#8 Skin Deep: Navigating Scleroderma & Health Hurdles with Haley Pilkington

From battling scleroderma and pulmonary hypertension, Haley Pilkington has seen the highs and lows of the healthcare world – high blood pressure, but make it fashion!

In this episode, join us for a rollercoaster ride through diagnosis dramas, medical gaslighting, and becoming your own healthcare hero.

Haley Pilkington - @hpilkington22

Riverside.Fm
Podcast Host

Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.

Chapters

• 0:00 Linear scleroderma
• 6:00 Comparing Healthcare Experiences: England vs. United States
• 15:25 The Importance of Healthcare Funding and Access
• 31:12 Healthcare Disparities and Unequal Treatment
• 43:53 Seeking Support and Living Life to the Fullest

Transcript

Shay (00:03.578)
All right. Hi everybody. Today, we're gonna talk all things medical, kinda related, body image kinda related. It's all centered around Miss Haley Pilkington. Hi. We also have another podcast, so I dragged her back on over.

Haley (00:13.378)
Yes.

Haley (00:18.853)
Hey! Hey.

Haley (00:26.117)
Yeah, here again. So yeah, what should we talk about?

Shay (00:28.626)
Here again. So I've been seeing lots of your TikToks lately about medical things, about all sorts of things. What is the lowdown? What's going on?

Haley (00:37.241)
Mm.

Haley (00:43.937)
So I've recently been starting to be like more active on social media with my health journey diagnosis journey because I don't know, can I just go into it? It might be like confusing, but I'm just going to go into it. But I have scleroderma, linear scleroderma, which has affected me since I was two years old. I got diagnosed with when I was two years old.

Shay (01:01.622)
No.

Haley (01:12.949)
And it basically it's a disease that eats away the fat muscle and like stunts the growth of limbs, basically. And that's what happened to me on my left arm and like left side of my body basically. So I was diagnosed with that when I was young. And then eventually my doctors thought it stopped spreading. And then they found that my heart was like different.

And the left side of my heart looks smaller than the right side of my heart. And I got diagnosed with pulmonary hypertension. Long story short, if you follow me, you can look up like the full story of it, but I have two rare chronic illnesses that nobody knows how like, or why it's just, I've been living with it since I was two. And then I got diagnosed 10 years later with pulmonary hypertension. And yeah, now I'm 28 and. You know, we just go through life.

Shay (02:07.438)
Wait, did you say you were diagnosed two years ago with the pulmonary thing? Oh, at 12, sorry.

Haley (02:11.177)
No, at 12. So 10 years. So it was like 2 to 12. I had slurred or I didn't think anything else was wrong. And then they diagnosed me with asthma, actually, because they I was having trouble breathing. And they thought that, uh, yeah, I had asthma. So they gave me an inhaler, but that shit didn't work. Sorry. Yeah, because it had nothing to do with that. Um, yeah.

Shay (02:34.666)
I wonder why.

Shay (02:40.074)
Wow.

Haley (02:40.221)
and then had to go on a bunch of medications for just to basically stop the progression of the diseases. So a lot of my experience has been like trial and error. And like, they'll just throw medications at you and see how you react to them and hope that like, it stops the progression or spread of the disease. And usually, like, at least for my experience, I didn't know if the bad like

reactions or symptoms I was having was because of my diseases or because of the medications. So it was just like growing up with that. I didn't really understand it all. I was like, why do I, I just knew I felt like shit all the time. But yeah. So basically.

Shay (03:22.89)
Yeah. And how was that like, so it was interesting because we obviously, we met in England and I didn't know half any of your issues. So how was that dealing with it in a different country? I remember when you were like, I wanna go back to get, you know, some healthcare. And I was like, why? What's wrong with over here? Well, I figured out why, but how much different was it for you? Was it like unsustainable over there?

Haley (03:29.96)
Yeah.

Haley (03:42.398)
Yeah.

Haley (03:51.729)
It was, I think there's a way to like, obviously, people do it. I just didn't feel safe there. Like in terms of the medical care I got. Yes, it was free, right? Not free for us because we were, you know, had to pay for pay for it with our visa. But for people who live there, it's free health care, but you can feel that it's free with the care you get. Like

Shay (04:00.672)
I agree.

Shay (04:19.337)
Yeah.

Haley (04:21.001)
I mean, the healthcare workers don't get paid enough to treat you nice. And that's just, I'm not like spreading any hate to the healthcare workers because you deserve to get paid much more. And I'm, of course they would be resentful when giving out care. Like they're not getting paid their worth. Like, come on. But I just didn't feel like, I felt nervous all the time going into doctors' offices. I felt like almost.

Shay (04:31.771)
Mm-hmm. Hell yeah.

Shay (04:38.432)
Yeah.

Yeah.

Haley (04:49.017)
unsanitary things as well. Yeah, hold on. Sorry, can we just pause really fast? I wanna tell my boyfriend to shut the fuck up.

Shay (04:50.906)
Mm-hmm. I couldn't agree.

Yep.

Haley (05:07.489)
Can you hear him yelling?

Shay (05:09.523)
Uh, I did a little minute ago.

Haley (05:16.577)
It's so fucking loud.

Haley (05:20.758)
Bro.

Shay (05:21.947)
Bro!

Oh, that I heard.

Haley (05:26.406)
Oh my God.

Uhhh...

Haley (05:33.297)
Okay, we're gonna continue, I'm sorry. Eh.

Shay (05:36.234)
No, it's fine. I couldn't agree more because I was so, I was just telling my therapist about this, how I felt so nervous and anxious in the UK because I thought, okay, so like, with the care that I got there, I also had similar disappointments and experiences. And I was like, okay, it got to the point where if something bad happens, I'm just accepting death because they're not gonna help me here in the UK. I was like,

Haley (06:03.537)
Yeah.

