special episode: World Lupus day
About the Episode
Special Episode: World Lupus Day | Halfway to Healing Podcast
Today is World Lupus Day, and we're marking it with a raw and reflective episode on what it really means to live with lupus.
Sam shares their personal journey – the flare-ups, the fatigue, the frustrations, and the fierce fight it takes to navigate a condition that so often goes unseen. We also talk about advocacy, diagnosis delays, how lupus intersects with other chronic conditions, and why awareness matters more than ever.
Whether you live with lupus, love someone who does, or want to understand it better – this one’s for you.
Transcription
Sam: Hello everyone! before we dive into today’s very special episode we are going to acknowledge something incredibly important. Today is May 10th, which is World Lupus Day. And for me, um it’s not just a date on a calendar, but it’s actually part of my everyday reality. Uh Lupus is a chronic autoimmune disease that affects the whole body. Um and it’s unpredictable and often invisible. It can be pain, exhaustion, brain fog and flare ups can knock you down without any warning. But, it is also resilience and adaptation and constantly learning how to listen to your body, even when the world doesn’t listen.
Sharna: So we wanted to hold space in this episode for what it actually means to live with Lupus. Not just all the medical stuff, the emotional, mental and everyday experiences that come with it. Because awareness isn’t just about information, it’s about being seen, being believed, and not having to prove your pain.
Sam: So, whether you live with Lupus like I do, or you love someone who does, or you just want to understand it a little better, this conversation we’re about to have is for you. Thank you so much for being here and thank you for listening with an open heart. Now, I will also say this might be a little bit more interview-like than our normal podcast episodes. Uh just because Sharna does not have lupus.
Sharna: I do not, no.
Sam: Um, so I’ll be talking about my experience with um with just everything to do with Lupus
Sharna: Yeah.
Sam: To celebrate World Lupus Day.
Sharna: Yeah. Be so more me asking Sam questions.
Sam: Mmm yeah.
Sharna: Yay.
LAUGHTER
Sharna: So, Sam tell us a bit about your own personal diagnosis journey. And I know a bit about it. Um I know. Like how long did it take you? I know you were misdiagnosed with a few different things along the way. Tell us a bit about that.
Sam: Yeah, so I, I am very fortunate. I think the average time for a lupus diagnosis is about six years.
Sharna: Wow.
Sam: Yeah.
Sharna: That’s terrible oh.
Sam: And I was incredibly lucky, because it took nine months.
Sharna: Wow. That’s still. I don’t know. For me, that still seems like a long time for a diagnosis.
Sam: Mmm. Um. I. I was diagnosed at, by a. I was diagnosed at 14.
Sharna: Mmm
Sam: And started showing severe um enough symptoms that it was. We had to investigate it when I was 13. Uh what happened was. I was uh trying to eat dinner one night um. It’s so funny, you go through so much in the medical system. I don’t know if this happens to you, but
Sharna: Mmm.
Sam: I can. I know it was July, I know it was a Sunday night, I.
LAUGHTER
Sam: Like I know all of these very vivid memories of it. Um, but I got this really really intense stomach pain.
Sharna: Ugh, gosh.
Sam: I, it genuinely felt like someone was stabbing me. And I was so. I felt so sick. I was like.
Sharna: Mmm.
Sam: I was nauseous, I had this horrible, horrible pain. And I told my parents. I was like “look I’m not, this is not. I want to keel over and die.”
Sharna: Yeah.
Sam: Um. And, my mum was like and my dad were kind of like “It’ll be fine, it’ll pass, it’s you know. Just eating. And so I actually had to wait three days before I saw a doctor.
Sharna: Wow.
Sam: And it wasn’t until I was. I was coming home from school on the Tuesday and I um I’m like in tears in the car with my mum. I’m like “I have to go to see a doctor. Like I there is something gen like I might be dying.”
Sharna: Yeah.
Sam: I’m pretty sure I’m dying.
Sharna: Yeah.
Sam: Um and so my mum took me to a GP and the GP was like “they’ve probably got appendicitis.”
Sharna: Oof, yeah.
Sam: Go to the hospital.
Sharna: Yeah.
Sam: Um, and then we went to the we went to the children’s hospital because I was 13. And they were like “Yeah, no this is appendicitis” and I was admitted and I had surgery. And this you you would think this is a very me thing to do but the day after I had surgery I went to school.
LAUGHTER
Sharna: That’s very you.
Sam: Yeah.
Sharna: So you.
Sam: I was getting an award at the assembly on the Friday.
LAUGHTER
Sam: I had surgery on Thursday and I wanted to walk across the stage. I did not do a very good job of walking across the stage. I just had surgery.
Sharna: Ah you little nerd.
