Short Bowel Syndrome, feeding tubes, and ostomy bags with Shaylee Raye Hunter 

Speaker Key:

VO      Voice Over   

CB       Chantal Boyle

SH       Shaylee Raye Hunter 

LS        Lynn Smith

00:00:00

VO      

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

CB       

Welcome to The Sunflower Conversations. My name is Chantal and I'm your host today. And joining me is my colleague, Lynn Smith, who is the programme director in the US. And we are both delighted to be joined by Shaylee Raye Hunter. Who lives in Utah, in America. Welcome, Shaylee. How are you doing?

SH       

I'm good. Thanks so much for having me. I truly appreciate being here this morning.

LS        

Shaylee lives with several invisible health conditions. Such as chronic intestinal pseudo-obstruction, CIPO, gastroparesis and short bowel syndrome.

00:01:07

CB       

We're going to learn all about what they are, how it's affected Shaylee and how you manage your everyday activities and the barriers that you face. But first of all, I think for anybody who's listening on a podcast, we need to do a little bit of an audio description. I am a brown skin female with brown, very curly hair and I'm wearing glasses.

Lynn, would you like to do an audio description of yourself?

LS        

Sure. I am a white female with brown hair and bangs.

CB       

And for anybody who's listening in the UK, bangs is a fringe.

LS        

I didn't know that.

CB       

And then, Shaylee, please. I think the description of you is probably what is more exciting than our descriptions of ourself.

SH       

Of course. I'm kind of that in between, ashy blonde hair with bright blue eyes, pale skin. And I am wearing a crown.

CB       

And it is one heck of a crown. It is big and it is blingy. It looks like it's got a pink jewel in it. Has it got a pink jewel?

00:02:23

SH       

They're like iridescent-y. They pick up colours, which I love. Whatever I'm wearing, it will just kind of pick up that colour.

CB       

It's lovely. Really lovely. Let's talk about why you're wearing it. You are Mrs Petite Utah, right?

SH       

Yes, that's correct.

CB       

Can you just tell us a little bit about that. I know that beauty pageants in America are very popular. Can you just explain a little bit about that? And I don't think I've ever seen one where it’s petite before. It’s normally without the word petite. I'm interested to hear a little bit about that competition.

SH       

Petite USA is just a pageant system for girls under five, six. It eliminates the height difference and provides us with an opportunity to compete, unlike other pageant systems that may have height requirements. 

And I love that I get to stand next to beautiful woman, who around my same height. And I don't feel intimidated by somebody else who is a couple of feet taller than me, standing next to me in heels, also. And I'm super excited to go compete at Nationals in July to hopefully win the Petite USA title.

CB

And are you using your platform now as having won this title to drive forward your passion, which is advocating for women's rights and disability visibility?

00:03:53

SH       

Yes. Most pageant systems require you to have a social impact or something that you're working on during your title to better a community. And mine is definitely influenced by my life and just invisible disabilities. And advocating for people to embrace their medical devices and their invisible disabilities. And just really go after what they want in life and not be defined by their illness.

CB       

Can we move on to what your illnesses are? You just mentioned medical devices, we would like to hear about that as we have our chat today. But can you go through and we want to understand a bit more about the three disabilities that we… Lynn, so eloquently described at the beginning of the call… Not the call but the podcast.

SH       

Yes. I was first hospitalised at six months old. And they discovered that I did have chronic intestinal pseudo-obstruction, likely known as CIPO. This is where the intestinal muscles don't fully relax and move things through the digestive system. Throughout my life, I just had a hard time getting all the nutrients that I needed. Which led me to having my first feeding tube at two years old. 

And then I've just constantly been in and out of the hospital, trying to get my intestines to work, getting bowel rests [?], taking different medications to get it moving. There's no cure for CIPO. And it was really just, what's the best way to manage the symptoms? 

Which eventually led to me having gastroparesis from my intestines not working. It slowly moved into my stomach. And that was fun. Gastroparesis is just your stomach just can't empty regularly. It empties slowly. And a lot of people have a hard time still obtaining those nutrients, sometimes being nauseous, not being able to eat a lot, things like that. 