Shay (06:06.498)
if something happens, we're just dying. And here, I feel safe and I don't feel as anxious because I'm like, I know they got me, but.

Haley (06:08.245)
Like I...

Yeah.

Haley (06:16.125)
Like I feel less anxious about my.

like a death sentence, but more anxious about all the fucking debt I'm accumulating because our healthcare is not free.

Shay (06:27.788)
Yeah.

It's a different kind of anxiety. Yeah.

Haley (06:32.573)
Yeah, I mean, I don't feel like I'm going to die from like a medical issue anytime soon knock on wood. But I definitely feel like so much anxiety from medical bills and dealing with medical bills and such. So it's a different kind of anxiety. And I think like dealing with it in England. Well, here's actually a funny story. When I was trying to get my medications in England.

Basically, I just needed a note from my doctor from the States saying what medications I need. My medication's called Tadalafel, and it's actually also used as a type of Viagra for guys. So I went to order it. Yeah, it's like to open up the blood vessels, right? So...

Shay (07:01.643)
Mm-hmm.

Shay (07:27.138)
Okay, yeah.

Haley (07:27.937)
Yeah, so it's used for pulmonary hypertension patients, but it is typically used for men who need. Yeah, who need that help. So when I ordered it, the lady was like, um, do you know what you're ordering? And I was like, yeah, to

Shay (07:36.718)
I see you. Ha ha.

Haley (07:56.477)
Yes, I have pulmonary hypertension. I felt like I had to like keep explaining it. And she was just like, oh, okay, okay. But like, bro, like obviously I'm not, obviously I'm not ordering it for that. Come on, you see me? Come on, girl.

Shay (08:01.424)
Mm-hmm.

Shay (08:12.031)
Yeah.

You see me? Yeah, no, that was a different kind of anxiety. I really struggled to get my medication over there just even on time or regulated or anything. It was really horrible. And then of course when I'd had to go to the A&E or anything, it was like a nine hour plus wait. And I was like, well, good thing, you know, oh God, it was just so intense and here, so much easier, but-

Haley (08:23.378)
Yeah.

Haley (08:34.345)
Right.

Haley (08:43.678)
Uh huh.

Shay (08:43.954)
you pay. So I just wish there was a good middle ground between the two countries.

Haley (08:50.241)
I feel like Canada might be nice, right?

Shay (08:52.81)
Well, I thought so too, but I think Alex said it hasn't been great lately. I don't know though. I don't know. My resident Canadian, that's only, I only know one person. So I don't know. Maybe he just lives in a bad spot.

Haley (08:57.526)
Okay. It's just.

Haley (09:03.075)
All right.

Haley (09:07.005)
We just need to pay our healthcare workers more and like, fund, put funds from like, I don't know, supplying guns into healthcare, like free healthcare, or like...

Shay (09:17.762)
Yeah, I was like, why do I watch the Super Bowl this year with my mom? And I was like, why are we paying these football people like millions of dollars? Could they not just play football for like a million? Like what? And then like the rest go, you know, Taylor brought so much revenue this year to the thing. And it's like, why is football getting this much money? It's just a it's just like, I don't know.

Haley (09:29.224)
Yeah.

Haley (09:41.937)
Yeah.

Shay (09:46.922)
That could be said for anything I like as well. People are probably like, well, why does money go into your Broadway shows? Yeah.

Haley (09:49.982)
Right wise.

Right, right. Yeah, it's just like, but I think everybody would agree that money should be going towards staying alive. Yeah.

Shay (09:59.974)
Health care. Alive. Staying healthy, staying alive, you know, during COVID really, really showed me especially like how much these people truly do for us and how much they truly don't receive back.

Haley (10:15.123)
Yeah.

Haley (10:18.565)
and how much they sacrificed. I mean, so many healthcare workers now, like either have lost their lives or have like long COVID now. And because they were exposed first, they're the ones out there. It's just, ugh, it's, yeah, COVID really like changed the game because we were both in England at that time. And like, of course, so I had an issue as well. I had a bad reaction too.

Shay (10:21.14)
Mm-hmm.

Haley (10:47.653)
the first vaccine AstraZeneca. And since I'm like in the in the, the part of the group that's what is it called? Immunocompromised group. I got like the first round of vaccines. And that was before they knew that AstraZeneca was giving women under 30 blood clots. So I like had a really bad reaction to my second dose.

Shay (10:49.963)
Oh yeah.

Shay (11:10.431)
Yeah.

Haley (11:16.237)
And wound up having to go to the hospital because they thought I had a pulmonary, uh, a clot in my pulmonary artery. And which is like, it can be fatal. Yeah. It's like, should I call somebody? But my stupid ass is like, I'll just take an Uber to the fucking hospital by myself. Well, I know I probably should have had somebody come with me and I'm literally sitting in that, um,

Shay (11:25.89)
Death. Yeah.

What?

Shay (11:35.146)
I remember, I was like, girl, I was like, girl, um.

Shay (11:42.936)
Yeah.

Haley (11:46.653)
sitting in the waiting room just being like, whoa, I hope I don't die. That would really suck.

Shay (11:54.31)
really suck. Was it at that horrible, the one above the school, like around there, that horrible hospital? Oh god, it was so gross because again, the place was like covering cobwebs. I saw spiders crawling across the place. Like everything was falling, crumbling, dusty. I'll never forget. Sorry to interrupt you, but I have to tell everyone, my three listeners.

Haley (12:01.522)
Yeah.

Haley (12:18.089)
No, it's okay.

Shay (12:21.33)
When I had an OPGYN appointment over there, I got an ultrasound at that hospital. And it was like super humiliating. Like the staff was so rude in the first place. And then they just threw me into this room with like a metal slab and then didn't give me anything to cover up with. Nothing. I was just spread eagle naked on a metal slab and they were just moving this wand around. And then...

Haley (12:27.881)
Alright, I remember this.

Haley (12:32.001)
Thanks for watching!

