Is an Ostomy an Invisible Disability?

What if the hardest part of disability is that nobody can see it?

In this episode, we talk honestly about ostomy life, invisible disability, chronic illness, medical trauma, and the exhausting pressure to prove you are really struggling.

Today on Rewired and Desired, Trina Ricketts and Nicole Richards discuss whether having an ostomy can be considered a disability, why the answer is not the same for everyone, and how underlying illness, fatigue, dehydration, pain, leaks, food restrictions, bathroom access, and medical dismissal can deeply affect daily life.

We also talk about the emotional side of invisible illness: being told “but you look fine,” being judged for using disability accommodations, being dismissed by doctors, feeling like a burden in relationships, and trying to live your life while managing symptoms other people may never see.

This conversation is honest, personal, and a little raw because invisible disability is not always about what the world can see. Sometimes it is about everything you are quietly managing just to get through the day.

📌 Connect With Us
Trina Ricketts – The Intimate Ostomate
Website: intimateostomate.com
Instagram:   / intimateostomate 
Youtube:    / @intimateostomate 
Books, guides, coaching & resources
Coaching • Books / Guides • Resources • Intimacy Advocacy

Nicole Richards - Ostomy Innovations
Website: ostomyinnovations222.com
Instagram:   / ostomyinnovations 
Youtube:    / @ostomyinnovations222 
Coaching • Wellness • Disability advocacy • Ostomy Clothing

Transcript

SPEAKER_00 0:07

Welcome back to Rewired and Desired Podcast, where intimacy, mindset, and disability intersect. My name is Trina Ricketts, uh, the intimate ostomate, and I'm here with Nicole Richards, and she is also very intimate. Just kidding, I don't know, but today we are not talking about intimacy, even though it is one of our favorite subjects on our channel. Today we are going to talk about invisible disabilities. We're going to talk about even just the term disability, because within our community, there is different feelings about whether we consider ourselves disabled with ostomies, for instance. So we're we're going to get into that. And if you've ever had felt like you have an invisible disability and that people don't understand or you've been through some crazy shit because of it, we can relate and we're going to talk about it today. Would you like to start off, Nicole, and maybe share a little bit of your thoughts about it?

SPEAKER_02 0:58

Yeah, so I this is an interesting topic, like you said, Trina, because in the Austomy community, I've had people say from one end of the spectrum, we're disabled, and one end say we're not. Um bottom line is, right, we do have this prosthetic type colon, right? Where we use the bathroom, not like other people. I think in that sense, that makes us some have some sort of a disability, right? Um, not only that, but then the reason behind having an ostomy that led to getting an ostomy also adds in not only one to the pain, the fatigue, urgencies, leaks, medication side effects, all these things, right? Adds on to having this issue. So I do believe that there is some relevance to calling it a disability. Um, I don't think it makes us unable to live our lives, though, right? So it doesn't cause us not to be able to go out and do what we want to in life to a point and at a certain point. Because it's not until we are comfortable in our ostomy, it's not until we've mastered what we're doing that we can feel like we can go out and live our lives. And then um, to a point, there's there's things that are gonna always come up. And it is something that has to be constantly managed and constantly thought of, recognized, you know, um, taken care of. So it is, it's a little bit of both, I think. And that's what makes it difficult. And like I said, the underlying conditions really, really do make it harder. And one thing I want to say is, and we say this with invisible disabilities, is especially because in ostomy, you know, it's not just always hanging out, you can't always see it. Just like having Crohn's or colitis or cancer or any of these conditions doesn't mean you look unhealthy all the time. And so just because someone looks unhealthy doesn't mean they feel healthy. Like right now, I've been in a flare for like over a month. And um, although the scale's showing it because I've lost 17 pounds, like the scale's showing it, but uh you wouldn't know it just looking at me, right? You would not know it. And and because I've been dealing with this for so long, I can be in the earth-shattering pain and hide it from you so well.

SPEAKER_00 3:20

I know me too. Don't we get good at that? Yes. And especially in front of your children, like that was where I got the most practice, just trying not to look constantly in pain in front of my children.

SPEAKER_02 3:30

Yeah. I I wish I would have done that a little bit more, but oh, I wish I did that better too.

SPEAKER_00 3:34

Don't worry.

SPEAKER_02 3:35

Yeah, and when you're home, like you know, you're in your home, so you feel you can let it all out. Um, but yeah, like being in front of people, uh they don't always know what you're going through. So that's kind of my thoughts. What do you what are your thoughts, Trina? What do you think about the term?