00:06:00

And then when I was 16, I actually had my ostomy surgery. I'm a huge advocate for ending stigmas around ostomy bags and bringing awareness to that as well. And after my ostomy bag, I still had issues with my CIPO and just navigating my intestines that weren't working. They were really stretched out from not being able to move and whatnot.

It was about seven years ago that they did a total colectomy and removed most of my intestine, besides 20cm. Which left me with short bowel syndrome. Since then, I haven't really been in and out of the hospital as much. Which has been super beneficial. But I am dependent on a feeding tube on TPN, ten hours a day. 

And we all know the risk factors of TPN ruining your liver, potentially losing access for your veins and stuff with that. They have talked about an intestinal transplant through Nebraska Medical. And we are looking into that as things may decrease in my health.

00:07:12

CB       

That's an awful lot. And from such a tiny age as well, that you've been living and combating the symptoms. You said, everybody knows what a TPN is, but I don't think everybody does. Can you take us back to basics and just describe exactly what that means?

SH       

TPN is called total parenteral nutrition. It's just a feeding tube that goes in your arm or in your chest, that goes into your heart. And then you do IV medication that gives you all your nutrients. Once a day, most people are on it. Sometimes for 24 hours a day, 12 hours. I'm on it for ten. Just depends on how your body can process it.

It gives me all my nutrition, fluids, everything like that. That is literally my life source right there.

CB       

And the whole process of you eating, that for many people it’s just a normal, everyday activity that you don't even think about. When you just pick something up, put it in your mouth, you chew it and it works its way through its body. For you, what would that have been like? What would you have had to consider before you started to enjoy a meal with your friends or your family?

SH       

Food was always a hard thing growing up. Especially in school. Everybody's sitting at the lunch table and you either bring your lunch from home or you grab lunch. And then they make you choose all the food groups. And you get milk. And I didn't do really well with dairy or vegetables, things like that. I didn't do well with breads. 

There wasn't a lot of foods that really were beneficial for me to eat. Other than really a clear or soft liquid diet. That was probably the most beneficial for my intestines. But there's the part of you that also is hungry constantly because you're not getting the nutrition that you need, the proper nutrition.

00:09:30

You're like, I'm starving. But also, if I eat this, I know I'm going to be sick or throwing up later. Or in pain. And it was picking my battles, for sure. Especially as a child, do I want to eat that? Do I want to have the consequences later? Or am I good? There were a lot of times that I chose to just fit in with the crowd and partake of whatever was happening. Whether it was at a birthday party or a family function. But I definitely, sometimes paid for it later. But you got to live life and sometimes consequences happen.

CB       

And what was that peer pressure like from your friends and people at school? Were you really conscious of their opinion or were you not?

SH       

I think the biggest thing is, with me being so little and petite, a lot of people judged me for not eating. That I was bulimic or anorexic or… Those were the things that people said to me. And I was like, wait, that's not true. I just have intestinal problems. 

Because if I was throwing up in the bathroom at school or whatever it might be, obviously, I'm not contagious. But people talk, especially when you get to junior high and high school. Those are fun years. All the rumours and drama. But I just didn't listen to them because I felt like I was more mature in what I was dealing with at that time. And nobody was truly going to understand. 

00:11:09

And obviously, if they didn't care enough to understand. And they had to make up their own scenario of things, they weren't going to listen to me anyways in the first place to explain myself. But at home, my mother was always super amazing. I was never required to eat anything. If I wanted to eat, that was great. But we always had family dinner every night at a certain time. Or Sunday dinners were big. 

And it was hard, sitting there with my family or whatnot. But most of the time, I’d just sit on the couch and watch TV and listen to them all upstairs, in the kitchen. There was a wall [overtalking] there. I could still see everybody, hear everybody. It wasn't like I was just discluded from the family but just not being able to look at it or stare at it. And just sit at a table, not eating. Sometimes it could be a little bit hard. 