Shay (12:48.598)
they finished and then she didn't even give me anything to wipe up. She was like, you can go. And I was like, I feel so used.

Haley (12:55.473)
Can I have a paper towel or something? Like, what the hell?

Shay (12:57.714)
I was like, um, okay. I felt so, ugh, it was just really a horrible experience. And it's like, that's sad because for people that have been traumatized by such events that could, that could really trigger people. And here I had an OBGYN just recently and I think the room's perfectly tempered. You get a little gown, the lights are dim. It was just like, what? What?

Haley (13:13.541)
Yeah.

Haley (13:24.253)
It was so different here. Like my OBGYN, I like call her almost every week because I'm like, I have a problem. I don't know. I'm a hypochondriac. So, but she's sweet. She's always like, oh, it's okay. It's probably this. I go in and she's like, so how have you been? Like just really being just the sweetest lady. And there, when I got my birth control changed, I have Nexplenon in my arm.

Shay (13:27.265)
Yeah.

Shay (13:32.278)
I'm dying. Yeah.

Shay (13:44.165)
Oh.

Haley (13:52.673)
and the chick just gave me a shot, like the numbing shot, and didn't wait five seconds before she cut it open and like took my thing out. And she was, I was like, oh, I'm not numb. And she was like, you'll be numb in a minute. And I was like, I felt everything. I was not numb in a minute.

Shay (14:05.767)
I remember. Hahaha.

Shay (14:12.378)
And didn't they not change it out for you for a long time?

Haley (14:17.369)
Yeah, it was just hard to get an appointment is the thing. It was like taking a really long time to get an appointment. And when I did, it was like fucking traumatizing because I felt like when I got it put in the States, I was completely numb. I didn't feel a thing. And it was in a position that was like really nice in my arm. I barely felt it. And this one ever since I got it put in, it has been like weirdly like, it feels like it's pulling on my skin. Sorry to get graphic. It's in my arm.

Shay (14:20.19)
Yeah.

Shay (14:25.486)
Mm-hmm.

Shay (14:44.462)
Whew. Yeah.

Haley (14:45.397)
But it feels just like when I lift like weights or anything, like it feels like it's pulling and it's just in a bad position. And even my doctors here said that they put it in way too deep. Like it shouldn't be like, so I'm nervous to have it taken out. I'm nervous that they're going to be like, fuck. Yeah.

Shay (14:48.97)
Ugh.

Shay (14:59.854)
Damn. The only thing I notice really is over there when they would do like the injections in your little arm, little arm, they would always bruise me and it would always hurt. But here, no one bruises me and it doesn't hurt. I don't know what's happening with the difference in education here. It's probably budget.

Haley (15:16.066)
Yeah, it's confusing.

Yeah, I don't know what that is. I think it is. I think it's just like all money. It all has to do with money, what we're putting out the care we're giving. I mean, to be if I wasn't getting paid what I'm it's gonna be Yeah, it's gonna be really hard to feel like I want to be nice to people if I'm just getting super underpaid and working my fucking ass off. And yeah.

Shay (15:26.674)
Yeah.

Shay (15:33.031)
I'd be stabbing you with that needle.

Shay (15:41.966)
Yeah. I didn't understand it at first when I got there, because I was like, why are you not doing what I'm used to? But then as the years went on and I saw more and more and how much it was just not good, I was like, oh, I see why you're probably not the nicest people today. They have people coming in there screaming, yelling. And I understand why, because no one can be heard. It's just like a horrific cycle.

Haley (15:48.935)
Yeah.

Haley (15:59.782)
Yeah, yeah.

Haley (16:09.981)
was literally a guy when I was in the waiting room when I thought I had a clot in my pulmonary artery. Just, I went to the doctor at 7 p.m. I left there at 4 a.m.

Shay (16:21.546)
Mm-hmm. Yep.

Haley (16:21.841)
So that's fun. And there was a guy walking around, I think he was homeless, I'm not sure, but he was walking around and had poop on his butt, just walking around with poop on his butt. And he was just walking slowly. And I saw him walk by once, and the nurses were like, where'd he go? And we all pointed like that way. And so we had like fucking police officers following him, but then he walked back in the other way.

Shay (16:35.018)
No. Okay.

Haley (16:48.733)
And it was like a constant, like, it looked like a wild goose chase, but this man was not running. He was walking so slow. I'm like, how are you not finding him? He's not just disappearing when he goes outside and he has poop on his butt. Like follow the scent. Come on.

Shay (16:58.158)
Thanks for watching!

Ha ha ha! In a cup of water.

Shay (17:07.946)
was once in the A&E waiting room and I saw someone army crawl in and no one did anything. You know, that's what I don't understand is like the nurses just watched him just army crawl to the front desk and they were like, what's your problem? I was like, uh, I don't even know, but someone get him a chair? Yeah, I just and then God I

Haley (17:16.025)
Oh my god!

Haley (17:30.729)
Can you go down to his level and ask?

Shay (17:36.918)
But at the same time, I don't blame y'all. I don't blame it. God.

Haley (17:40.469)
But I definitely think like it's, there are hospitals even in the States that don't give, yeah, like amazing care. It's where you are if you have money, it's all money and that's what's sad about it. Yeah, but anyway, I think I'm really, what I've been doing like with my social media stuff is I'm trying to become a patient advocate. So, because I'm sure you've probably experienced this like,

Shay (17:45.959)
are terrible.

Yeah.

Shay (17:53.086)
It's all money. Yeah, it is. I mean...

Shay (18:05.61)
Yeah.

Haley (18:10.037)
gaslighting from doctors and like blaming, like specifically I'm thinking about my mom who got diagnosed with cancer like two years ago, but they kept blaming it on her weight. They kept saying, you need to lose weight, you need to lose weight. But the reason she couldn't lose weight was because she had fricking tumors in her stomach that were growing. That's why she weighed what she did, like what she weighed and she couldn't lose weight.

