Episode Transcript
[00:00:01] Good morning, everybody.
[00:00:03] Welcome to Glow in the Chaos. This is episode four. It is Saturday, and I hope you all are starting off your weekend wonderful and rested today. I wanted to talk a little bit about how having a chronic illness affects us as far as our emotions and our personality and how it. How it just really affects us as a whole.
[00:00:32] When I first started having the chronic illness symptoms, it wasn't.
[00:00:39] It didn't affect me as much emotionally because I hadn't.
[00:00:43] I didn't feel so much like a burden yet.
[00:00:47] Right. Like, I just barely started complaining about symptoms. So. So it's okay, whatever.
[00:00:55] But the longer that you deal with the symptoms, the more I feel like you start to feel like you are just somebody who complains and whines all the time.
[00:01:06] Like, I start to feel like a burden on my family. I just start to feel like they have to change who they are because of my illness, which I absolutely hate that.
[00:01:20] But I am so, so lucky. I have an amazing support system. My husband and my son are absolutely wonderful. They never make me feel like I am burdening them. They never make me feel like I am hurting their plans or making them change what they have to do. They actually plan our family time around how I.
[00:01:49] How I feel or how they're worried I'm going to feel. So I am so very lucky for them. I don't know what I would do if I did not have the son and husband that I have. I'm so thankful and sorry I am getting emotional. I do not tell them enough how thankful I am to have them as a support system.
[00:02:10] I don't know why this is making me tear up so much.
[00:02:13] I hope that you all have a support system like I do. And if you do, make sure to tell these people how much their support and their care matters to you, because I don't think that they have. They probably don't have any idea. Like, I don't think I could get through every single day hurting so much if I didn't have my husband and my son.
[00:02:41] Sorry, this. I didn't mean for this to be like a.
[00:02:45] A sad episode, but I'm just reflecting today and it's making me emotional because I don't.
[00:02:56] When you have a chronic illness, like, I feel like it changes so much about your personality.
[00:03:02] And it's frustrating because I sit back and I think about who I was and I feel like I'm almost trapped behind glass. Like, I can see myself. I can see who I am. I can see what I want to do. I can see that active person I want to be, but I'm trapped behind glass that I can't get out of because my body is just tired and hurting. And of course that affects my mood and that affects my personality. Like, I like to be fun, I like to be a happy person. I'm a silly person. I love being active and going out and doing things. I love shopping, I love going out to eat and spending time with my family.
[00:03:49] But when you have these flare up days where you just feel like absolute crap, it takes that away from you. It truly takes your personality away from you. So that is something that I'm sure we all struggle with.
[00:04:06] And I hope on this podcast that we can find ways to help each other cope with this, help each other deal with this feeling of losing our identity.
[00:04:20] Because that is how I feel. I feel like I have lost my identity. I feel like I am my chronic illness and, and my son who is almost 15, he is so wise beyond his years.
[00:04:33] He told me the other day that I am. That he just reminded me I'm not my illness. You know, my illness is something I have to deal with. Yes, but that is not who I am.
[00:04:45] And for him to remind me of that, it made me remember that people that know me and love me and care about me know who I am and they know me aside from not feeling good.
[00:04:59] And that, that really hit home for me. Like, that hit hard to hear that from him.
[00:05:05] It made me want to figure out how to separate myself from this illness and not make it my entire identity. Now, don't get me wrong, I love the fact that I can talk about it so much and have a community where we can, like, you know, a podcast and a blog. And it's, it's allowed me to have different outlets and connect with different people. But I do also need to remember that that is not solely who I am.
[00:05:36] So if that is something that you are struggling with, just remember that you are not your illness.
[00:05:43] You have a wonderful personality. Outside of feeling sick, you unfortunately were dealt this hand in this situation.
[00:05:56] That is not fair.
[00:05:58] But you have been dealt it. So you have to learn to cope with it.
[00:06:06] And really, I feel like we have to remember to take advantage of the days where we feel good.
[00:06:16] So when we feel good and we feel like ourself, we need to just.
[00:06:23] We need to just soak those days up because there aren't enough of them. I do feel like there's more bad days than good days lately.
[00:06:31] But in those good days, I just need to remind myself and we all need to Remind ourselves to enjoy, Enjoy what's going on. Sometimes I feel like we have guilt because we have to rest when we aren't feeling good. And I feel like we have guilt when we do feel good. So sometimes when I feel good and I want to, like, I'm out and doing stuff, I worry that people are going to look at me and be like, are you just faking every other time? Like, how can you be so sick one day and then be perfectly fine the next day?
[00:07:07] That is part of chronic illness. It comes and goes, right? The symptoms flare up and then they will die down for a little bit. And we have to get away from worrying about what other people think about it because that.
[00:07:22] That just is going to ruin our mental health.
[00:07:26] And I struggle so much with worrying about what other people think. Are they going to think I'm lazy? Are they going to think I'm faking? Are they going to think I'm just complaining just because I like ATT or the drama?
[00:07:40] And we have to change our mindset and remind ourselves that, no, that is not the case when we are not crazy. Even though I'm sure most of us have been medically gaslit and told that we just have anxiety, we need to be strong in our personalities and strong enough in ourself to know that there's a difference. We are not our illness. We are not faking our illness.
[00:08:13] However, we do not need to prove that to anybody.
[00:08:18] The ones that we love, love us. Our friends who care about us, care about us, despite the fact that some days we don't feel good.
[00:08:28] And I hope that you all have that support system as well. If you do not, please feel free to reach out on this podcast. Let's form this community where we can be there for each other, because everybody needs a support system.
[00:08:48] Having a chronic illness is so very difficult, mentally, physically, for ourselves, for the people that take care of us, for people around us, people that we work with and we. If there's any way that we can make this burden lighter for each other and people around us, then let's do it. Let's take every opportunity.
[00:09:13] Thank you so much for joining me today. It is a. Sorry, it's a shorter episode, and I'm sorry that it was an emotional episode as well. That was not where I was planning on going. But it is a heavy topic, feeling like you are losing yourself to your chronic illness. So hang in there, maybe do some journaling, maybe jot down some things about yourself that you love just to kind of bring your mind back to who you are outside of just being chronically ill.
[00:09:44] In the meantime, please make sure to glow in the chaos. Thank you for joining me.
[00:09:50] I will see you next time.
[00:09:52] You are wonderful. And glow in the chaos.