But my family has always been understanding. They grew up with the abnormal lifestyle that I brought to our family. It wasn't ever different for us, I guess.

CB       

To your family, it's normal. But it's outside of the family home, isn't it?

SH       

Yes, definitely. I feel like the worst was dating. Trying to explain to a guy, hey, let's not do a dinner date or a lunch date. Can we go do an activity? How about bowling? Or something like that. Or in Utah, we love our soda shops. We have a lot of soda shops that they just put in different flavoured syrups into soda and creams and stuff. And that's always a fun little date that I'm down for any time. 

But trying to explain that to a guy is very hard, especially before you go on your first date. Because then they're like, why can't you eat? Do I actually want to go on this date now? That’s different.

00:13:09

CB       

The judgement. And people filling in the gaps because they don't know the full story. And coming up with their own story must be very challenging for a young person, especially. That's why doing Miss Petite Utah and actually really putting yourself in front of everybody is such a big step, really, I would say. Is a big move.

SH       

Yes. Especially on a national level. I've competed in different pageant systems locally in Utah. Utah's a big pageant state. And I'm excited to take this nationally and see what can come of it.

CB       

You are listening to The Sunflower Conversations. Remember to hit subscribe.

LS        

It seems like you did find a wonderful man. And you're Mrs. How long have you been married?

SH       

Almost two years. I actually met my husband while doing pageants. And in the pageant system, I put myself out there. I'm like, this is who I am. I show my feeding tubes in my evening gown. I show my ostomy, for fitness or swimwear or whatever it is. He knew, he very much well knew. 

Like, this girl obviously is not healthy or normal. But he was still so willing to take that on in our marriage. And it's been difficult navigating. But I'm super glad that he was willing to give me the chance, despite all the extra baggage I have with me.

00:14:47

CB       

That must be so refreshing for you, though. To actually go into a relationship where that person knows the intimate things. Because what we're talking about is invisible disabilities. And no one would know by looking at you, all of your health challenges that you have faced and continue to face. You just wouldn't know. That that must have been a breath of fresh air for you.

SH       

As a little girl, I always dreamed of having a family. And going to school and doing all the normal things everybody in life does, that I was told that I wouldn't be able to do. Or live long enough to get to. And it was honestly, a dream come true that I found a man who was super willing to love me for who I was. Especially with all my horrible dating experiences before then.

CB       

Your life expectancy then, was told that it would be limited?

SH       

Yes. They did say, due to me not being able to absorb nutrients. And with how diseased my intestines were, they were really worried that I wouldn't make it past then. Past 20. Now, I'm 26. My parents are super happy.

CB       

[Overtalking].

SH       

I’m happy. But I feel like there's just those conversations in the hospital about feeding tubes with getting infections or losing access. And then not having that lifeline for yourself. That can be really scary. And talking about that and navigating that was really hard. I've had a lot of different infections over the years, staph, MRSA. 

00:16:34

I've had a lot of feeding tubes replaced because they're just not meant for long-term, life long-term use.

CB       

Can you talk us through it, if you don't mind? Only go as far as you’re happy to and comfortable with. But can you talk us through it? Are you connected to it 24 hours a day and you're just being delivered the nutrients for the ten hours a day? Or how does it work? And can you feel it going in? And you said about infections. There’s so much I want to know.

SH       

No, you're good. It's just a little tiny tube. I have mine in my chest. And it goes into my heart. And I just am connected for ten hours a day. I'm actually connected right now. I get this for ten hours a day. And then I can de-access it. But it's not a port. It's like a permanent IV that's constantly there. 

I have to change the bandages weekly to help with not getting infections and things like that. I also can't get it wet at all. That's been fun. I don't know how to swim. 

CB       

[Unclear]. 

SH       

It's something that I have to take care of. And it's a big part of my life.

00:17:53

CB       

Your lifeline, isn't it?