Shay (18:24.098)
Mmm.

Shay (18:33.386)
Ugh.

Haley (18:37.349)
And at like that all the male doctors gaslit her. And then one female doctor was like, this is not right. And then she went to the doctor and got like her treatment and everything. But it's just, it's, I'm trying to, like patient advocates are somebody patients can go to, or if they're having trouble with their diagnosis, someone they can go to, to either have support, someone to talk to, someone who's been through a similar experience and can give them advice.

So I'm kind of like on my journey to become a patient advocate at a hospital somewhere. So yeah, but right now I'm working through social media, like trying to create that community. I'm also trying to join that community because I haven't, I've lived with these diseases for my entire life, but haven't actually like done my research into it. Because as a kid, you don't want to be.

Shay (19:12.59)
That's so cool.

Shay (19:20.022)
Mm-hmm.

Haley (19:33.841)
I didn't want to be associated. I was just like, I'm not sick. I'm not, I'm not, I'm healthy. Like I just wanted to go out with my friends and hang out and not think about like any diseases I had. I just pretended like it wasn't happening. And in reality that might've done like more harm because, or maybe it didn't, I don't know. I'm still like thinking about it.

Shay (19:43.799)
Mm-hmm.

Shay (19:54.082)
Who knows? You did what you could.

Haley (19:57.969)
Right, that's what my mom said. She was like, you were young. Why would you wanna think about that? Yeah, yeah, exactly. But yeah, so everybody's, but also talking about how everybody's health journey is different. And I was talking to my one friend because he's actually having some health issues recently and he's been pretty healthy his entire life.

Shay (20:00.798)
Yeah, exactly. You want to go play, you know? So go play while you feel like it.

Haley (20:26.945)
and now he's having like some chest pains and he might have something with his lungs. He's like in the process of getting diagnosed. And I was thinking about it, like what it feels like to be in a V with no pain. Like ever since I was young, and this isn't in a way that's like, oh, I feel bad for me because I have pain. It's not like that. It's like we all carry a certain level of pain with us that we just adapt to.

Shay (20:50.414)
Mm-hmm.

Haley (20:55.117)
And I was thinking about it, like, I don't think I've ever woken up with zero physical pain. And it's just wild to think about like people who wake up and they just have no pain. Like eventually you develop pain as you get older, you get those aches and whatnot. But it's, it's interesting. I've never, I've never known a different way and like how that affects your pain tolerance. It's just an interesting, it's just interesting to talk to other people about it.

Shay (21:03.657)
Mm-hmm.

Shay (21:22.039)
Mm-hmm.

Haley (21:23.745)
because he was saying how now his future is gonna be different now. Like he's not gonna have a morning where he wakes up with no pain. It's always gonna have like some level of pain and he's gonna have to adapt to that, you know? It's interesting.

Shay (21:37.702)
Yeah. It is interesting. It's like the thing, I can only equate it to like having a period and men just don't have that pain tolerance because they don't experience it. And it's just weird. Bodies are weird.

Haley (21:52.35)
Right.

Haley (21:58.801)
And in general, I think that's why gaslighting for women happens so much more often than men because I think in general, our pain tolerance is higher because we have to deal with that. And we don't know because I get bad cramps like to the point where I cannot move like it's over like I need to lay down I need a heating pad out. I'll get sick. It's not cute. And once you deal with that, how?

Shay (22:09.067)
Mm-hmm.

Shay (22:19.659)
Mm-hmm. Yep. Yeah.

Haley (22:27.505)
If there's something, another pain that could be bad and could be like something you need to see the doctor about, but you're like, oh, I don't know. Like, is this pain worth seeing the doctor? Like it's, it's hard to tell where somebody who hasn't known intense pain like that is probably like, ah, I need the doctor now. Like.

Shay (22:37.102)
Mm-hmm.

Yeah.

Shay (22:46.322)
Yeah, I just had a UTI and I didn't know it. And they were like, how did you not know? Was it not painful? And I was like, I don't know, it might've been. I don't know. Like, I just don't even know anymore. I just am always in pain. I don't know. So it's weird. This is weird. Bodies are gross.

Haley (22:57.781)
I just adjusted.

Haley (23:02.713)
Yeah, yeah, it's so weird. My mom literally was saying, she's like, after you give birth, you don't know what is pain tolerance. Like, she's like, I don't know what is bad and what's good, or like what I should go to the doctor for. I know I'm in pain, but is it bad enough to go to the hospital? Like, it's so hard to tell. Mm.

Shay (23:14.655)
It's anything.

Shay (23:21.773)
Oh... Mm-hmm.

Shay (23:27.658)
In the UK, I really struggled with that. I just quit going because obviously the hassle of just even getting someone was, I was like, it ain't even worth it. Like you gotta be near death for me to even go somewhere over there. But here I'm like, maybe I'll go. I think I'll go. See, maybe, but over there I'm like, I'll die.

Haley (23:36.315)
Yeah.

Haley (23:40.117)
Right?

Haley (23:43.854)
Yeah, now I'm kind of like...

doing more research, literally, I couldn't, I honestly think that's like one of the biggest reasons that I didn't apply for the visa is because of how unsafe I felt with my health there. And worried that like, yeah, like.

Shay (23:52.022)
I'll die first.

Shay (24:04.106)
It's why I haven't gone back, unfortunately. I thought about doing the next visa, but I was just like, I don't know, I'm really enjoying getting my health kinda checked out while I'm here and good. And it's like, they upload stuff to a portal here so I could see it on the internet.

Haley (24:25.725)
Literally.

Shay (24:27.338)
I was like, what do you mean? That's crazy. And what do you mean? I don't have to call before 8 a.m. to get an appointment and then line up around the block to get into the office. And then if I don't make it in time, they just cut you off and make you leave. Like, ugh. I'm like, this is nice. Baby me. Take care of me.

