Table of contents:
03:05 The harmful side of post-concussion care
06:56 Medical professionals and post-concussion recovery
10:31 Harmful post-concussion advice
13:07 Post-concussion depression
17:54 Your post-concussion recovery
Introduction to this episode on post-concussion recovery
During post-concussion recovery, many of us feel absolutely lost. This often (partly) originates from our conversations with doctors. We are checked for clear injuries, like a brain bleed or an inability to find words, and when we don’t have them, a lot of us are sent home.
After a while, our concussions turn into post-concussion syndrome. And when they do, many of us hear that we need to learn to live with our symptoms, that our symptoms might be due to stress, or that our brain damage will very likely never recover.
These are truly harmful messages, especially because so much about post-concussion syndrome is not yet understood by science, and one can never predict the outcome of another person’s recovery. Moreover: both science and my complete recovery show that there is hope!
Let’s dive into this all new Concussion Stories podcast episode.
[0:00] 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 and 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.
Post-concussion recovery CAN be done
[0:46] This episode is dedicated to the topic of doctors or medical professionals and post-concussion syndrome. I really want to talk about this topic because I know a lot of you are struggling with this. And also, it’s a topic that’s very close to my heart. It’s something that I’ve been struggling with so much.
And it still gets to me every time one of you shares a story with me, in which it appears again, that a doctor hasn’t been able to help you, but didn’t state it in a way like: I’m sorry, I can’t help you, but maybe this this person can. Instead stating for example: something can’t be done.
And this is really a flaw in… if I may say so, humbly… in the medical system today. And I want to talk about this topic, and I want this episode to be very helpful for you.
You are not alone
So the way in which I want to make it helpful instead of something that we’re complaining about is: first acknowledging what is happening for a lot of us. Not for all of us, luckily, and there are really some really good doctors out there who know what to do with you. So what I want to do is acknowledge what is happening, so that you know that if you have experienced things like this: you are not alone.
You have control over your concussion recovery
And also I will help you frame what is happening. And then we will end this episode with what you can do. Because you can do so much. You are the real expert, bottom line. You know yourself, you know your body, you know something’s wrong, you you feel this unexplainable urge that you wanna do everything that’s needed in order to get your life back.
So you’re the expert, you can take control. Once you set your mind to it, something… it really shifts. You are the person who says: I’m taking control. Nobody can tell me what I can or cannot do, I will define my own limits.
And I can tell you from my experience, once I set aside all those limitations that others told me about and I myself accepted, I discovered that my brain is capable of so much more than all of those doctors apparently knew, but also than I knew about myself.
The harmful side of post-concussion care
[3:05] So you can already hear in my voice probably that I’m very excited about this. But first, before we get there, I want to share with you the whole story of my experience and the things that you probably recognize. So that’s the more serious stuff, because I think it’s very harmful what happens – from my perspective oftentimes – in the medical system with regard to post-concussion syndrome.
Concussion support doctors
A few months ago, I went see a doctor. Not for me, but for you. Because I’m gathering all of these experts around me right? I’m trying not to help you only from my perspective: I just want to give you all the best information that is available, not just from my perspective.
So I was talking to this doctor because I thought that maybe she would be able to help me support people in the Cure My Concussion course. And she had been very open to all of these new scientific findings about the gut and the brain. And well, interesting conversations we’ve had before. So this was a person that I had a very good feeling about.
My post-concussion story
[04:22] I shared with her my post-concussion syndrome story, like in a minute or so – just a pitch. And I asked her, what else she thought that I could have done. Like, I was just trying to see where she was at. So what she was thinking about the topic.
She said… “Yeah, I just can’t shake the idea that it must be psychological in one way or another.” That was it. No further comment. Just that.
Now I’m just now trying to calm myself: my hands are on my chest, just to calm my heart. Because this really hurts. It’s… I’m gonna reframe this in a minute. But I just want to give the space to whatever’s happening here. Because these are the the “verdicts”, I’d say, or the the remarks that are being made by people we respect. People we rely on when we’re at our worst.
We rely on doctors for our recoveries
[5:37] A lot of us don’t ask for help that much. And then when we do, and when we feel like we’re lost… Because it’s not like you can Google and then find out that there’s a clear solution for your injury and you will go to the doctor and say you need it, right? The information about this is very diverse, is very negative in general.
That was my experience, and I still find that to be true today. And then you go to the doctor and say: “Okay, I really hope that you know a solution.” And then they say something like this. There’s something wrong with the system with regard to post-concussion syndrome.
DO check everything with your doctor
And it’s very important to respect your doctor and to be very conscious about visiting them, especially going through all of the protocols, checking everything that you can. That’s so important.
But then, if sometime they tell you that something can’t be done and you believe that you need to fix it because otherwise you’re going to lose your identity because everything is going downhill, it’s so important to save yourself. And saving yourself means that you take control. You don’t let others define your boundaries.
