brain injury to different degrees - I'm thinking, sort of, Michael Schumacher. 

Brooke 00:17:13 - 00:17:14  

Emilia Clarke, as well. 

Ashwini 00:17:14 - 00:17:16 

Emilia Clarke, Richard Hammond. 

Brooke 00:17:16 - 00:17:17 

Richard Hammond, yeah. 

Ashwini 00:17:17 - 00:18:25 

James Cracknell. Marc Almond, I think as well. 

So to sum up, some help and advice for our listeners. We've talked about the Headway brain injury card, which is free for UK residents suffering with a brain injury to apply for. This is an easy way to show people how your brain injury impacts you.  

We've talked about encouraging people to be open and honest with friends and family about their injuries. Explaining the impact that it's had and how their friends and family can potentially help them.  Not to feel ashamed about it, not to try and hide it because there's nothing wrong; it's just as Brooke says, a different way of living.  

You can also signpost friends and family to resources. Do check out the resources on the footnotes to this episode, including the Headway website. And although the Headway website is a UK based resource, it is something that can provide a lot of help and guidance to all our international listeners as well.  

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