Haley (24:34.6)
Right.

Haley (24:42.407)
Yeah.

Haley (24:45.831)
It's.

It's so, it's like, do I want the free healthcare? I know, I wanna be baby, like, just take care of me.

Shay (24:55.406)
Why would you be mean? I just want them, like, I went into the OBGYN. It was just dim, the lights, and then I was the warm blanket. I was like, all right, you can go. This is so lovely. Ha ha.

Haley (25:05.457)
I know it's so lovely, but I do have anxiety every time I leave when I'm like, okay, that bill is going to hurt. It's gonna hurt, but whatever. Medical debt's just going to die with me, I guess.

Shay (25:13.494)
Those are facts, those are facts.

Shay (25:18.51)
It's so unfair. Yeah, it's just so unfair. It's so, life is unfair for everyone. I can't, it's hard to complain when, the care we're getting is good. So it's like hard to, but yeah, that price tag.

Haley (25:22.696)
It is.

Haley (25:31.174)
It is.

Haley (25:35.013)
Everybody's journey is different. Everybody has different issues they deal with. Everybody carries different pain, mental and physical, everything that like no one, no one pain is the same as the next person's pain. And it is interesting to be joining like the community again and thinking about, huh, everybody has something else. Everybody has something different that they carry. But yeah, medical health.

Shay (25:37.628)
Yeah.

Shay (25:42.732)
Mm-hmm.

Shay (25:49.814)
Yeah.

Shay (25:55.171)
Mm-hmm.

Shay (26:01.454)
Mm-hmm.

Haley (26:03.525)
can affect the mental health crazy. Crazy girl.

Shay (26:06.662)
I lived with a little person in England. And just seeing the struggles she went through with, you know, her body was definitely different than everybody else's and just the stares she got and the, you know, the care that she didn't really receive over there was just baffling. I just, I don't know how we don't know.

Haley (26:09.831)
Yeah.

Haley (26:18.323)
Yeah.

Shay (26:33.33)
more about bodies and how are we also not more accepting of everybody's different bodies?

Haley (26:39.449)
That's what I'm trying to understand as well, because why can't we accept, okay, this person has an illness or this person has something they're going through. Why are we, as a society, pushing them to do more than they can or have to push themselves to do more than they can? Because that's where depression comes in. That's where all, I feel like I have to...

Shay (27:02.378)
Mm-hmm.

Haley (27:06.469)
I've pushed myself for my entire life to try to be like a normal person. But my body just doesn't do that. I've worked so many serving jobs. And just recently I was like, I'm going to pass out if I keep doing this. And I have almost passed out at work. And I've just been like pushing myself. And people can do it. People can do it. But why are we not more accepting of the people that can't? Or the people that can't work full time jobs because they are disabled and we can't give them proper...

Shay (27:34.824)
Mm-hmm.

Haley (27:36.825)
like funds or medical care, like how, how can we be better? Like, it's just, it is absolutely wild.

Shay (27:42.082)
Mm-hmm.

Shay (27:49.011)
I wish there was like, I just wish I knew there was a way to make it better or have, but I don't know the answers. Like, I just don't know what we're supposed to do. I don't know because I'm just rambling. I'm just rambling because it-

Haley (27:57.383)
Yeah.

Haley (28:04.829)
But it's like, it's talking about it. It's like, because somebody told me like, everything you do has a ripple effect on other people like us just talking about it now, like social media other influencers put out there. Like that's why I wanted to get start doing it because a social media influencer who got diagnosed with pulmonary hypertension, like

later in her life, she almost died from heart failure, because usually pulmonary hypertension, they don't catch it until it's like almost too late. Because it just seems like you're out of shape. Like, they don't catch it until you're like, in heart failure. The only reason they caught up for me was because I had bronchitis and they took a CAT scan of my chest and they were like, that doesn't look normal. So she had an influence on me to join the community. And now I've been like,

Shay (28:38.91)
Mm.

Shay (28:42.158)
Okay.

Shay (28:52.674)
Hmm.

Haley (28:59.873)
trying to get more engaged with different like volunteer work I can do. And everything we do has a ripple effect. And if we can't, we can't change the system, like over that's not going to happen. We're not going to be able to change the system overnight, but we can reach out to one or two people who might be listening and might have some hope to like do more research or like feel like they're not alone and whatnot. It's got really heartfelt. Ew.

Shay (29:22.55)
Mm-hmm. What are you wanting from, like, the doctors? Like, if you could just, like, speak to them honestly, like, what would you say, like, help? Or, like, you're not getting it? Or are you mad? Are you sad?

Haley (29:39.712)
Um...

Haley (29:45.061)
like, I'm more mad. I'm I think that it depends on the doctor, right? Like, my doctors right now are super amazing. I have a great team of all female cardiologists. That's amazing. But I didn't always have that. And I think I would just medical gaslighting. I mean, that's the only thing that's coming to my mind is that

Shay (29:52.354)
Fair.

Shay (30:01.571)
Mm-hmm.

Haley (30:14.173)
like, let's listen to the person because honestly, nobody knows your body. I know doctors, I trust what doctors say I trust that they have all the science to back up certain things. But I also know my own body. And I know my reactions to things. And I know when I'm right. And I would also say trust yourself when talking to the doctor. And I would hope that the doctors would listen to you as a person, rather than just like, okay, these are all her symptoms. But

maybe like listening more to the history, your reactions to certain drugs or your reactions to certain like physical activities. Well, just no gaslighting. Don't be like, yo, lose weight. That's your issue. No, it's actually not. Because guaranteed, if my mom was a dude, she would not have been getting that treatment for sure. Like we were talking about it.

Shay (30:56.442)
Mm-hmm.

Shay (31:01.949)
No. It's actually not.