Medical professionals and post-concussion recovery
[6:56] I want to create the space for you right in this moment where you feel that: “Okay, I haven’t been the only one.” I want to tell you that I speak with a lot of people with post-concussion syndrome. In the course, in coaching… But also, I’ve researched so many patient cases during the years because those were very important for me in order to find a solution to my concussion syndrome. And also, I of course speak with a lot of people who haven’t been able to find a solution or who have, and who are sharing with me their stories.
Post-concussion recovery stories
And more often than not, as in I would say… 97% of the time, people tell me these kinds of stories. People tell me how doctors haven’t been able to help them with their concussion recovery or post-concussion syndrome. But moreover: have even limited them in their belief that they could recover. And that there even would be improvement possible, if not recovery.
We are wired to follow experts
[7:59] And this, I think, is very harmful. I say this without judgment to the doctors personally, because when we are looking for help we see them like people in white coats, people who have been studying for, I don’t know, 8, 12, 14 years – I don’t know how long it has been for them – but they are the experts, right? And there’s a wiring in our brain to trust them.
But then they tell us something can’t be done. And we accept it. That’s the second part, right? Someone can tell you. And it’s very, very understandable that you accept the limitations they set. I did that too. It’s the wiring I talked about. But in the end, you have a choice. You have a choice to accept or reject whatever limitation someone else sets for you.
Lost in my post-concussion recovery
So but these doctors are doing their best. And I also want to say that the doctors who haven’t been able to help me and who have even – well, bottom line, I did it myself – but their advice has cost me years in my post-concussion recovery. In Dutch we say that “they sent us into the forest”. I couldn’t see the way out because of the things they said.
And that’s very damaging to a person’s recovery. That has been damaging to my recovery. And I know that so many of us suffer from mental health issues, because of the negative outlook that a lot of us have of our recoveries. So that is why I say that it is very damaging.
Doctors do their best
[9:42] But, I know that they are limited by the time they have with us. So for example, in the Netherlands, we only have about 10 to 20 minutes with a doctor and 20 is like if you book double. And also, the neurologists I’ve seen were middle aged men. And they have been studying, I don’t know, in the 1970s or so? So they have outdated knowledge.
And also, with their very packed schedule, however would they find the time to read up on the newest, newest, newest scientific materials that are available to you and me? To them too, but they just don’t have the time to do all that. I understand how this works. For me, it’s the same with other things. You always have to choose what to spend your time on.
Harmful post-concussion advice
[10:31] One thing though, that they can do differently and that I don’t agree with and that I always will very, very clearly oppose to is: when someone – so in this case, when a doctor – doesn’t know something, they should never say something can’t be done.
If you don’t know, say that you don’t know something. And even if you want to have a positive impact, refer to someone who might know, even though they might not know, but they can refer to someone else. And in the end, someone might have a chance to find out what the answer is.
Never limit someone’s recovery potential
I’m also very aware of this with Lifeyana. Whenever I don’t know something, that I tell you I just don’t know. I have to figure it out, or find this and this person to figure it out yourself. But I will never, ever limit the possibilities that you have in your mind for your recovery. That is very harmful.
[11:32] So what a lot of doctors have done, in my case, is set limitations with regard to my post-concussion recovery. Or questioned my judgement with regard to my health. So I know what is happening to me, because I’m an expert in myself: I know something’s changed. That’s just enough, right?
Doctors questioned my sanity
And then someone tells you: “Are you sure that it isn’t all in your head?” “How do you know that you don’t have any stress?” Or: “Have you talked to a psychologist yet? Shouldn’t you do that first?” Like, all of these question marks with regard to your sanity, or your methods of determination whether or not you’re ill. Or with regard to the persons you have talked to, or with regard to your own judgment.
And this, this is something that for example, with Lifeyana, if you tell me you have post-concussion syndrome, you have post-concussion syndrome.
Don’t limit someone’s recovery potential
I very, very strongly ask – if any doctors are listening, or if anyone is listening at all, any relatives – whoever doesn’t really know what is going on for the person with concussion syndrome, or with any other invisible his illness for that matter. If you don’t know something, say that you don’t know it. That you want to help so badly, but you don’t know it. Don’t set any limitations to whatever is possible for that person. That’s the most important thing.
[13:07] After doctors told me that I couldn’t recover, that I had to learn to live with my symptoms, I lost my sense of identity because of having lost this perspective of a better future. I was envisioning my future with all the symptoms in there. And my life was deteriorating. So everything was going downhill.
And I couldn’t look toward a positive future anymore. And I couldn’t be positive anymore. So I could force myself to do something positive, but I couldn’t feel it. And it wasn’t, it certainly wasn’t my first thought. My brain started to offer me death as a way out.
If you have thoughts about ending your life and you don’t trust yourself with them, contact the help line of your country right away. They are trained to be there for you, so do not hesitate and call them.