SPEAKER_00 3:50

Yeah, the term. Like there's two kind of there's two kind of debates about the term disability. One debate is that it's it's a derogatory term and we shouldn't even use that term, even if we have a disability. Um, and that's like a totally other conversation that we're not having today. Um and like we have our opinions on that too. But today we're mostly talking about like, is having an ostomy a disability? Or, you know, lots of other issues, but in particular ostomy. And for me, I look at it like it depends on how it impacts your life. So one person who, let's say they had cancer or something, something that didn't affect their whole body, they didn't have an underlying condition for like the last 10 to 20 years or even three years or whatever. Um, and they but they suddenly found out they had colon cancer or something and now they have to get it removed. And then once they re recover and they they have a reversal, they're some of them, I'm assuming, might just go on with normal lives after that, it's possible. Right. But uh but some and some people I've seen in the in the group say, I don't consider myself to have a disability. I can do anything anyone else can do. Um, I don't feel that way. I don't feel like I can do anything anyone else can do. I don't have the energy that a healthy person has. Right. I don't have the um ability to work like a normal job because there are so many days when I can't work because of my health and my weakness and my immune system. Um, I also look at the situation of like when I go to use a bathroom in public. Yeah, I want to use the uh disabled persons, the handicap, or I think that word is out of favor now too, but that bathroom, because I want the privacy, number one. Um, and like to be able to move, it's hard to like do all that stuff in there when you're in this tiny little cubicle. But then you even run into problems in bathrooms where they don't have a surface for you to like put your supplies on, like my odor drops or you know, or the toilet paper breaks off every piece, you know?

unknown 5:43

Yeah.

SPEAKER_00 5:44

These are these are actually like serious barriers for us to have a normal life. And so in that way, I consider having an ostomy a disability. I have issues with dehydration. I have to go for IV hydration therapy every two weeks. And I sometimes get so dehydrated that I have to take like clear everything off my calendar just to care for myself and heal and get better and recover. Uh, and that's all because of the ostomy. I never had dehydration before the ostomy. Yeah. So not only has it helped me with my previous condition or my, you know, what led to having the ostomy, so it's made my life better that way, but it's also introduced other things that are going to create problems like the itchiness of the bag can be so crazy that you you can barely even think. And if you get a leak, or if even if you're just getting a little bit of leak around the stoma and you it's affecting your skin, that's these are all issues that a normal health. Food anxiety. Yeah, food anxiety, having to watch everything we eat, having to ask for uh substitutions and changes to every order in every restaurant. It's embarrassing, it's humiliating sometimes. And I always feel like I have to say, like, I'm sorry I'm asking for so many things just to do with a simple burger. Right. You know, like gluten-free, that not no sauce, no vegetables, like you know, it's just so crazy. And um, and like this to me, these are proof that we have a disability. But looking at me, especially when I'm feeling good and I have the energy to go out dancing, because I'll go out dancing and I will dance all night. And I'll be pushed, I have to really push myself. Like, you know, I probably shouldn't go that hard, but it's like I I can do it, so I do it. Yeah. And uh, and there was a time when I thought I might not ever be able to dance again. So for me, that's like I just take advantage of it. And when you see me on that dance floor, there's no way you think I'm disabled. Like no way. But then two days later, I could be crippled with arthritis, you know. So yeah, um, it's like this is what immune autoimmune conditions are like. And I think maybe someone who's had cancer or or a different condition that has led to their ostomy, maybe it's not as uh they don't maybe struggle as much after the surgery as some of us do, maybe.

SPEAKER_02 7:55

Right, yeah, yeah, because it's the underlying condition. And um, I I one of the things that I I hope people who are listening to this who don't have an ostomy or an underlying condition understand is like telling people, it's like telling people who are overweight you need your FAT, or I don't want to say it, I just don't want to say it. I hate saying that word, or telling people who are too thin that you're too skinny, right? But telling somebody like us, yeah, see, and then but telling somebody like us, you but you look okay, you look fine, you look great. It's like, but you have no idea what it is.

SPEAKER_00 8:31

It feels like they're diminishing what we're actually experiencing when they say that.

SPEAKER_02 8:34

It does, it does. And then um, and then assuming like like I know for me, like I'm not on disability, but I've applied for disability and been denied, and I'm in the appeal process again since my accident. But like people thinking that I just don't want to work, or or you have a business, so you should be fine. Well, no, it doesn't work that way, you guys.

SPEAKER_00 8:53

Not when you're first starting your business and building your business, like entrepreneurs have to put years in to start turning their profit.

SPEAKER_02 9:00

Years just to make profit and years just to get to where you want to be. So, no, it doesn't work that way. Yeah, you know, um, there's a saying that entrepreneur, and not to get it off on that tangent, but uh entrepreneurs, what one what a team of people or what most people won't do, are what entrepreneurs will do, right? Like, so so what most won't do to kind of like suffer through is what an entrepreneur will do so that they can get ahead in the end, right? That's kind of how it goes. But I do a lot of things I don't like. Like bookkeeping, my own books. I really don't like that. I'm a couple months behind. Don't remind me. Um, but yeah, just like thinking that we're being lazy or just gonna like drain the system or something like that. Like it is because because it's like we're not in a wheelchair, we're not missing a visible limb, although we are, we're missing something very, very important to our the way our body functions.