SH       

Yes, it really is. But I've always had one, so I don't know really any different. Because I got my first one at two years old. I've always had them. They break really easy. I think the longest one I've had was for five years. But I've also had five different ones placed in one year. They're just not meant for long-term. Which is really sad that we haven't come further in this development.

CB       

Can you be mobile then? Or do you have to stay at home for those ten hours? Or are you able to take the feeding solution with you and navigate your day? What does a day look like for you?

SH       

I just have it on a pump. And then I put it in a bag and then I can utilise my bag and carry it around with me wherever I go. It really doesn't hinder me from going about my day. I usually do it while I'm sleeping, so that I can take it off in the morning and then just go to work and school. And not have to worry about taking it off in the middle of the day. 

Or trying to leave it. Because I've left it at work before and then I've had to go back to work and grab it for the next night. I try to leave it at home so I'm not losing it places.

CB       

You are listening to The Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes. 

In terms of school and work, I'm picking up that there were some challenges with your peer group and your symptoms and how they manifested in people coming to conclusions and making up their own story. Were you able to complete your schooling? And how was that?

00:19:55

SH       

I did actually get to graduate with my high school class. My mom was very adamant that I was going to attend school in person. She didn't want me to do online school. She was like, we're not letting your illness win or define what you can and can't do. She was like, you're going to school. 

And she was like, you're very social. You need this. You need these skill sets. And it was really hard. School was really hard. I didn't have a lot of friends due to being sick and gone all the time. I had some professors that really struggled with helping me with my health. And then I had others that were really great. 

I did have one friend throughout school, though. One friend is all that matters. But I don't know. I feel like, I can look back and just say, I was able to go through all of that and still graduate. And not let anything affect me leaving or switching to an online school. I got my ostomy bag while I was a junior in high school. That was really hard to go back to school my senior year and be like, navigating the first year. They always say the first year is the hardest because you're trying to find the right system.

CB       

The ostomy bag is for your bowel, isn't it?

00:21:19

SH       

Yes, that's correct.

CB       

And presumably it takes some time to get used to applying it and keeping it maintained?

SH       

Yes. Luckily, I had a 504 at my high school. And the office was really sweet. They let me use the staff bathrooms my senior year, so that I didn't have to go into the stalls with the other students. And have them questioning me or noticing anything. That was honestly so refreshing that I didn't have to worry about that. 

Because then navigating college with an ostomy bag and going in the stalls, I've been asked if I'm throwing up in the bathroom when emptying my bag. And I'm like, no, but thanks for asking.

CB       

And how old were you then? I'm sorry, I don't quite know the structure of the year groups in the US. How old were you when you got that?

SH       

16.

CB       

16. That's a real age, isn't it?

LS        

That's a rough time for anyone. That was nice, that you had some support there from the school. And your parents sound wonderful. Your mom and how she just had you keep going. That's wonderful.

SH       

Looking back now, I can really appreciate what my mom was doing for me. But in the moment, I was like, oh my gosh, I hate you so much. I was like, why are you trying to ruin my life? I was like, no, I don't want to go back to school. I don't want to do this. She made me go to school every day if I was not in the hospital. 

CB       

Right, okay. 

00:23:05

SH       

Because my illness was not contagious. That's what she said. She was like, you're not contagious. Sorry, you're sick. Sorry, you didn't sleep last night. Sorry, you were up sick. I'm sorry but you're still going to school. I'm glad she pushed that and made that very adamant in my life. Because now I can get through anything while still being sick. 

I know my limitations still but ultimately, if I'm having a rough day or whatever and I need something to get done, I can do it.

CB       

And now, you mentioned you are in employment. And what was that like, applying for a job, telling them… Did you tell them about your invisible disabilities or did you wait until you got the role? How did that work?

SH       

I did different things. At first, I didn't really tell people. And then if I got sick, then they found out. And eventually they just kept not scheduling me. And then I wouldn't have a job. But they didn't fire me because they couldn't do that because of discrimination. I just slowly got less and less hours. Which is fine. 