Mental health after a concussion
[13:55] And those were things that at the time I was very unaware of. So I think it’s because of both my symptoms, so I had trouble thinking constructively, thinking my way out of things. But also, because of the depression, I wasn’t very aware of my mental health.
And I was certainly not aware that I had to take care of that. I didn’t know… I had a concussion. In my mind, I just had a concussion. I didn’t know that all of these side effects were a part of that.
The point I’m trying to make is that: had I not heard that my future would not be different than my present at the time, and had I then heard what I’m trying to tell you everywhere you hear me: that there are is so much that I could do. And that there are things today that I could do that will make such a difference, tomorrow, the day after, in one month, in three months, and in a year, then I would have done them. And I would have felt the power.
I wanted someone to guide me
And especially… This was something when I was still seeing myself as a victim, before I took control over everything I could do, I would close my eyes, and I would reach my hand forward, I think you could see it as some sort of prayer, I would close my eyes and would just wish for someone to take my hand. And to take the lead. And to tell me what to do. That was the thing that I wanted most of all.
And that’s the one person that I want to be right now. So I don’t just want to tell you that there’s something you can do, or something? So much. And that today, you can even make the difference in how you feel tomorrow, and a week from now.
Don’t limit your own recovery
But I also want to guide you. I want to tell you all the things – all the quick wins, all the very big wins: everything that you can do and as practical and as tangible as possible. To implement them in your life and in your lifestyle. So that’s why I’m telling you all of this.
I want to show you how important it is, how limiting it has been, and how limiting it possibly is for you, if someone who you respect, who you see as an authority, is telling you that there’s a limit to what you can do.
I had to take control over my recovery
It led me to that situation. And eventually, that situation triggered me – and that’s the good news – to take control. Because I realized that, normally, if I had felt better, so like I would have never sustained my concussion, I would never think about ending my life. I would never.
[16:44] So I knew logically, even though I couldn’t feel, I couldn’t have any emotions about how sad it actually was, that I was thinking of those things, I could know that wasn’t me. That something had to change. I saw myself as if I was standing on the edge of a cliff. And the one thing I needed to do was to get myself out of there. I had to move away from that cliff.
I will make a full recovery
And that was when everything turned for me. That was when I said: I’m going to reject this vision that I can’t recover. I’m going to say that I will recover. I will recover. I will find a way I don’t know whichever way it is, I don’t know how I’m going to do it, but I’m going to find a way and I will recover.
And that’s the decision that turned everything around. It starts with the belief, it starts with the determination, that there’s an alternative reality for you. That you believe that you are so powerful, beyond anything you can now imagine. You believe that this power is within you.
Your post-concussion recovery
[17:54] And one way or another, it all comes down to this. Do you dare yourself to hope and to do anything that you need to do? Do you want to take control? And do you want to say that if you are going to recover, that you are the one who has to make it happen? Nobody else is going to do it for you.
I know that these words might sound hard, but in the end, at my lowest low, I needed to feel that however loved I am, I am the one who has to do the work. I have to have help from others, but I have to ask for it. I have to make the moves.
And this also goes for you. If you want to make your recovery, you’re the one who has to make it happen. But you are not alone. So you have me! I wanted to have someone who would have helped me. Who would have said to me… I’m getting emotional about this… Who would have said to me that they had recovered.
A better future is waiting for you
That there was possibility, that there was perspective, that there would be a better future possible than I could ever imagine. And that there were tools and that there were practical steps and that they would be with me and help me to get better. That’s all that I wanted and that’s all that I want to be for you.
So let’s have a look at the things that you can do. And the most important part has to do with this personal power that you have to take control and to determine your own future. You can sculpt it. The moment you accepted that you can’t recover, this became your future.
Accept that you can recover
The moment that you accept… You can feel it right now, if you accept – if you just for this moment, okay, you can reject it later on… If for this moment you accept that you are going to recover, what are you feeling? You’re feeling like I’m going to try everything, I’m going to find whatever is possible, I’m going to listen to her, I’m going to do anything I can, right?
That’s what I would have done. And I think that’s what you would do. And you feel that this space opens up for you, that you feel that anything is possible, right? And you need that energy, you need to get momentum. You need to get started. And for this, I made a guide. So I made a guide including three things that you can do right now, to speed up your post-concussion recovery.
Take control over your recovery
Because it’s so important to get moving. It’s so important to feel – even though you have been trying a lot of things, but you’re probably feeling that you are stuck – it’s so important to feel that you’re going forward. That you’re creating more capacity in your brain. That you have the ability to make changes yourself. It’s so important to feel that you are in control.
Can I ask you something?
[20:47] 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 a on new materials become we constantly make for you.
If you want to support this podcast head on over to patreon.com/concussionstories. Thank you for listening to this Concussion Stories episode by Lifeyana. May you be well and may you be happy.