SPEAKER_00 9:51

Um, and thinking that like we're being dramatic or and then or just having to overexplain because it isn't overexplaining, or like even like uh when I went on a whole weekend date, I talked about this before, and got there and and realized that I didn't bring my odor drops. Yeah. And people would probably be like, Well, that's not a disability, it's not disabling you that you're gonna stink up the bathroom the whole weekend, but it's devastating, it's humiliating, it's embarrassing, especially the first time I'm going on a whole weekend date with someone. Yeah, yeah. So, and then we had to drive an hour to another city to be able to get some odor drops. And so it it all worked out. But the point is, is a healthy person doesn't have to go through those a non-disabled person doesn't have to go through those things. 100%.

SPEAKER_02 10:35

Like, like on that subject, like, you know, I'm having all these, um, I've been having this flair for over a month, and I'm gonna be needing all these tests. So a colonoscopy, another endoscopy, an MRI, like multiple days of blood work and all the tests, right? And like, unfortunately, the guy I'm seeing is probably gonna watch this, but I'm afraid to tell him this stuff because I don't want to feel like too much, and that is part of the disability. Yes.

SPEAKER_00 11:03

Oh my god, you make me want to cry when you say this because that is a huge part of it. A huge part of it is these episodes of sickness over and over and how demoralizing it feels and how it makes us feel unworthy of love and unworthy and like we're a burden, you know.

SPEAKER_02 11:18

A burden, and that's and that's just it. Like he's so understanding and he so gets it. And so he probably would be, but my fear is telling him or anybody else, especially at my age, where it's like, Well, gosh, is she gonna be able to like hang? Is she gonna be able to do anything? Are we just gonna be at the doctors all the time? I'm gonna have to deal with this. Like, is she gonna be sick and bedridden and I'm just gonna be like next to her?

SPEAKER_00 11:39

Like, am I committing to like taking care of a sick person when I'm healthy? Yes, yeah.

SPEAKER_02 11:45

So it's uh it's so like I if it just I've been doing so good for so many years. So for that to come up now of all times, like it just feels so invalidating, and people don't get it. People don't get it, you know. The doctors are getting it. I mean, these these people who decide disability don't get it.

SPEAKER_00 12:02

No, like I can't believe they turned you down.

SPEAKER_02 12:04

I have to apply twice. I had to apply twice. They turned me down the fourth time. I'm on my second time, and and then on top of it, I have this whole issue with my leg now from the car accident, you know, and my knee. Like, I just I can't even be on my anyways. I digress.

SPEAKER_00 12:17

What I suggest with that, um, just as a quick aside, is every single medical appointment, test, anything you get done right now, every time you go to the hospital, get your files and then include those in your reapplication.

SPEAKER_01 12:29

Yeah. That's what I did.

SPEAKER_00 12:30

Like, include all the medical visits you've done between the last application and this one. You can usually like phone or even pay to get them, you know, all your records. Okay, that's how I did it anyway.

SPEAKER_01 12:41

Yeah, no, that's good.

SPEAKER_00 12:42

But yeah, but like the whole disability thing. Like, one thing I have seen, and I'd love to get your opinion on this. There's a a woman on Instagram who has an ostomy, and she actually records herself on buses sitting in the uh disabled seat. And she has a lot of people like trash talk her about it because they're like, you don't need that seat just because you have an ostomy bag. And um, and other people are like, and she tries to defend herself, you know. Um, she also brings up like the the bathrooms and like how people have confronted her when she's used um the disabled people's bathrooms because they don't see anything wrong with her, you know?

SPEAKER_01 13:20

Yeah, yeah.

SPEAKER_00 13:21

Invisible disability. Um, but I have to admit, I had a very kind of repulsed reaction to her sitting in the disabled person's seat on the bus. Yeah. Because like even like there was a time when I had a lot of mobility issues, and I actually had one of those wheelchair, uh not wheelchair, but like disability um things you can put in your car so I could park park in the disability parking spots because it was really hard for me to walk. Uh and I had them had it for a couple of years, but when I started to get better and my mobility improved really quite a bit, I didn't reapply for it because I didn't feel like I deserved it anymore and I didn't need it as much as other people needed it. Yeah. And so then when I, you know, I would never, I I get up, I stand up and let people sit down, even if I'm sick, even if I'm feeling sick. Um, because to me, mobility is not my issue.

SPEAKER_03 14:07

Right. You know?

SPEAKER_00 14:09

But so that's how I felt when I saw that. But I didn't say anything because I don't I don't like to put out that kind of negative, judgy energy. But um that was my impression. Like, do you really need to sit there? So I'd love to hear what what your perspective is.

