Table of contents of this Concussion Stories episode on Concussions and mental health:
01:42 Traumatic brain injury: a silent epidemic
04:33 How to deal with a concussion
09:06 Recognizing mental health after a concussion
11:40 Health-related quality of life
17:48 The impact of CENTER-TBI
Introduction to this episode on concussions and mental health
Mental health is a big thing when you have a concussion. However, almost no doctor talks about it. And you most likely didn’t expect it. So you’re left to figure it all out by yourself. Well, until you found this Concussion Stories episode! Professor Lindsay Wilson and I bring it all in the open. I hope that the least you get out of this episode is that you are absolutely not the only one who experiences psychological side effects while dealing with your concussion.
Please keep in mind that a concussion is a so-called mild traumatic brain injury. If we say TBI in this conversation, this means traumatic brain injury.
[0:00 Melanie] Welcome to Concussion Stories, a Lifeyana podcast series filled with hope. I’m here to let you know that you are not alone in your concussion recovery. I’m Melanie and I spent more than six years experimenting, training and learning in order to heal myself from a very bad case of post-concussion syndrome. And today, I feel better than ever before.
In Concussion Stories we dig deep while discussing hopeful stories of recovery as well as the hard stuff in the messy middle. If you’re struggling to focus, be sure to take breaks. Down in the description of each episode, you can find a table of contents in case you want to skip ahead. Let’s dive right in.
Professor of Neuropsychology Lindsay Wilson
I’m so happy that you tuned in for the second part of my conversation with professor of neuropsychology Lindsay Wilson. In the previous episode of Concussion Stories, we already covered the first part of this interview.
So, of course I already introduced Lindsay to you before, but I will just do a short recap. Lindsay is Professor of Neuropsychology at the university of Stirling in the UK. And he is also part of CENTER-TBI, the enormous research group that’s been studying traumatic brain injury for the last 10 years already. So that’s how he is related to Emeritus Professor Andrew Maas, whom you can listen to in 2 previous episodes.
As a neuropsychologist, Lindsay talks about the emotions and side effects that come with concussions. I can’t wait to share all the recognition and acknowledgment that he is able to share with us today, with you. So without further ado, let’s start where we left off the last time.
Traumatic brain injury: a silent epidemic
[01:42 Lindsay] Traumatic brain injury has been called a silent epidemic, because it consists of changes and disabilities that are not obvious to other people. So that is certainly a key issue. And part of this is, people with traumatic brain injury understanding that they may need help, and that they should seek help and also involve the relatives and carers so that they’re informed about the kinds of changes that might have taken place.
[02:24 Melanie] Yes, and sometimes it’s hard for people around them to understand because their lives continue. So it’s hard to stand still, and to really be empathetic about what someone else is feeling, of course, especially if it’s invisible.
How to include loved ones in your invisible struggle
As a neuropsychologist, do you have any way in which people can maybe take the time or take a moment with other ones and make clear that they need some time with them and some understanding?
[03:01 Lindsay] Yeah, it the key thing here is, is the insight that the person has into their own difficulties and how they manage them. And some people will understand understand what their difficulties are, and will be able to tell the relatives. Look, my memory is not as good as it was. Sorry I forgot your birthday, but it’s just the consequences of the traumatic brain injury. But others other struggle with this.
And so I think get getting help of one kind or another, which can be counselling or other types of direct help, not just to the person with the TBI but also to relatives and people around them. I think that can be really helpful.
Find the person who can best help you
[03:55 Melanie] Yes, I think that we absolutely agree on this: the absolute worst thing that you can do, even though it’s really hard to ask people for help, or to ask people who aren’t as empathetic for help, or to ask people who are living their lives and then didn’t even see what was going on with you for help.
The worst to do is not ask anyone or not even try, because that really stimulates the isolation. And the most important thing you can do is reach out and find who’s best for you to help you, right?
How to deal with a concussion
[04:33 Lindsay] Yes, exactly. I mean, what you refering to are coping strategies and things that are positive. Positive ways of dealing things which are very important after brain injury. So that that people identify the kinds of problems they have and use constructive problem solving ways of dealing with them, rather than just putting them aside or denying them or not telling relatives that they have difficulties.
[05:09 Melanie] Yeah, that’s what I did. That didn’t help. And yeah, it’s it’s really hard and I know for people it’s really hard. To make it more practical, you talked about coping strategies, can you tell our listeners a bit about what they are, and why they are so important for concussion recovery?
Helpful coping strategies
[05:33 Lindsay] Yes, I mean coping strategies are the ways that we deal with stress in our life. And so everyone has coping strategies that they use and apply. And some coping strategies are helpful in the long term, such as trying to identify the source of stress and dealing with it, trying to minimize the stressor itself. Another positive thing to do is to adjust your own emotional reaction to stress so that you’re not taking it as badly as you might have before.
