Talking About PCS
Show Notes:
Ever felt misunderstood or belittled due to an illness? Many struggle with talking about their diagnosis to others. I dive deep into the psychological implications of naming your illness and how doing so can pave the way to a more understanding and supportive environment. This episode is all about embracing your condition, remembering it doesn't make you weak but reveals your true strength.
We've got some fantastic news for you! Our support community, Concussion Connect, has become free and supported by sponsors! We understand that brain injury and concussion survivors may face financial challenges.
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Concussion Connect is a great place to feel less alone. I'm so happy to feel like I don't get judged for my situation, I can ask questions, give my opinion, and be honest without being stressed that someone will tell me I'm wrong or making it up. Thank you so much Bella, I love it here! - Member
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Please note episode transcriptions may not be 100% accurate!
Bella Paige
Host
00:03
Hi everyone. I'm your host, Bella Paige, and after suffering from post concussion syndrome for years, it was time to do something about it. So welcome to the Post Concussion Podcast, where we dig deep into life when it doesn't go back to normal. Be sure to share the podcast and join our support network, Concussion Connect. Let's make this invisible injury become visible. The post concussion podcast is strictly an information podcast about concussions and post concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussions and post concussion syndrome. Welcome to episode number 118 of the Post Concussion Podcast with myself, Bella Paige, and that's it today.
01:14
This is a really important episode, but first I really just wanted to start out with letting everyone know our very exciting news. Now, if you're in our email list, you probably have already seen this, as you got early access, and if you've been on social media, you might have seen as well that Concussion Connect. Our support community is now free, so we're doing this by getting sponsors for the platform to help cover the costs of running it, and also by benefiting survivors, because I understand how much financial stress a lot of survivors face being unable to pay for medical expenses or not being able to work or having to take a reduced schedule or just a lot of added stress, and usually financial stress is really missed. No one talks about that. After your concussion, you know there's a lot more to it than just the physical and the mental health things. Financial is a huge burden that can definitely affect our lives. So I just want to let everyone know that Please sign up. There is three screening questions, because we do want to make sure it's an inclusive, safe environment for everyone. So just make sure you fill those three questions out and then your membership will be approved, and if you don't realize it, I will make sure to email you to let you know that it's been approved so you can sign in and join in Now.
02:38
There's lots of things on Concussion Connect and here's just a small list. There's our Help Series, which is a video help series by me, basically a small YouTube series. There's Concussion News, which is just me sharing news that's out there in the world for you to see. There's downloads, which has tons of things from a discount on our coloring book that we released, a few recipes, headache tracker, symptom tracker, a feel better immediately pamphlet, and lots of things like that to help you out. There's a whole comic series where each month we have comics with a little brain. That kind of adds some joy to what we're going through.
03:18
There's lots of topics, so we talk about daily living, therapy and treatments that people are experiencing athletes, students, caregivers of course are welcome to join relationships and mental health. Now, of course, there's more things to talk about, but these are our big group of topics that kind of help organize things in a network and just keep it a little easier to find things if you're looking for something. We also have three courses available on the network and I just had a meeting yesterday about even more courses that are being added, but they will be up in a few months, so make sure you don't miss out on those and a lot more that keeps coming up. On Concussion Connect, we have support groups and even more support events are being added soon, so make sure you check that out and just go to, and you can just go to the link in our episode description or just go to postconcussioninccom, click Concussion Connect and hit Join now and you can join. Don't forget and I am so, I am just looking forward to it. So far, we have had over 80 people request to join in just a few days of when I recorded this. So don't forget to join, and I am so excited for everyone to enjoy it and I think it'll be a great, safe place for concussion survivors and brain injury survivors to go when they need somewhere separate from social media. And I had a really big problem with Facebook groups and I think that's just because sometimes the regulation in them is really not controlled. Another issue is ads, and another issue I found is that I get a lot of messages to me personally, which is totally okay, but my everyday life was attached to that. So it's kind of nice having something separate and something more private and, of course, all the large, immense benefits that Concussion Connect has beyond just a group. But I'm really excited about that. We are working on our YouTube setup so people can watch parts of the podcast instead of just listening, if that's more of your realm. But make sure you sign up today and I'm very looking forward to that.
05:17
But with that, I'm going to take a very quick break and be back to our episode for today. Did you want to create awareness about concussions? You can check out our entire clothing line through the link in the episode description or go to our website postconcussioninccom and click awareness merch from t-shirts, sweaters, tank tops and multiple designs, including the podcast. Nothing mild about a concussion and more. Make sure to pause this episode right now and order yours before you forget, just like I would.
05:49
What I really wanted to talk about today and why we're having a little mini episode here is actually something that came up in my family and that's naming your illness, and I mean like saying I have post concussion syndrome or persistent concussion symptoms, or I have a brain injury or any illness. I have cancer, I have Parkinson's, I have an autoimmune disease, I have POTS, and I'm talking about this because being upfront with it helps your confidence and it helps it a lot. Being able to use those words can make a really big difference. You know, it really helps clarify things when you tell someone I have POTS, because then they can take their time to research it. If they want, they can go on Google. They can find podcasts, they can find videos, they can find articles, they can read research articles, they can read up on it. But if you just say I'm nauseous a lot of the time or my health's not the greatest right now, or I'm dizzy some days, or I'm tired some days, it's not the same thing and it's not helpful. Because what are they going to research? How are they going to educate themselves? We talk a lot on the show about getting people to educate themselves and they can't educate themselves on PCS.
