Episode Transcript
[00:00:02] Hey. Hey friends. Welcome back to Glow in the Chaos.
[00:00:07] I hope everyone is doing wonderful.
[00:00:11] Glow in the Chaos, chronic illness, real talk and a little glow up. I'm your host, Alyssa. Before we get into date into today's topic, I just want to quickly mention that I now have a donation page linked in the show notes if you would like to support the podcast. Every donation helps me bring on special guests, try out products you've been curious about, and keep this community growing. So if you feel led to support, I would be grateful.
[00:00:37] All right, today is episode seven and we're going to talk about something heavy but very real. The negativity that people with chronic illness often face.
[00:00:47] One of the most popular TikTok videos was when I asked, as someone with chronic illness, what is the worst thing someone has ever said to you?
[00:00:55] That video reached over 65,000 viewers and thousands of comments. And as I read through them, I just felt heartbreak, anger, and honestly, a lot of familiar familiarity because I've heard many of these things myself.
[00:01:11] Sorry, I have massive brain fog today. So words coming out of my mouth are hard. Wording is hard today. I'm sure you can relate anyway. So why do words hurt?
[00:01:24] Words matter when you're already fighting your body every single day through the pain, the fatigue, medications, appointments and symptoms people don't even see, hearing hurtful comments can cut even deeper. It's not just the words themselves. It's the dismissal behind them. It's the reminder that so many people just don't understand and sometimes they don't even want to try to understand.
[00:01:49] Some of the comments people shared with me were shocking and I want to read a few of them to you.
[00:01:55] So just looking at my Tick Tock feed, I'm just gonna scroll through some of the comments. This one is a long one and I want to read this one.
[00:02:06] I have not read it completely yet, so we're gonna read it together.
[00:02:11] It says a 70 year old, 78 year old man told me I was too young to have arthritis. I was 30, using crutches because I just had surgery. And he said, look at me, I'm 78 and I move around just fine. As he proceeded to start dancing around me, I know he was trying to cheer me up and give me hope. Using himself as an example, but not exactly well thought through. He's probably still alive. He would be 99 and probably still moves and dances better than me. I think the worst is knowing people don't mean to be insensitive, but they are and don't even realize it. What's worse is if we call people out on their insensitive rhetoric. Others tell us we're being rude and we get shut down. Because after I walked away, I told my mom I should.
[00:02:57] My. I'm sorry, my. I told my mom I should have said something about how hurtful he was being. And she scolded me because he was an elder. I said, all the more reason why I should have said something. He's old enough to know better.
[00:03:09] This is so very true. I feel like a lot of times people's words, they are just trying to help us, they are trying to make us feel feel better. But they have no idea how deeply it cuts when someone compares themselves, their seemingly healthy body or their normal arthritis or normal age related arthritis to your chronic illness, arthritis or something you're going through at 30, when you can't hardly get out of bed in the morning at 30 and you are hurting, in tears, in pain.
[00:03:41] Someone comparing their pain to you, to yours is just, it's enough to send you over the edge. And I'm not saying that anyone's pain is easier than anybody else's. It's not. But I just feel like that's something that people just shouldn't comment about.
[00:03:56] They don't know the situation, they shouldn't comment about it. And like, like this says she was sure that he was trying to make her feel better. But words can be just. They can be taken in all different ways.
[00:04:11] So that's tough. And I'm so sorry that you had to feel that pain in that moment.
[00:04:19] I'm gonna go on and read a few more comments here.
[00:04:26] Just wait until you get old, then you'll know real pain. I feel like I have heard that 10,000 times at least.
[00:04:37] First of all, what is real pain?
[00:04:41] I mean, we're not. This isn't pretend pain. So what do you mean we'll feel real pain? We already feel real pain every single day again, I'm sure. Well, this one, I don't even know how this one could be taken or turned in a positive light because really they're just kind of telling you, well, you hurt now, you're gonna hurt even more later. So that one, that one's kind of a crappy one.
[00:05:07] Now this one, this one hits deep. It is such a simple statement. But it hurts so much.
[00:05:17] This one says, just don't think about it. It's all mental.
[00:05:21] That hurts so much.
[00:05:24] People just don't understand how much that affects, that affects our mental illness or our mental. I'm sorry, our, our Mental health to tell us that the pain that we are experiencing every single day or these scary symptoms, the symptoms like driving your car and feeling like you have to pull over because you feel like you are drunk, like those are not in our head.
[00:05:54] I wish they were, because if they were in my head, I have a pretty strong mind and I could make myself not feel that way, but that is just simply not the case. And it is so, so hurtful to be gaslit and to be made to feel like you are creating this in your mind or you are creating these symptoms for drama or for attention.
[00:06:16] Anybody that has ever been told this, I want you to know I am so sorry.
[00:06:21] I feel you. I see you.
[00:06:23] I know very much that your symptoms are not in your head. They may be invisible, but I know that you have them.
[00:06:30] If this is the only thing positive that you hear today, just know that you are amazing. You are fighting a battle that a lot of people would not be able to continue to fight every day. You are so strong. You are beautiful. You are amazing. Please know that. And please know that I believe you, that I know your symptoms are real. They are not in your head.
[00:06:58] Sorry, rant over. But I just. I truly want this podcast to be something where we can come and talk to each other and have a community where we know. We see you. We 100% know that you.
[00:07:17] You're hurting, you're in pain, you don't feel good, and sometimes you just need to tell somebody.
[00:07:23] Others wrote things like, you don't look sick, or it's all in your head or you're too young to be sick. And one I've heard myself many times, if you just exercised more, you'd be fine. And believe me, these are some of the milder ones. There are people who shared things that were cruel and dismissive in ways that make you question how anybody could say that to someone they care about.
[00:07:45] When we hear these things, it's not just insulting, it's invalidating. It makes us doubt ourselves. It feeds into the isolation so many of us already feel. Living with chronic illness is already heavy. We shouldn't also have to carry the weight of proving to people that our struggles are real.
[00:08:01] But here's what I want to remind you. Their words do not define you. You know your body, you know your pain. You know your limits and your reality, and no one else gets to take that from you. Instead of carrying their negativity, let's flip it into advocacy. Let's use it as proof that there is still work to do, still voices to raise still stories to share so that the next generation of chronic illness warriors won't have to hear the same hurtful things.
[00:08:29] And honestly, the most powerful part of that viral TikTok wasn't even the negative comments people reported. It was the community that came together in the comment section.
[00:08:39] People lifted each other up. They said, I've heard that too. You're not alone. They validated one another and reminded each other that our experiences are real. That's what I want this podcast to be, too. A safe space. A place where you don't have to defend yourself. A place where you are seen and believed.
[00:08:58] So if you've been hit with words that cut deep, please remember this. You're not alone. You're stronger than those comments, and you are worthy of care, compassion, and love.
[00:09:07] Thank you for tuning into episode seven of Glow in the Chaos. Don't forget to check out the show notes if you'd like to support through the donation page. It truly means so much if this episode resonated with you. Share it with a friend who might need the reminder. And come hang out with me on TikTok or Instagram to keep this conversation going.
[00:09:25] Until next time. Keep glowing in the chaos.