Haley (31:12.145)
If a guy was like, I'm having these pains, they do a CAT scan and find the tumors, you know? Like, it's just crazy that we, that it's so easily blamed on weight issues or like it's all in your head or it's anxiety. No, something's wrong.

Shay (31:19.619)
Mm-hmm.

Shay (31:29.726)
You know, I saw like some more stats the other day that related to that. It was like men are listened to, men are taken more seriously and then it was like, then women are taken more seriously, but then it's like black women and people with, you know, other things are taken like so not seriously. And then that's a whole other fucking issue, horrible issue. And I was like, God, I'm already treated horribly.

Haley (31:51.203)
Yeah.

Yeah.

Shay (31:58.986)
I can't imagine what people, other people go through. Yeah, people of color and disabilities, they're not being listened to. And it's like, why do we have such a hierarchy of who gets to be listened to? Yeah, who gets the best story? Whoever has the best one, you get the care. It's like, it just, oh, it's so heartbreaking.

Haley (32:02.609)
Yeah, people of color, like really, it's so, ugh. Yeah.

Haley (32:14.337)
Who gets the best care? Yeah.

Yeah.

Haley (32:26.333)
It's heartbreaking, but this is why the conversations are so good because like we have to advocate for ourselves as patients and people who just like, if you are, if you start to feel like in your body, you have to advocate for yourself, right? Like you always, even if your doctor is giving you pushback and maybe that's not the doctor for you. And I think I'm looking at my past, like maybe I should have gone to different doctors at one point. Like maybe I should have like,

been like, okay, I didn't like that way that doctor was speaking to me. I'm gonna end earlier than whenever I did. Yeah, because you got to trust your gut with that stuff. Yeah, it's hard. My mom literally walked out. My mom walked out of an appointment because of the way a doctor was speaking to her and me and she was like, actually, I don't want to speak to you anymore. And I want a different doctor.

Shay (33:03.319)
Mm-hmm.

It's hard to say that. Yeah. It's hard. It's hard because how are you s- Yeah.

Shay (33:19.17)
Good.

Shay (33:22.882)
Hell yeah. Good for her.

Haley (33:26.757)
I know, she don't, Caroline don't mess around.

Shay (33:29.602)
Caroline no miss Ram. I love that. Good for her. Does she have medical issues as well? Well, besides cancer as well, did she have anything with her heart or?

Haley (33:34.304)
Yeah.

Haley (33:38.929)
Yeah.

Haley (33:43.653)
Um, no, she didn't have, uh, she had, uh, what's that?

Haley (33:52.129)
She had like a thyroid like thing that she took medication for, but it was like stable, like thyroid issues.

Shay (33:56.669)
Okay. So is your, are your issues passed down then from anyone or?

Haley (34:04.421)
Right, I know they're not all of my stuff is super new and super fresh. Yeah. It's just a mystery like no record of heart disease or scleroderma. Yeah, I'm just a, I'm just a mystery box, you know, like it's just a whole bunch of fun over here.

Shay (34:09.486)
Unique to you. So unique, leave it to you.

Shay (34:20.29)
That's wild.

Shay (34:27.054)
That's cool.

Yeah, a box of surprises. That's it's scary to not know, I think.

Haley (34:31.133)
It's weird, it's weird. Like the two, yeah. That's the thing too, because I was talking about it with my mom as well. I'm writing a play about my journey, my health journey and my mom's health journey. And because we're both kind of there for each other and like exploring that relationship, mother daughter relationship in terms of like our health. And...

Shay (34:48.269)
Oh.

Shay (34:56.408)
Love that.

Haley (34:58.769)
I was thinking about it. It was like, she got diagnosed. Like once, once they caught the tumors, they were like, that's cancer. I know what it is. We're going to take it out and you're going to get the chemo you need. And now you like right now she is knock on wood cancer free as of right now. Um, but she has to get continual checkups, but they know what it is. Right. They know it's appendix cancer. Yeah. It was also really rare. It's super rare. Yeah.

Shay (35:12.247)
Mm-hmm.

Shay (35:18.718)
And which cancer was it again?

Oh wow. Never even heard of that. Yeah, I was like, I've never heard of that. Of course. Yeah, you guys are rare. You're just little rare gems.

Haley (35:28.837)
Yeah, it's just in my family. Like we get super rare diseases.

Haley (35:38.357)
Honestly. So yeah, so she knew what it was. Like the doctors knew what it was. Boom, tests run all good. My stuff, they don't know how it happened. They don't know if it's gonna start up again, like scleroderma, like, I mean, knock on wood, it won't. But it's so hard to tell what's going on in your body. And they don't know if my scleroderma caused my heart disease or.

Shay (35:49.806)
Mm.

Haley (36:05.201)
if it could cause other issues. Like it's so confusing. And that's why I'm a hypochondriac because anytime I feel like something that's like not right, I'm like, was that my scleroderma? Or is that something with my is that something different? Like, do I have something in my stomach now? Like I get like all worked up in my head. Yeah.

Shay (36:06.203)
Oof.

Shay (36:10.781)
Oh yeah.

Shay (36:22.436)
Oh my-

Oh yeah, absolutely. I would be, yeah, I'd be doing the same thing. I mean, I freaked out about all my stuff and it's, well, pain is, what is it, relative to the person. It's like, I can freak out about my thing, but it might not be a big deal to you. Everybody has their things and they all suck.

Haley (36:28.315)
Yeah.

Haley (36:38.277)
Yeah.

Haley (36:47.421)
Yeah, and regardless of what it is, it's still a big deal if it's a big deal. Like, yeah.

Shay (36:53.446)
It is because you know when your body is doing something weird. You just know and you may not know what it is, but it's not the norm.

Haley (36:57.521)
Yeah.

Haley (37:02.481)
Yeah, I think it's more like all the internal stuff I get nervous about. Like every time I get a fricking stomach ache, I'm like, is this period cramps? Do I have a tumor? Do I have, am I pregnant? Like, what is this pain that I'm thinking of? Like, is it gas? Is it like, did I eat something bad? I mean, you know about stomach issues.