Sam: I know. Um. But the pain didn’t go away. The pain and the nausea didn’t go away once they took my appendix out.
Sharna: Wow.
Sam: So, also, I don’t have an appendix. Um, but. Yeah.
Sharna: And so did you. Sorry. Did you have your appendix. So you literally had appendicitis surgery.
Sam: Mhhmm.
Sharna: And like that was not like the reason for the pain.
Sam: I did have inflammation on my appendix.
Sharna: Okay yeah.
Sam: So I was like. I had appendicitis but it didn’t. It didn’t resolve the issues.
Sharna: Right.
Sam: They actually, my immunologist actually thinks in hindsight that it was the lupus that attacked. I didn’t have appendicitis.
Sharna: Right.
Sam: But rather, my immune system kind of went after my appendix, which is why. And it was still trying to do that once I didn’t have the appendix. Which is why I still had all of the appendicitis symptoms. Um, but you know you, there’s no way to know, basically.
Sharna: Mhhhm yeah.
Sam: And so I still had pain and nausea and then I started getting fatigue and joint issues. Like I was just I was sick all the time.
Sharna: Mhhhm
Sam: Um, and a lot of people actually thought. I was bullied a lot in high school, especially in year 8, which is when all this happened. And a lot of people thought that I just didn’t want to go to school.
Sharna: Right.
Sam: Now, as I just said I went to school to the day after surgery. I don’t think that was the issue. Um. I don’t think it was. You know any normal kid would be like “Oh sweet, I just had surgery, I don’t have to go to school for two weeks.”
Sharna: Yeah.
Sam: And I’m like “Nah, next day thanks.”
Sharna: Like “Nah, I gotta get that award.”
Sam: Yeah. Gotta get that award. Um, and then it was back and forth because having a uterus and those reproductive organs. I got told a lot that “Oh, well 13 year old’s get their period.” I’d had periods for two years by this point.
Sharna: Yeah.
Sam: And I knew that wasn’t the issue but no one’s going to listen to a 13 year old I say in quotation marks “girl"“.
Sharna: Yeah
Sam: Um, let alone one that’s having issues socially.
Sharna: Mhhhm yeah.
Sam: You know, lots of hypochondria. The surgical team wouldn’t discharge us until I had signed a waiver.
Sharna: Mhhmm.
Sam: And my GP. My fantastic GP, who I still see to this day.
Sharna: Oh, that’s great.
Sam: Love my GP. Was like “Maybe it’s an allergy.”
Sharna: Yeah.
Sam: “Maybe you’ve got like Coeliac or something. And maybe there’s something that you’re eating that is contributing.” Like it was all like stomach kind of stuff. Like intestine stuff.
Sharna: Yeah, yeah.
Sam: So we. My GP sent a referral to an immunologist to check for allergies, coeliac. That kind of thing. And my immunologist who I also still see to this day, this is about nine months into all of this.
Sharna: Wow.
Sam: You know. Just and he did a just a comprehensive panel. He tested for everything. Allergies, Coeliac, autoimmune conditions like everything. And the blood test results was like “Yeah, you’ve got lupus.”
Sharna: Wow.
Sam. Yeah.
Sharna: Wow. So, quick but, like quick in lupus terms. But, geez that doesn’t sound quick to me. Wow. That’s insane.
Sam: Yeah. I mean, it very much was a luck thing. Like if it.
Sharna: Yeah.
Sam: You know, it’s little things. Like if they knew I had an eating disorder at the time they may not have investigated food related things. Because I wasn’t really eating very well.
Sharna: Yeah.
Sam: So, there’s a lot of you know what ifs. It’s very luck it was found at all I think.
Sharna: Yeah.
Sam: Because it’s, it could have been really easy to be like “You, It’s anxiety, it’s this, it’s you’re just, you just have a period and you that’s just kind of part of it. Or like there’s so many things that it could be.” Not, it wasn’t obviously but other people could have just assigned it to.
Sharna: Yeah. Yeah. Wow. So talking about you’re personal diagnosis story. You mentioned quite a lot about early on you got dismissed quite a few times.
Sam: Mhhhm.
Sharna: In like “Ah it’s just anxiety.” as you said. Um, “Oh it’s your period.” What must that have felt like, obviously you said you had your period for two years beforehand. You know what is normal for your pain.
Sam: Mhhhm.
Sharna: You know that it’s not just this. How’s that must be incredibly almost. I want to say very like, you know dismissive, putting you down. Saying “Oh, you don’t know you’re body because you’re not a medical expert.”
Sam: Mhhhm. I, I still face it a lot.
Sharna: Mhhhm.
Sam: Like, I find it really difficult to go to the hospital for physical health. I mean, and for mental health. But, I won’t get into that here.
Sharna: Yep.