SPEAKER_02 14:21

Um, you know, I it kind of goes along with the the bathroom pass in a sense. Have you seen the bathroom pass? Like the UAA actually put it out and it's like this little piece of paper. And businesses don't have to agree to it, but you show a pat like this pass and say, Hey, I have an issue. Like, I need to use your bathroom. And and I tried the same thing, kind of like how she's doing, right? Like now, hers is different. Obviously, using the bathroom and sitting in the disabled seats, different. But I walked into a place, I was living in California at the time, and I walked into a place just to see what they would say, just to test the waters. I did it a couple times because I wanted to see what would happen because California is really weird about using their bathrooms, like it's just super strange to people. They don't like people using public bathrooms, probably because of homelessness and that. Yeah. Um, and sure enough, I was this guy was denied, but he started like yelling at me, and like I was like, but I have a pass and I really need to use your bathroom. And he was like, he was going crazy. You should have recorded that. I should have. And I laughed. But um, as far as like sitting in a disabled in like a handicapped seat, if there was something more to the story, like she was closer to a bathroom or closer to an exit because she has multiple leaks, or she um was closer to her bag that she hung on. Uh but I don't know, I don't know. Just like something. Like, or you know, she has an issue with moving because of the bag, or the bag's in a weird spot, or she has a leg that's also a little, you know, not functioning right. Like something like that, then I could see it. Just for having an osmi and everything feels okay and everything's as normal. I don't think she should be sitting in that seat. Yeah.

unknown 15:57

Yeah.

SPEAKER_00 15:58

So I do feel like, I mean, I don't know, and she could have a very valid reason that I'm just not aware of. Um, but I feel like that when people take advantage of situations like that, then it can create uh like anger or people wanting to look at all of us like we're all just faking it or we're all just um taking advantage of the system, you know? Yeah, yeah. Um, it's kind of like when a woman lies and says she's been assaulted and believe all women, you know. Right. But then but then the people that know that she's lying, they start to not believe all women because she made all women everyone's suspicious now, like made all claims seem suspicious now. Right, right. Um like that kind of thing. I just don't agree with people abusing the process, abusing the system, taking advantage of people's goodwill, you know.

SPEAKER_02 16:48

Yeah, but and I think that's where we're at because like like you said, people could then look at us and say, Well, we don't see it, so why would we think that you need disability or you need special parking or all these things, right? So it is one of those things that you kind of have to take people's word for it um because you can't see it.

SPEAKER_00 17:09

Yeah. I think the worst of my experience with invisible disability was before the bag. It was after my vaccine injury because because all my blood tests kept coming back normal. Um, the doctors were saying to me that it was psychosomatic. It was in my head, it was caused by something that happened to me as a child, and I just don't remember. And now I'm all of a sudden sick, and it's just because of something mentally fucked up in my head. Um, and I knew that wasn't that wasn't true, but I was still willing to try antidepressants and try to draw my childhood and all these other stupid things people, doctors and naturopaths told me to do um because they because my blood test came back normal. And every time I went to a specialist, my blood test came back normal.

SPEAKER_03 17:53

Yeah.

SPEAKER_00 17:54

Um because my invisible disability, they couldn't measure it with their normal blood test. They assumed that it didn't exist. And that's how what I've learned and what I've noticed with my health journey and with other people I know is that our bodies balance themselves out so well. Like that's what they're designed to do, so that your blood test, even when you feel horrible, can for a very long time come back normal. Wow. Until something goes very wrong, like with me, and you end up in the hospital getting an emergency surgery and having 75% of your large intestine removed. And all of a sudden, yeah. Now all of a sudden, people were gonna take me seriously. And after that, I started getting weird blood test results. But even in the two weeks that I had a whole perforated bowel and I was going back and forth to the hospital and they were doing blood tests and x-rays, they didn't figure it out that I had a perforated bowel because none of my test results showed it until I was almost dead, until I was like on the verge of dying. That's when my test results changed and when they started doing a more invasive test to find out what was wrong with me. But that's how they treat even doctors treat us. And uh, so that period of time, it was four years from vaccine injury to emergency surgery. So for four years, I was treated like it was all in my head, and to the to the extent that um my partner at the time thought I was faking my illness, and his family thought I was faking my illness. And they would they would shit talk me behind my back uh and in front of my children. And then my children would come to me and say, Mom, what does it mean to be off your rocker and shit like that? Because they were saying I was crazy. So they were all gaslighting me and treating me like I was faking my illness, and I was so sick that I would literally wear a baseball cap and like clothes and walk looking down, hoping no one at my daughter's school or my, you know, would talk to me because it was so hard for me to even stand up without feeling like I was gonna pass out. I was so dizzy, constantly dizzy, and so sick. And and yet I was faking it, you know?

SPEAKER_01 19:44

Like total gaslighting. Oh my gosh.