00:24:22

And then I did sometimes tell people straight up, this is what I have. If you're willing to work with me. And that didn't always work, either. And jobs were definitely hard. I've lost a lot of jobs due to being sick or not being able to fulfil a role completely. 

There have been jobs that I've had to leave because they aren't good for my health either. Due to the hours or the company not willing to let me work from home on the days that I'm sick. Or just different things that come up. And if they're not willing to work and they don't care, then why should I work for somebody who won't put my health first? 

Because ultimately, my health has to come first in my life. If it doesn't come first, I don't have a life. It's crazy to me that some people don't understand that. Especially in the employment world. But I have an amazing job that I love. And my company really works with my schedule, my flexibility, with doctor appointments and if I'm sick. I really feel like I found a gem of a job and an amazing supervisor who just understands.

CB       

What they say, and it's true, is that if you can support your employees and make the workplace adjustments that they require, then the retention is going to… Is obviously going to improve. Because you will value that employer so much more. Because you know that your needs are going to be met. 

It makes sense for all employers to be much more open and willing to discuss different adjustments of how they can make sure that the employee can bring their whole self to work. Whether or not it means, on the days where you haven't slept all night, of course, it's fine. Work from home. Get up later, start when you can, finish later. And having that flexibility. 

And I think you touched on doctor's appointments as well, which are crucial, aren't they, to maintain a standard of health and being alive.

00:26:42

SH       

Yes. And it's difficult because doctor’s offices are only open nine to five-ish. And Monday through Friday. And that's when a typical job is. And then if you are like me, who has a million different specialists in every category. And I'm following up with each one. That's a lot of doctor appointments to do. 

Or with my TPN, I have to get lab work weekly. I'm constantly going into lab. Or I get physical therapy as well. I'm like, you put that on weekly or bi-weekly. And then you got therapy for just mental health. And you do that bi-weekly or weekly. And I'm like, they just add up. And I'm like, I don't understand why some employers don't understand that I need to do this.

It's not like I want to do this. Obviously, if I didn't have to, I wouldn't. But if I don't and I'm not updating my doctors or doing these appointments, how are they going to help me when things get bad?

00:27:49

CB       

What reaction do you get from other adults, members of the public, when they realise that you have invisible disabilities?

SH       

Some people always are like, you poor thing. Or, wow, you're so young, you've been through a lot. Or I get some people that just look at me, shocked. Or in disbelief, almost. And then I always get those people that are sceptical, they don't believe me at all. 

And then I'm like, look at my feeding tube. Or here's my ostomy. And they're like, oh. I'm like, okay. But if I didn't have those things, would you still believe me? I'm not sitting here, making up a story. But just because they haven't heard of my illness because of how rare it is. Or because I look so healthy because I take care of myself. And I go to these appointments. And I take my medication. They don't think I'm actually sick because I'm healthy looking.

LS        

We hear that often. Is that why you advocate for making the kind of invisible, visible?

SH       

Yes, I do. I feel like especially in school, everybody always thought I was just another girl over there, making issues. Why does she have all these accommodations? Or I actually have a handicapped sticker so that when I go on campus, I don't have to walk super far. Because that's a lot on my body. 

And I get so many weird looks when I use my handicapped sticker. And I'm like, you guys just don't understand. Who are you to judge me? It's not like I got this for free or… I had a doctor sign off on this. It wasn't just something I made myself in Canva.

LS        

That's a good point. Because the Hidden Disabilities Sunflower, as you know, is what's helping bring that visibility to people. And hopefully, our goal is to reduce that stigma. 

Do you think it's a valuable tool? I know you probably do because you have it on your sash. But can you explain why you have it on your sash and what it's meant to you?

00:30:01

SH       

Yes. I actually heard about the Sunflower Project about, maybe two years ago. And it was actually somebody in Ogden, Utah, who is trying to bring it to Utah. Especially to make our community more accessible for people to come visit and travel. Especially, we have our ski resorts and things like that. They just want to make things more accessible for everybody. And especially those invisible disabilities. 