Shay (37:13.672)
Mm-hmm.

Mm-hmm.

Yep, yep, you have to like narrow it down.

I have

I have a CT... Oh my god, girl. Mm-hmm. I have a CT scan tomorrow, actually, so I'm interested to see what they're gonna see down there, because they're gonna see my stomach, my uterus, all the things down below, where I have all the issues. Yeah, I've got the colitis, I got all them things, but they recently just found, girl, they found something next to my ovary.

Haley (37:41.918)
Mm.

Haley (37:44.97)
Yeah.

Shay (37:57.886)
And they were like, yeah, I know, of course. And they were like, it's like a 1.5 centimeter thing and we don't think it's a cyst. And I was like, it's a tumor. It's a tumor. So yeah, no, but of course I went straight to death. And yeah, and they were like, no, but I was like, is there anything else you could say? Like anything.

Haley (37:58.113)
Oh no.

Haley (38:07.425)
Why are we doing this? There's many things that can be.

Haley (38:15.401)
Yeah, right.

Haley (38:21.469)
Like, do we have to, why? Why do we have to freak ourselves out like that? But.

Shay (38:26.778)
I know, but I'm getting a CT tomorrow for it, so we'll see. Little terrifying. Yeah, but it's just not, it's just the whole medical system, it's just scary, because you just don't know, and you're not in control. And for me, that's like a big thing, the control. Like, I'm out of control of my body, I'm out of control of what you can do with it, it's just, yeet. Yeah.

Haley (38:31.125)
so hopefully everything goes well with that. That is scary, that's really scary.

Haley (38:46.022)
Yeah, I got a...

Haley (38:51.477)
Yeah, I don't have the knowledge to like, think of what the right medications are, what the next moves are, like I have to put my feet in you and you could be fucking me over. I just don't know.

Shay (39:02.238)
Yeah, and I have no idea even if what I'm telling you is correct, wrong, I just know what I feel. I don't know if that's conducive for you. I don't... you just don't know. It's just a whole clouded mystery.

Haley (39:08.669)
Yeah.

Haley (39:16.129)
Yeah. How did they find that? Like, is it, was it a ultrasound?

Shay (39:19.974)
Um, well, I recently, yeah, I just went like last week because I hadn't had an ultrasound since that fateful day in England on the metal slab. I said, forget this. I'm never doing this again, which is a whole other issue because then you're keeping people from doing the thing that they should be doing, which is getting checked. But anyway, I went and got checked finally and they were like, everything looks good. But

Haley (39:30.305)
Yeah.

Haley (39:39.185)
Yeah.

Shay (39:47.646)
there was like, they were like, I'm not sure what that is. They were just like, it could be like a giant lymph node, but they were like, it's not a cyst. And I was like, okay. And you know, and then you have to wait. And I was just like, well, thank goodness I'm not in England because I would have to wait. It took me two years to get a GI appointment over there. So I was like,

Haley (39:58.613)
How do you know? Yeah, it could be so many things.

Haley (40:09.839)
Yeah. If any specialist care would take me, like I tried to get a cardiologist and they were like, yeah, it's going to be a year. I'm like, oh, um, no, I'm going to be home by then.

Shay (40:18.61)
Yeah, like exactly. I would, I ended up just waiting for all my issues and would fly to America, come get checked and then go back to England for the next year and do it again. And it's just like that, it's no way to live. But anyway, I'm hoping it goes well, but I feel, I don't feel as stressed because I feel like they're gonna take good care of me.

Haley (40:29.408)
Yeah.

Haley (40:33.789)
Yeah.

Haley (40:40.809)
You're gonna be getting answers faster. Yeah.

Shay (40:43.814)
Answers faster, you don't have to just sit around and worry. That's like the worst. Just sitting around and worrying.

Haley (40:49.189)
Yeah, one, my last ultrasound I got because I was having like all that like random, like I was getting my period every other week from my birth control, but they were just making sure that they were ruling out everything else. So I had to get an internal ultrasound, which is not fun, girlies. No, no, no. And I hate those.

Shay (41:01.811)
Yeah. Uh huh.

Shay (41:11.366)
Yeah. Yeah, that's the one I got. That's what I did. It was not fun, but...

Haley (41:17.465)
It's so uncomfortable, but my results came back and they were like, okay, left ovary looks clear, right ovary could not find. I was like, where the fuck did it go?

Haley (41:32.769)
gynecologist and I showed her and she was like, oh yeah, that's nothing to worry about. And then she fucking, man, you and your gynecologist have to be so close. Like it's just crazy because she just went in there and she was like, no, there's your right ovary. Just feeling my right ovary. So yeah, that's, yeah, that's my story. So girlies get your ovaries checked.

Shay (41:41.935)
Mm-hmm.

Shay (41:48.564)
Okay.

Shay (41:52.19)
Yeah. Get them checked. And I think the other thing on that I'll quit pitting the countries against each other. But I don't think that they were as they were as in tune to female problems over there. Like health wise, I felt very ghastly over there. Meanwhile, over here, I really do feel listened to by female workers, especially. I really feel taken just more serious.

Haley (42:03.013)
Yeah, yeah.

Haley (42:18.155)
Yeah.

Shay (42:21.542)
And over there, it was like, they just didn't really understand PCOS or anything that really had to do with female anatomy, it felt like. It was just kind of a guess.

Haley (42:27.115)
Yeah.

And I do wonder if it was like where we were though, cause I'm sure there's other hospitals that are amazing in England. And maybe we just weren't in an area with a good hospital and good medical care because I mean.

Shay (42:34.395)
could very well be.

Shay (42:38.262)
Yeah.