SPEAKER_00 19:46

Oh, it was just it was the most um like I've never in my life been treated so horribly until COVID happened, and then I tried to go in the store without a mask, and I got treated really bad in one of those situations. Um, but but yeah, but like that was the public humiliation, whereas this was more like personal, like private humiliation. Um, the people that were supposed to love me and take care of me.

unknown 20:07

Yeah.

SPEAKER_00 20:08

And uh that was just so devastating to feel like no one believed me and be that sick, you know?

SPEAKER_02 20:14

I feel like that happens a lot in family. Not not to that level, but I feel like at some level you are because it's that invisible disability, it's really like what are you doing? Like, why are you making this up? Why are you making it a bigger deal?

SPEAKER_00 20:31

Why you were fine yesterday, so why are you sick today?

SPEAKER_02 20:34

Yeah, everybody has diarrhea, like you probably ate something, or it's something you took, or you know, or when you're somebody who lived has lived a little more on the edge, like right? Like you danced and you just and like even for me, like just some of the things that I've done, like you know, in my own lifestyle has probably made it seem like, well, it's probably some way that she's living, or you know, choices, and it's like, mmm, you don't know, and it's just like like food choice. Like I remember I used to get shamed a lot for like what I ate. And it's like, but what people didn't understand is that the minute I tried to eat what a hell like a healthy meal, then I would be constipated for two weeks and couldn't go to the bathroom. So my best bet was eating that greasy ass, nasty Chinese food. Well, actually it tasted really good. I shouldn't say nasty, okay? It's so good, it's so damn good. Uh, but nasty for you, right? The grease and the I didn't know that. Oh yeah. Um, what uh the place we were eating it from. But, anyways, um, you know, but that was I could use the bathroom eating that white rice and the greasy chicken and the you know, whatever, the sauces, because they help actually kind of stimulate there's so much sugar in it, it does stimulate your bowels to move. And so I I just get shame, I would get shamed a lot for just what I ate.

SPEAKER_00 21:47

Um the other way, I've gotten shamed the other way. For what? Sorry, for like eat eating healthy, like really like people saying, Oh, are you one of those gluten heads? Oh, yeah, because I don't eat gluten. I'm like, I will literally. Be ill if I eat it. But apparently I'm I'm just uh doing a fad. Like my my symptoms improved 80% going gluten-free.

SPEAKER_01 22:09

Yeah, yeah.

SPEAKER_00 22:10

But it's just a fad. It's just a fad.

SPEAKER_01 22:12

Yeah. Yeah.

SPEAKER_00 22:13

Actually, the last guy I went on a date with made fun of me because I was gluten-free.

SPEAKER_02 22:16

Okay, so that's so immature.

SPEAKER_00 22:18

Yeah.

SPEAKER_02 22:19

So immature. Like, hello? How are you like and uneducated, right? Like, how uneducated are you to know that like people have these issues? And especially with digestion, like, oh, it just drives me nuts because like people have no idea how hard it is to go through life and like either not be able to eat or you eat and everything comes out of you. And um, it's just it's frustrating. Like, we want to be normal, we want to sit in a restaurant, enjoy a nice meal with people, but like that's not always reality for us. We have to pick and choose sometimes, you know? Yeah.

SPEAKER_00 22:52

And on the on the topic of um like people saying, but you look good today, or you're not feeling well. Well, you look great. And they really are saying it because they they want to be nice. They're they're trying to yeah, they're trying to say something nice. It's never intentionally to make us feel the way it makes us feel. You know what I mean? So it's it's kind of on us in a way, but well, it is, it's on us because we're the ones who are reacting to what they're saying. And at least like knowing that, like knowing that they're just I know they're just trying to say the right thing and they don't know what to say, and I can let that go, but it doesn't change how it makes me feel, as like, yeah. So what you're saying is I don't look sick, so therefore I'm not sick, you know? Yeah. And and also it makes if you've gone through like what I went through with the whole gaslighting and thinking it was all in my head and faking my my illness, then it also is more sensitive in that way too, because then I'm like, do they think I'm faking it?

SPEAKER_02 23:42

And then it's so common now to go through um any kind of medical anything and think that they think we're faking it, you know, because I've been told that it was the psychosomatic as well in the past, um, which I can understand to a point because I do understand how pain and your body react to each other. So, like the more happy and functioning, you know, happy you are, the least amount of pain you have because the the dopamine in that and I've recently experienced that anymore. But yeah, your pain receptors. And so I don't know. What do you think? What do you think is helpful for people? Like how what kind of support would help? So not obviously not saying this to people, but what would help?