When I was competing in one of my competitions, a lady reached out to me and she goes, oh my gosh, have you heard about Hidden Disabilities, the Sunflower Project? And she actually gave me the cutest little gift bag of your lanyard and different little pins and all the cute little things. And I was like, oh my gosh, I had never heard of these. That's crazy. 

00:30:55

And I did more research. And I was like, this is such a valuable thing. I was like, I wish I would have known about this sooner. Especially travelling. Because I get so many people when I'm travelling at the airport that refuse to let me carry on my medical equipment with me. And I wish I would have been able to utilise this, so that they would be able to see this and respect it. And know that this is true. 

Because me just telling them, hey, these bags are full of medication, ostomy supplies. I can't check these at all. If I need these, I need to have them with me. And just because I had one extra bag being hooked up to my medicine, counted as a bag. And then I had my ostomy stuff and a tote bag. And then my TPN, I carried on in a carry-on suitcase. And they told me I had one too many bags and I needed a check one. 

And I was like, I refuse. And they literally told me to stand over here. And they were so rude to me. I've never been so afraid to fly. This was maybe my third time flying. I was flying by myself. I was trying to get to a conference that I was interning for. And I honestly almost missed my flight. Because they wouldn't let me get on the flight without checking a bag. And I had to check my ostomy supplies and I was like, well.

CB       

Did you complain about that afterwards or were you too traumatised by the experience?

SH       

I was too traumatised. In the moment, I really didn't know what to do or what to say. Because, like I said, I'm not a typical flyer. I don't know how that all works. I had been successful the last few times I had flown. I didn't know that I was going to run into this issue. And the people were super nice with me, checking my one bag.

And I told them, this is medication. They were like, okay cool, you're good. I was like, will I be good with one extra bag? And they were like, yes, if it's medication, we can't say anything about that. I was all set until I got to the gate. And the person at the gate was like, no, you're not getting on. And I was like, one, the flight is not full. It's 11 PM at night. You really can’t…

CB       

I can't imagine what that must feel like getting on an aeroplane and not having the ostomy supplies at your side for if you need them. That must have been a horrible experience.

00:33:49

SH       

Yes. I honestly… Because then I was like, if I get to this conference, I have to have those supplies. If they get lost or they get damaged or anything like that. I'm like, I don't know what to do. And it also had, not only my ostomy supplies, but all my tubing and vitamins and bandages for my central line. 

I was just carrying the medication that comes in the bags, just the liquid. I was just carrying the liquid with me. I was like, everything else was in that bag. I was like, if I get to where I'm going and I don't have that. I will have to turn around and fly back. Because I can't go without not having the tubing to set up my medication or the alcohol pads to clean my line or the saline flushes or the million things that were in that bag.

And I tried to explain to her. I was like, it's medical. And she was like, it can't all be medical. And I was like, it is. I'm willing to open this all up, if you really want. That is how adamant I was, that I was like, you're not going to sit here and tell me that this is not all medical. 

I honestly just felt like she thought that I was a brat or that I was trying to get my way. And that I was better than everybody else or something of that nature.

CB       

I'm sorry you went through that. It really does sound very distressing. Lynn, with passengers in the US at airports, have you heard other similar stories? 

LS        

I’ve never heard of one that has not let somebody take medical on the plane. But then again, I've never known somebody to have three or four bags of medical. But there’s a lot of people with disabilities that have wheelchairs, that have other things. 

00:35:44

There is a lot of overhead space that they should have allowed for. I'm sorry that happened. It's an awful experience. And I hope… I don't know how many years ago that was but I'm hoping that there is a little bit more awareness now. 

I do know that some of the American airlines are more aware of non-visible disabilities at this point. It's getting better, from what I can see. Because there's more and more participants. And I also think that TSA, they have a TSA Cares Programme now. And they have been so wonderful at most of the airports with our Sunflower wearers.

I hear good things about TSA now, too. When you go through TSA Cares or an airport that connects with TSA.