Maladaptive coping strategies
But certainly the ways that are less positive are called maladaptive coping include things like just ignoring problems or hoping they’ll go away. And generally not doing anything, but just… And you can get some comfort in the short term from from such strategies, but you end up with with a greater problem down down the line.
So coping strategies and having positive adaptive coping strategies is really important in terms of solving the day to day problems that arise after TBI of any severity.
Melanie’s maladaptive coping strategy
[07:07 Melanie] Yes, and this is very recognizable, I believe, for a lot of us. For me, very much so. My worst coping strategy was… I was eating, in such a way that I would get so tired of eating, so I would eat so much that I would fall asleep. And then I would spend time sleeping instead of hurting.
And that’s another example of very maladaptive strategy, because in the end, I had to clean up all of that mess as well, because I wasn’t healthy afterward. And also, you have to unlearn all of the cravings and all of the things that you create with such a strategy.
Choosing constructive coping instead
Whereas if I would have – instead of eating – I would have gone for a walk every time I wanted to eat, for example, I would have stayed fit, I would have seen sunlight, I would have maybe talked to someone and would have gotten into touch with people. And that would have been more of , yeah, constructive coping mechanism. So yes, these are very, very important.
[08:32 Lindsay] Yeah, thank you very, that’s a very nice, I mean, it’s a very nicely told example, Melanie, of the way in which these things work. And undoubtedly, if people adapt more positive strategies, then the problems can be diminished.
[08:52 Melanie] Yes. Yeah, indeed. So if I would have done this, I would have recovered also so much faster. So that’s really the importance of, of coping strategies.
Recognizing mental health after a concussion
It’s really nice to talk about this with you, because during my recovery process… This was also the first time that I talked with Andrew Maas, I also had this experience that: wow, someone who studies this field recognizes everything that I talked about. It’s really a miraculous experience for me, because all of these years, I felt like computer says no with the doctors. I felt like I was talking to a wall… Let alone emotional recognition, that’s something that’s very new to me, and I really appreciate it.
[09:47 Lindsay] Yeah, there’s, an education that needs to be done among doctors as well. Because they’re often not aware of the kinds of problems that people have after after traumatic brain injury. I mean, a GP for example, will only see a relatively small number of people with TBI, so they can’t really be expected to understand the understand the condition very clearly.
[10:17 Melanie] No. And I also understand that from neurologists, who see a lot of people with traumatic brain injury. They have so little time, they have to adhere to protocols, because otherwise everything will be a mess as well. And for so long, there has been so little research into brain injury.
Translate CENTER-TBI findings into direct patient care
So it’s really good that you have been doing this project, CENTER-TBI for so long already, and that you’ve gotten so much insight. Everything is starting to change. But still needs a long time also to really get into direct patient care of course.
[10:56 Lindsay] Yeah, exactly. The CENTER-TBI project has been very successful in terms of advancing understanding, but they’re still quite smaller steps. Because as I say, the brain is such a complicated organ and the whole of traumatic brain injury in the way it affects people is such a complicated business.
Using concussion research to heal
[11:19 Melanie] Yes, but there’s a lot of reason to be hopeful. And in the meantime, we still have these kinds of conversations and a lot of materials, also on Lifeyana, where we can help people move forward already with everything that we learned in the in the meantime.
[11:37 Lindsay] Absolutely. Yeah.
Health-related quality of life
[11:40 Melanie] Yes. Yeah. I have one more question for you. There’s this abbreviation that you use in your research. I’m going to look it up. It’s HRQOL.
[11:54 Lindsay] Okay. Right.
[11:56 Melanie] I was very interested in this. Um, can you tell me a bit…?
Capturing the effects of traumatic brain injury
[12:01 Lindsay] Okay, the HRQOL stands for health-related quality of life. So quality of life is just a summary of everything in your life and how you feel about it. What your quality of life is, consists of different things for different people. But at the end of the day, it’s somehow a summary of the generally how you feel about your life, positive or negative.
And the health-related part is the implications of health conditions for that positive or negative feeling about life. So health-related quality of life as a way of summarizing the effects of traumatic brain injury, but the effects specifically for the person themselves about how they feel about it. Their perspective on the consequences of the TBI.
Traumatic brain injury and quality of life
[13:02 Melanie] And what have your main findings about quality of life and concussions or maybe traumatic brain injury, a bit broader, been?
[13:17 Lindsay] Well, one of the key things is – like other areas – is that people’s health-related quality of life can be impaired after after quite a minor injury.
So you find people with poor quality of life for one reason or another after mild TBI. And trying to understand why they have their have poor quality of life is one of the ways in which you can get to the kinds of problems that they might be suffering and the way that that you might help them.