SPEAKER_00 24:23

That's such a good question. It's so funny that you you said that because I remember uh just the other day talking to a friend and he's like, he had read something that said, when someone is sick, they are they are the center of the circle. And you're you have to like ask them how they're feeling first and and meet their needs first before you talk about yourself and before you, you know. And I was like, I don't know. I think like when I was sick, that would make me feel like I wish people would stop asking me how I'm feeling. I don't want to have to say over and over, either lie and say I'm fine or say I feel like shit. You know what I mean? Like I didn't want to be asked how I'm doing, and I didn't want to be the center of attention. I actually wanted the pressure off of me to not be the center of attention. I think like really just to believe people when they say they're not well, um, not get upset when they cancel plans, when they can't do something at the last minute, or if if something changes.

SPEAKER_03 25:11

Yeah.

SPEAKER_00 25:11

You know, those those are the kinds of things that like I I got to the point where I just start I stopped caring if people got mad that I couldn't do something. Yeah. I just knew I couldn't do it, so I just fucking like I can't do it. You can get mad if you and so the people who would get mad about that stuff, they just started dropping them out of my life because uh I am never gonna be able to commit 100% with a a chronic condition to to be at your event. Yeah, you know, I will try. I want to be there. You know?

SPEAKER_02 25:38

Yeah, yeah, yeah. That's just to say we want to be. It doesn't mean you can always be.

SPEAKER_00 25:42

And sometimes it's not because I'm extremely ill that I can't go, but I can feel myself getting weaker or more tired or run down. And I know if I go, you're like, it's gonna fuck me up.

SPEAKER_02 25:54

Yeah, yeah, yeah. No, one way. Yeah, I I think I think just being in those supportive relationships, that's that's all that's the best thing. And and you know what? And when as we get older, like we have less and less of those people in our lives, anyways. And and and too, and on the spiritual journey, like that is what happens. People fall off, people fall off out of your life because it's just not aligned anymore. Um, that's okay. That is totally okay.

SPEAKER_00 26:21

Yeah, especially if they can't handle like if if a person won't support you taking care of your own health, then they're gonna be a liability to your health.

SPEAKER_02 26:31

Oh, yeah, it is, it is, and that's just it. Like, it's one thing to feel good and get through life, but to be thriving is a whole nother issue. And um, and when you're living just in that balance of I'm okay, I'm okay, I'm okay, that's all right. But but yeah, sometimes all it takes is just this one event. Like when I was caregiving for my friend, I was great. I was doing just fine uh for months and months and months. And when the stress got real, and when the hallucination he started having more hallucinations and um he was having some psychosis things going on. I mean, I was in so much just disbelief. I don't want to say disbelief. It was scary. It was scary, it was um, it was stressful on my body. I mean, I've been in a flare since. Was it that? I don't know, maybe because I wasn't I wasn't able to take care of myself like I would normally take care of myself in that situation. And these are all the again, all things that people just don't see is that sometimes just getting by is great and and maintaining this this this even playing field is where we is good. It's baseline is good sometimes, but all it takes is one episode. Are you going out with your friends that one night or that one day to some that could totally set us off for a month or two?

SPEAKER_00 27:46

Yep. I know it's messed up.

SPEAKER_02 27:48

We don't want to be there.

SPEAKER_00 27:49

No, not at all.

SPEAKER_01 27:51

No, yeah.

SPEAKER_00 27:52

The invisible disability thing is just so like I remember standing in lineups because I had that thing where it was so hard for me to stand, and like what in five minutes, after five minutes of standing, I would start getting dizzy. I was like this for like this until I went off the gluten. That was one of my symptoms that improved dramatically. Um, but standing in lineups in grocery stores, I would literally feel like I was swaying and I would be, I would wish that there was a lineup that had chairs, chairs all the way down. And I've always thought like there's so many, so many more things that can be done for people with invisible disabilities that aren't being done, you know? Oh yeah. 100%. Or like, and it's even kind of embarrassing, like taking advantage of like the bank where they have like the the chair. Um, you have everyone stands in line, but if you're disabled or a business owner, you can go to that lineup. Or you have some like special account. Yeah, yeah, right. So and I would be embarrassed to go to that lineup because I don't look sick, you know? And it's just uh it's very it's humiliating. Yeah.

SPEAKER_02 28:45

Well, what other things do you wish that healthy people or people without this, you know, the issues we have, um, understood? What do you what do you wish they understood?

SPEAKER_00 28:55

I wish they understood that blood test results don't tell you how someone feels on the inside.

SPEAKER_01 28:59

Yeah.

SPEAKER_00 29:00

Um, that's a huge one, especially doctors. Like just because your blood test results are normal doesn't mean that it's all in my head.

unknown 29:07

Yeah.

SPEAKER_00 29:07

Um, and also that when like believe us. Believe us when we say we we can be laughing and having fun and still be so sick and in so much pain. And it feels like they people expect us to, if we're sick and in pain, to always be miserable.

SPEAKER_03 29:23

Yeah.