SH       

Yes, I've never had any issues with TSA. They've always been super sweet to me. Especially with my ostomy and my feeding tube. And having to check everything. Especially if I am hooked up to my medication during that time. And going through all my sterilised supplies. They're always super careful with it. They've been amazing. 

It's just been, honestly, boarding. Boarding has been my biggest issue, which is the one thing I'm like, why is that the one thing? But…

00:36:59

CB       

Do you mind if I ask… 

You are listening to The Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes. 

What is the scenario like for you? Have you ever had to clean your feeding tube or change your ostomy bag whilst in the air?

SH       

I personally haven't. I don't think I would have to change my central line. But if I did start having a leak with my ostomy, which, you never know. That would definitely have to be something that I would have to do.

CB       

Clean environments. What are you looking for when you're out and you're not in your own home space or your family? What other kind of things do you, go… When you go somewhere, do you go inspect the toilets first, as to whether or not you're maybe going to stay or the cleanliness?

SH       

I don't feel like that bothers me as much. Just because I'm just emptying my ostomy bag. It's not super crazy. But for my central line, I feel like that more so has to be more sterilised and a clean environment. But I always… I'm more than happy to clean stuff as well. 

But I think too, just finding a bathroom. I have to know where the bathrooms are at all times. Because I have to empty my ostomy bag once to twice every couple of hours. I'm like…

CB       

Right. That’s… Okay. 

SH       

That's a big thing.

CB       

What reaction have you had from your sunflower when you're wearing it?

00:38:39

SH       

I get people who ask me what it is. Because not a lot of queens represent the invisible disability community. But they do wear other pins for their social impact. Whether that's for donation, organ donation or the Red Heart Foundation or whatever it is. They'll wear their little pins. 

And I love that my pin is very different. And people don't know it. They just don't. And it brings up that conversation of, what is that? I've never seen that pin on another queen's sash or wearing that. And I love just spreading that awareness just by a simple image. I also have sunflowers on my Instagram and my TikTok next to my name and my illnesses.

And I love just putting the sunflower where I can, just to get people to notice it.

LS        

And I'm glad that you found the sunflower through Ogden. Because I do know the woman there at Visit Ogden. And she's been just doing a wonderful job trying to get the word out in Ogden. And it's nice to see that you found the sunflower that way. That's good. And I appreciate you playing it forward. And getting it out to more and more people. That's great. I really appreciate it.

00:40:05

CB       

Everybody listening to this could please also pay it forward by sharing this recording to help just to expand people's understanding of invisible disabilities. People who have to have feeding tubes and ostomy bags. And the challenges and barriers that Shaylee has shared with us today. 

And I'm sure there are many more because we haven't fully got into the mental health side. The pain levels that you must have experienced throughout your life must have been excruciating as well. We would really like people to share this. 

What would you say to a young person who finds themselves treading a similar health care journey to what you've been through and is worried about their future?

00:40:53

SH       

I think if I could tell somebody who's navigating this just at a younger age. Especially, maybe even my younger self, that you don't have to hide your differences. Your differences make you who you are. And you should be proud of them. And you should be proud of how far you've come in life.

It's not an easy path, obviously. But you'll shine once you are true to yourself and are willing to share your illnesses.

CB       

That's beautiful. Really beautiful. I've learnt a lot. I've seen people. Not lots of people, of course, but I have seen people with the…. With a bag. And they had a feeding tube. And they go around their business with their bag on. But it’s the first time I've had a full conversation about it. I feel like I've learnt a lot.

I want to also say thank you personally, from me for having this chat with us. 

If you're interested in any of the advice discussed in this podcast, please follow up with your GP or health care practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to The Sunflower Conversations Podcast.

VO      

If you'd like to share your Sunflower story or conversation, please email conversations@hiddendisabilitiesstore.com. Find out more about us or listen to this recording again by checking out our insights page at hiddendisabilitiesstore.com. You can also find us on Facebook, Instagram, Twitter, YouTube and LinkedIn. Please help, have patience and show kindness to others. And join us again soon. Making the invisible, visible with the Hidden Disabilities Sunflower.

00:43:00