But on the other side, we also find the people with severe TBI often have quite positive quality of life. Even people who are left severely disabled after injury can have can have good quality of life. So that’s actually a very positive message and it’s an important one for people treating TBI, not to feel that inevitably people have poor quality of life because that certainly isn’t true.
Overcoming trauma and adversity
[14:25 Melanie] That’s very interesting. Do you know, Professor Stephen Joseph from University of… Notthingham? I don’t remember exactly which university he is on. He is… I think he is a psychiatrist. But he has written about overcoming trauma.
And he has written a lot about people who have suffered so much adversity and have come out in a way that they describe that they are so much happier and more fulfilled afterward. And this to me was… Reading this really helped me find a way, because I wanted to have that. I wanted to have my stupid accident and all of the shitty results to make… build a greater life.
And it worked in the end. But it gave me so much hope. And it’s really beautiful, that if you say this about the severity of the injury, that people can even have a higher quality of life… It makes me think of that.
A positive life after traumatic brain injury
[15:43 Lindsay] Absolutely. I think it’s a very important message for people after TBI that you can have a very positive life afterwards. Even if it’s a severe TBI and you suffer a quite severe disability functionally, you can still have a very positive life. So that certainly I think is important, and many people do describe these positive things from coping with the effects of TBI.
Health-related quality of live and coping mechanisms
[16:25 Melanie] Yes, yes. So is that something that you discovered, that the health-related quality of life increases when people’s coping mechanisms become more constructive?
[16:38 Lindsay] Uhm, that’s not something that we’ve studied in CENTER-TBI, but yeah, that’s right. That’s certainly what people find, that if you use positive coping strategies, or adaptive coping strategies, your quality of life is better than if you’re using so called maladaptive strategies like avoiding things or denying them.
[17:03 Melanie] Yes. So in that way, it will help make people feel so much more optimistic about their outcome, right away, instantly, almost, if they start using constructive coping strategies.
A sense of control
[17:22 Lindsay] Yeah, it gives people the sense of being in control of what’s what’s happening to them. Yeah, absolutely. And so it can immediately give them a much more positive perspective on things.
[17:37 Melanie] Yeah, that makes something as abstract as coping strategies very fun. Right away. Yeah, it gives power right away, I think.
The impact of CENTER-TBI
Um, let me see, I’m just looking through my questions real quick. Yeah. My final question for you. What is your hope for the work you do with CENTER-TBI? What would you like for it to bring about?
Changing concussion awareness
[18:11 Lindsay] Well, I think we can get a better understanding of traumatic brain injury, and I think particularly mild traumatic brain injury. Because what we see in the CENTER-TBI study is a large proportion of mild, supposedly mild, TBI. And I think the study will yield new insights into mild TBI.
And one of the nice things about CENTER-TBI is that it’s such a large study. And there’s also a parallel study in the United States called TRACK-TBI, which is another large study. And if both these studies get the same results, then that becomes quite influential for people in the field. And people begin to take notice.
And I think that that for me is one of the really optimistic things about CENTER-TBI. It can really change people’s opinions about… because it has enough weight. It carries that weight to change people’s minds.
The uncharted territory of concussion research
[19:26 Melanie] That’s a wonderful perspective. And it stands out to me that you say: change people’s opinion. It really feels to me like that time when people still felt that the world was not round. And then people knew in the end that the the world was round. Um, it’s a really strange era that we are in right now, I think. That we may look back on later and say, wow, we really didn’t know a lot about it.
[20:05 Lindsay] Yeah, absolutely, Melanie, and I think that’s right. And certainly the is one of these largely uncharted territories that we’re still just exploring and we’re just really beginning to understand.
Closing this interview on concussions and mental health
[20:22 Melanie] But you’re moving forward. And I really want to thank you for bringing the psychological side effects of TBI out in the open and making the way that we feel more human. And also working hard in the end to change the protocols and change the opinions, as you say. So that people will feel that they are recognized but also that you, in the end, help people recover and feel better.
So I want to thank you for that. And for your time with us today.
[20:58 Lindsay] Well, thank you again for inviting me, it’s been a very interesting conversation.
[21:04 Melanie] It’s been for me too.
What do you take away?
[21:07 Melanie] Now, I would love to hear from you. What do you take away from this episode? Is there something that you can apply to your life right away? Head on over to lifeyana.com and leave your comment now.
And if you want to hear and read more Concussion Stories, actionable steps and inspiration, be sure to subscribe to the Lifeyana email list while you’re there, so that you never miss out on new materials we constantly make for you.
If you want to support this podcast, head on over to patreon.com/confessionstories. Thank you for listening to this Concussions Stories episode by Lifeyana. May you be well may you be happy.