SPEAKER_00 29:23

Some people expect us to always be miserable, and if we're happy for a minute, that's proof that we're faking our sickness. Yeah. You know? Yeah. Um, or vice versa. They expect us to always be positive when sometimes you're suffering so much and you're just so scared that all you can do is cry. And I'm sorry, you know, like I just can't stop crying. Like, you know, oh, I feel like crying just talking about it. But you know, those moments when you you're just so heartbroken that you're going through it again. You know, it's like it's a fucking roller coaster. It is. It really is. You start to feel and I remember for years, years, every time I started to feel well again, I'd be like, I'm getting better, I'm gonna recover. And then I would get sick again. And so now I don't just assume I'm gonna recover anymore. Now I just assume that I'm gonna live my life as as for the moment as I can every day because I don't know when I'm gonna be sick again or when I'm not gonna be alive again. Like that's my mortality has become very, you know, my my bedfellow. Like, I'm not scared of my mortality anymore. And I'm I don't have like this idea that it's never gonna happen to me.

SPEAKER_02 30:27

You know, no, and that's and that's so true. And I was saying this last night that I'm going to always say from now on, like especially since my car accident, um, I am going to keep saying exactly how I feel. I'm going to keep being exactly who I am. Now there's a few things I have to learn to, you know, because sometimes it's too much. Me too. Um for the most part, right? But for the most part, I am.

SPEAKER_00 30:52

But you're a lot better than you used to be.

SPEAKER_02 30:53

Oh, way better. Way better. Because I've had two near-death experiences. And if I am going to, and because we still get sick and we have a disease, right? So there's these things that still are like lurking back here, and I'm 45. I'm gonna keep saying what I want to say or doing the way that's me and projecting the way I'm gonna project because I don't know how much longer I have. And I mean, I know I I know I'm fine, I'm gonna be fine.

SPEAKER_00 31:23

But I'm saying you don't know, like but we could step out on the road and get hit by a bus. Like it might not even be our disease, or not hit by a bus.

SPEAKER_02 31:29

Yes. Like, there you go, you know? You know, so yeah, it can happen. And um and yeah, we just have to keep doing what we're doing, but you know, we just have to have, yeah, we have to have supportive people, I think really is what it comes down to in our corner. And and part of it is us, like, you know, but we we but we can't help it. It's like having PTSD around it. It's the shame, the guilt, the fear, all those like lower energy. And when that when then when it does come back around again, it's like, like you said, again, it's a roller coaster of ride, a ride. And and it just when one thing's going right, then we get bombarded with something like this. Like everything in our life can be going right, and then all of a sudden, boom, here comes a crown splare. Boom, here comes the blockage. Yeah, you know. Um, yeah, it's just it's it is, it's it is, it's tiring.

SPEAKER_00 32:14

It is the trauma, like you said, like when you when you've been through medical trauma. Like for me, like I went recently and I'm dropping a podcast on this about how I was so bullied by so many doctors and so dismissed and treated like shit by so many doctors for so many years. And then the last few years, I didn't have that experience very much. And I started to feel like I was finally healing from that and I didn't hate doctors anymore and distrust every single one of them anymore. And and uh I was starting to feel like, no, you know, they're they're good people. They're just some of them were, you know, made mistakes, you know, trying to get into that mind frame. And then I had to face another doctor who was bullying me and like immediately triggers those feelings, those like those feelings of like, you know, oh that like so much so that I had to do a big rant on it on my podcast.

SPEAKER_02 33:00

I don't blame you. I've been treated like I was a drug seeker so many times because um because I ended up in the I've I talked about this in the past that I've actually put myself into the mental ward, I guess you call it, um, where for suicidal ideation a few times. And um, oh yeah, I mean, I still to this day know that I'm being treated as if I have that psychosis still, or as if I still have um like a drug-seeking behavior when I've never even presented that, you know? Um so yeah, it's just it is. It's really tiring to have to prove to your family and your friends. And so how is this not a disability?

SPEAKER_00 33:38

Mental health, mental illness is another invisible disability. Unless you're like acting out really obvious ways, it's usually very invisible to most people. And that's that's another part of our our journey. Because how can you be fully mentally well after what we've been through? Like that's part of our healing journey that you and I have been on with our self-work and and why we became coaches, because we want to help other people get to that point of where we are, but we are still working through it because it isn't it's like become a part of like our our trauma, our history.

SPEAKER_02 34:12

Working through it and still gonna experience the ups and downs of them of the mental health part too.

SPEAKER_00 34:19

Because it's not like we went through something and then we had all this time to try and deal with it. We went through something, we started to try and deal with it, then we went through it again and we went through it again and we went through it again and again and again, and here we are over and over dealing with these bully doctors or dealing with being dismissed or having our um disease or our illness treated like it's nothing or like that we're faking it and being gaslit and all of that. Like that's yeah, I think that I think we've proven in this episode that it is a disability.