Shay (42:43.566)
I agree and you could pay for private. I'm just a cheap bastard. So I didn't do that, you know, there's options But I when I saw Kate got cancer obviously recently I was like, I bet she got the best hospital over there She's got the best care and I was like, wow, I wonder what it's like Yeah, it's probably great for her

Haley (42:48.193)
Yeah, yeah, I mean who would?

Haley (42:55.722)
Yeah.

Haley (43:01.017)
Mm-hmm, mm-hmm. Yeah.

It's probably great. Like she's in the best medical hands. Yeah.

Shay (43:09.198)
Mm-hmm. And they're probably like, yeah, see what's wrong with our country. It's great, Kate's getting the best care ever. It's like, hmm. Try getting an appointment in Essex, all right? And then come talk to me. Then come talk to me.

Haley (43:17.837)
Oh man.

Yeah. Oh, it's terrible, terrible.

Shay (43:28.538)
It's terrible, but I'm glad that you seem to be... Do you have a more like... How do I put it? Like a vision on your... Your prob... Let me cut that out real quick. What am I trying to say? Do you have now like more of an outlook on your recovery or like what you need to do medication wise or like, do you have a more visioned plan of...

Haley (43:53.544)
Mm-hmm.

Shay (43:58.27)
what you need to do going forward for the rest of your life.

Haley (43:58.661)
Yeah.

Haley (44:02.225)
I mean, I definitely want to, because I haven't been treated for my scleroderma in years because they said it was inactive. Like when, yeah, so my last doctor I went to was in college and she basically was like, there's nothing new here. You've been off medications, nothing's changing, come back if something changes and thinks that my scleroderma has run its course on my body and if I feel a different...

Shay (44:10.038)
What do you mean? Like, they just don't check it?

Shay (44:30.11)
It can just do that?

Haley (44:31.873)
Yeah, yeah, linear scleroderma. So usually when you're diagnosed so young, it basically like eats away the shit it eats on your body and then it just goes away like or it will stop progressing. So that's what happened to me, I think. So I think it's I but I do want to like check up on it again. So I am trying to get more tests for like my scleroderma done.

Shay (44:41.678)
stops.

Haley (45:00.425)
just because I want to check up on it, like see, what's, are we good? I think we're good. I don't feel different. Like I felt pretty stable. Like I work out, I do my stuff to the best of my ability. And I think right now though, I want to like live different cause we can't get so caught up in the medical diagnosis of things. It just depresses you beyond belief. And I think there was a positive to living my life.

Shay (45:05.303)
Mm-hmm.

Haley (45:29.153)
trying not to think about how sick I was. Like there was that part of me that wanted to live like a normal kid. And I want to honor that as an adult as well. Like, don't get so caught up in the medical side of it because it'll create random shit in your brain and you think you're going to die, you know? So I think my outlook right now is like, I want to create awareness.

Shay (45:51.246)
Mm-hmm.

Haley (45:57.689)
I want to be there for people who are going through it. And I want to be there for myself and have like a good life ahead of me. However long that is, however I live it, I want to honor it more, not just like getting caught up in all the medical side of it. Like I want to have room to just live my life. Like I've done it so far and I'm still here bitches. I'm still here.

Shay (46:23.12)
Mm-hmm. You're crushing it. Absolutely crushing it. Hell yeah.

Haley (46:27.993)
Yeah, so I mean life is short, you never know what can happen, so just fucking do it. Just fucking live it. I know it's scary, but yeah.

Shay (46:35.47)
Couldn't have said it better myself. It is scary, but look at you. Look at you doing it. I'm so proud of you. Thank y'all. I'm so proud of us. We've come a long way, baby. I am very proud of us. Like, ugh. Oh, I am so proud of us. Let, I.

Haley (46:40.241)
Yeah, we both doing it girl, both doing it.

I am proud of us too. Mm-hmm, mm-hmm.

Haley (46:54.313)
Honestly, I think about it. Like, we've gone through some shit and we're still here. We're still here. Yeah.

Shay (47:02.27)
Mm-hmm. And it just... What would you say to the people out there that are in the midst of, like, a scary medical journey that don't have answers to their stuff, that are novice?

Haley (47:20.781)
I would say seek out. If you don't have a support system already, seek out one. I can be your support system. There's a support system everywhere. Go online, go to support groups, whatever you need to do because those people are gonna be your rocks through that. And try not to go on WebMD. Ha ha ha.

Just don't do meditation, do some journaling and talk to your doctors. Just try to be with yourself and not get so caught up in it because you're gonna drive yourself crazy. Just try to live your life and be happy because I mean, we could die in a car accident tomorrow. Like it doesn't, our medicals shit, it's gonna be there. It's not gonna be there. Anything can happen. So don't let it hold you back from living your life.

Shay (47:44.105)
Oh my.

Haley (48:13.641)
Whatever that means to you could just mean watching a movie, but that means getting up from your bed, going to the couch and watch that movie, girl. You know.

Shay (48:25.136)
That was beautiful. Put it on a t-shirt.

Haley (48:26.714)
Yeah?

Shay (48:29.95)
And where can the people find you? What are you doing right now? What do you wanna plug? Give us everything. What do you use for the support groups? Where do you find those? Where are you gonna try to do some advocating? What projects we got?

Haley (48:35.67)
Oh yeah, I mean...

Haley (48:46.425)
Yeah, Pulmonary Hypertension Foundation, Scleroderma Foundation, like the national foundations of both those things, great support groups and also Scleroderma United, it's a new foundation that I just kind of joined and started doing like interviews with and they have also support groups there and you can find me on TikTok at Haley May and yeah, if you want some funny content to make you feel a little better.

Shay (49:10.263)
Oh, lovely.

Shay (49:14.922)
Amazing. Well, thank you for joining me and sharing all about your health things

Haley (49:15.133)
But yeah. Yeah.

Haley (49:20.469)
Thank you for having me!

Shay (49:23.671)
You're welcome.

Haley (49:25.57)
Hehehe