07:13
If you've never used the words, if you just say it's from my concussion, that's not enough. If it's from you hitting your head or you know bright lights bug me, you know that is okay. But you have to realize that sometimes you have to use the term, you have to name your illness, because if you don't name it, you're not helping anyone and you're not helping yourself. And I get that there's a lot of fear sometimes or it's a pride thing for some. They don't want to admit to being sick and I feel like men probably have this problem a little bit more than women and that is because you know there's the whole. Men are tough and they can't show weakness and they can't be sick. And why not? Why can't you be sick? It doesn't make you not tough. If anything, it makes you a hell of a lot stronger than anybody else. So I think using your illness and naming it also proves how strong you are, because here you are in this moment, with this illness, with all these symptoms, but you're still here, you're still doing things, you're still living your life and, like I said, it helps clarify things so people can do their own research. You know, maybe the new person you're meeting and you're going on dates, you know you're mentioning issues that you have, and I get that you don't want to scare anyone, you don't want to make them run away, but maybe if eventually you do say it, then it could have helped them so much. They could have done their own research, they could have looked up things so that they understand why not to bring you to a rock concert, why a bar might not be a great setting for you right now. It can help you. It can help you in so many different ways going to doctor's appointments, going to events, dealing with family, dealing with strangers. Naming it makes a difference and the biggest way to really understand this is this Go with a few comparisons.
09:15
Here's a couple I am sad versus I have depression or not the same thing. I am nauseous some days and I have pots or not the same thing. I have headaches, versus I have post concussion syndrome or not the same thing. And you know they're not. So why use them when you're trying to explain your illness to someone and you don't use the name?
09:43
It's not that you can't explain symptoms to people, it's not that you can't mention that you have headaches. It's not that you can't mention that you're sad, it's not that you can't mention that you're nauseous. It's that these don't help you. Really, these don't help you get across your point of what is wrong. You know people are like oh, I have headaches too, I get nauseous too, I'm sad some days too. That's where you get a lot of those comments where I get that I have depression is a really big thing to say to somebody else, and of course, not every environment is built for that. But it is very different than I am sad, and that's why I really wanted to talk about this today, because I think we don't think about this stuff as survivors. We just talk. You know You're going to an event and you need special accommodations. So you mention a symptom and don't get me wrong, that's really important. But if they could just understand what the real term is, maybe they know someone who deals with it, maybe a family member, maybe a cousin, maybe a sibling, maybe a partner. Maybe they know more about it than you think, maybe they deal with it themselves. But if you don't say the word, then they can't relate.
10:54
And I really want to talk about breaking stigmas, because conditions aren't a bad word. There's nothing bad about post concussion syndrome. There's nothing bad about persistent concussion symptoms. There's nothing bad about the word chronic illness. There's nothing bad about depression. There's nothing wrong with these words. But I think stigmas get built up around a lot of them because we don't use them, because we are afraid, because we're nervous, because we don't want to get judged and you know what. All these reasons are valid. But to get stigmas to go down, to get people to be okay with talking about depression, to get people to be okay with understanding that lots of people have post concussion syndrome after their injuries, it's okay to talk about it. But we don't always feel that way and that's okay too.
11:48
I'm not saying in every moment of your life. You need to say what you have. I'm saying think about how much you don't say it when you're explaining things to others. You know, a lot of times I feel like people just mention I had a concussion. Okay, that is true, that is real. But maybe if you added that next little layer of your story, it might help a lot of people when they're looking it up. Don't tell me people don't Google things, because people Google everything. Everyone has Google in their pocket nowadays. They always search things up, they're always looking for answers. So that is where something like that can be really helpful.
12:24
And you know, this isn't the longest episode because I really just wanted to throw it in here and I really want to talk about a few things that post concussion Inc does that a lot of people might not know about, or maybe you know about but forgot. The first one is we have our post concussion cookbook, which has been a great hit. I have gotten so many messages about it helping survivors get back into the kitchen and really loving that. You can find that on our website. We do one-on-one coaching which helps survivors. I've helped survivors from getting back into work. We got a teacher back into the classroom just this spring. We help find medical professionals. We help relationships at home, because I understand what you're going through and I think that's really important now we can do these things together.
13:13
And lastly, Concussion Connect is something that continues to grow and is there to stay. It's really here to help survivors, so make sure you check that out. There's support groups and so much on there and you know we're continuing to grow. There's a lot more things getting added and you know we're not going anywhere, so check those things out. We're here to help you and if you ever need help with something specific you don't know which place to go, feel free to send a message to the email on our website or click in our episode description and find a way there, because we can help you. I promise we can. Life can get a lot better than it might feel like right now. Need more than just this podcast. Be sure to check out our website, postconcussioninccom, to see how we can help you in your post concussion life and support network to one-on-one coaching. I believe life can get better because I've lived through it. Make sure you take it one day at a time.
09:30
The Post Concussion Cookbook is getting amazing reviews!
This cookbook was something I had been looking for! It pairs nutritional information specific to concussion recovery with tips for symptoms, and the recipes are delicious!! My husband and teenager loved it too! Very grateful to have this resource! - Halli
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