SPEAKER_02 34:45

I think so too. And and and while while we say that, like I do also think that if you don't consider it a disability, that's okay too. And and and um don't dismiss people who say that it's their disability because that's also bullying. And that's also, you know, they're not no one's saying that you are, but we take our condition, the whole totality of circumstances, which is not just the ostomy, not just the underlying condition, but also the pelvic floor, the mental health, the medication, um problems from medications, the the dehydration, dehydration, the problems that we've gotten, the kickback from society and using handicapped bathrooms, the kickback we've gotten from families, doctors, and all of it, right? So it's a lot to deal with. So yes. Yes, I think we have proved that it is. And and um if you don't want it to be a disability, and you can still you can still live your life. And we are, I mean, we're still living our lives. It's just it's gonna look different. It's always gonna look different.

SPEAKER_00 35:41

It's like it's living life in spurts. That's why you have to take advantage of every healthy or like somewhat healthy moment that you have to enjoy life and be grateful for those moments and love the ones you're with. Yes, so important.

SPEAKER_01 35:57

I'm glad you said that. Because sometimes I forget that too, you know.

SPEAKER_00 36:01

To take to live for today, you mean?

SPEAKER_02 36:03

Yeah, no, sometimes I just I have to remind myself, like, oh wow, I am thankful today for my that I feel good, you know. Like, even though I'm in a Crohn's flare, like I'm still gonna take off and do my in-person support group today and um go to the store and do the things that I need to do because I'm okay. Like, you know, I may have to go to the bathroom five times, but I'll be all right and I'll still make it throughout.

SPEAKER_00 36:25

You get used to it, you get used to pain, you get used to struggling, and and you become resilient to it. And that's one of the things um, that's one of the gifts that we get from our illness and our journey, our medical journey is we become very strong. Really strong and very strong, very resilient. Um, and we handle pain, we can handle pain better than most people. We can do activities that most people wouldn't be able to do when if they were suffering the same situations that we're suffering, the pain or the or the issues. Uh most people would be like, I can't leave the house. And I uh it happens all the time with my like normally healthy friends where like they get sick or they have an issue and and everything in their life stops. And that's like an issue that for me is still I have to that's I can still keep going with that issue.

SPEAKER_02 37:09

You know, yes, I know. Um again, the guy that I'm seeing, we were on a motorcycle ride and it was super windy, and um, I guess what you would consider uncomfortable, but I he was like, I'm sorry that it was like you, he's like, You're a trooper, like you ride well, and like that was really good. Like, and you didn't complain. And I'm like, what's your complain about? Like, how can I complain? I've been in so many uncomfortable situations in my life. Like, to me, I'm on a motorcycle riding through the wilderness, like this is all freaking awesome. Like, hello. Like, awesome.

SPEAKER_00 37:39

I'm a little more picky on a motorcycle, probably because I've ridden my own. But I'm like, if this seat's not comfortable, I'll last two minutes and get me the hell off this bag. But that's also coming from a person who's had a lot of ass pain over the years because of my issues. Yeah, you know?

SPEAKER_01 37:55

Yeah, yeah, 100%. 100%.

SPEAKER_02 37:57

But anyways, I think we have like you're right, we proved it. We proved it.

SPEAKER_00 38:02

We've proved it now. That's the answer. That's it. If you disagree with us, please let us know in the comments. Or if you agree with us, or give us your story. What have you been through? Uh, do you think that having an Austin is a disability, or do you feel like it has it does nothing to hold you back? I'd love I love hearing those stories because they inspire me. They inspire me to go out and do things I'm scared to do.

SPEAKER_01 38:23

That's all that's always a good thing. Yeah. Perfect.

SPEAKER_02 38:26

Well, thank you all for watching. Rewired and Desired. Next week, you'll find out what our topic is. Yeah. We'll let you know.

SPEAKER_00 38:33

Yeah, we'll we'll just pull it out of the hat like we always do, usually. Yes, yeah. You know, we could talk about pain medication.

SPEAKER_01 38:40

We could.

SPEAKER_00 38:42

We've had both had lots of experiences with um pain medication and then how it was managed by our health professionals and or not managed.

SPEAKER_01 38:49

Yeah, not managed. Yeah. Okay, I like that one. Perfect.

SPEAKER_00 38:52

All right, that's what we're gonna talk about next week. Pain managed or pain killers. Oh, yeah.

SPEAKER_02 38:57

Maybe just pain management in general, because I've had so many if pain management for me has looked like all different things.

SPEAKER_00 39:02

Yeah, that's true, because then you can offer like some of the ways that you manage pain. I remember you telling some of that. That's very interesting. Perfect. Awesome. Love you, Nicole. Love you, everybody.

SPEAKER_01 39:13

Bye bye.

SPEAKER_00 39:14

Bye bye.