Sam: For physical health, because it is so easy to even to. Now that I’ve got. Now that I’ve got the diagnosis a lot of things are dismissed as “Oh, you’ve got an autoimmune condition that affects you’re whole body. It’s just that.”
Sharna: Mhhhm.
Sam: I had these issues when it came to my hip, where they were like “You have an issue.”
Sharna: Mhhhm
Sam: It’s, I’m, I don’t quite remember what you asked but it’s, I’m constantly dismissed in medical settings.
Sharna: Yeah.
Sam: For one thing or the other because that’s just what lupus is, that’s just your mental health, that’s just XYZ. And it gets harder and harder for me. Like I have some pain days where I literally cannot get out of bed.
Sharna: Ohhh.
Sam: I can’t even. I can’t even sit up to drink a cup of water.
Sharna: Yeah.
Sam: Um, and if I was a normal healthy person without these issues, experiencing that. You would go to the hospital. Like you.
Sharna: Yeah. Absolutely.
Sam: If a, if an able bodied person was like “Holy shit! I’m in so much pain I can’t even move.”
Sharna: Mhhhm.
Sam: That would signify something’s wrong. And for me, it’s like “Uh well I’m just having a bad day, we’re just gonna lie in bed today.”
Sharna: Just another Tuesday. Wow.
Sam: Yeah.
Sharna: Um, so I know you said before that lupus is, it’s an autoimmune disease and you have flares and. So what, what exactly do these look and feel like for you? When you, you’re lupus flares up. What is your main, I want to say presenting symptoms.
Sam: Um, nowadays I’m on a pretty good med regime.
Sharna: That’s good.
Sam: Um, that means it’s mostly, especially with now, now that it’s getting colder.
Sharna: Mhhhm.
Sam: Well, cold for Queensland anyway.
LAUGHTER
Sam: I know you’re from Tassie, and it’s not really that cold.
Sharna: Yeah, I’m like “What is this?”
Sam: The biggest, the biggest thing is joint pain.
Sharna: Mhhhm
Sam: Like and muscle and like stiffness. Like my flare ups kind of come in like my hands are like I find it really difficult to use my hands in particular where it’s like and so the dexterity in my hands isn’t there.
Sharna: Yeah, mhhhm.
Sam: Where it’s like I might struggle to open like uh a soft drink bottle.
Sharna: Yeah.
Sam: Or, I might struggle to, like somedays I, if the pains really bad I can’t write very well.
Sharna: Yep.
Sam: Um, that’s like the biggest thing I kind of deal with now. Sometimes I get like a bit of a rash on my face.
Sharna: Mhhhm.
Sam: It’s called a butterfly rash, and it like. It just goes over like the bridge of your nose and onto your cheeks.
Sharna: Right.
Sam: So a lot of people think I’m often sunburned they’ll.
Sharna: Yep
Sam: Be like “Oh you’ve been out in the sun.” It’s like no. It’s just, it’s just my lupus.
Sharna: Ahhhh.
Sam: Um but I know, like I had, and this is kind of paired with some of the emotional addiction issues that I had.
Sharna: Mhhhm.
Sam: But I had, you know when I was 19 my kidneys started failing.
Sharna: Wow.
Sam: And that was, that’s kind of what a flare looked like a few years ago. That was a long time. That was six years ago now. Um, and it’s a little scary. Like I, when I started getting migraines, I had to double check that it wasn’t the lupus attacking my brain. Like it’s
Sharna: Oh my God.
Sam: A lot I have to do when I start experiencing something that’s out of the norm for me. Like getting migraines. Um, to double check that it’s not something caused by the lupus.
Sharna: Yeah.
Sam: Because my lupus. I have SLE-Lupus. I’m not gonna say what that stands for because I cannot pronounce it.
Sharna: Okay.
Sam: I’ll put it on the screen.
Sharna: Yep.
Sam: So that people can read what it stands for.
Sharna: Mhhhm.
Sam: And that, that particular subset of lupus is the one that it, it’s the first. The S stands for systemic. So it like your whole body.
Sharna: Wow.
Sam: So it can affect any organ including your skin. Um, it, it’s the reason I have gastroparesis now as well. So my stomach doesn’t empty properly because it, at one point in my, when I was about 16 started attacking my stomach.
Sharna: Wow.
Sam: Um, and it can cause like these things are like lifelong things. So, it attacked my immune system attacked my stomach when I was 16 and just for the rest of eternity I will have to take meds to help me eat.
Sharna: Wow.
Sam: Yeah. Um, and it contributes to a lot of things as well like, um my nutrition, I mean I, it’s not just obviously paired with the lupus, but having gastroparesis does impact my nutrition. Because I can’t digest food as well so I don’t get all the nutrition that I need from it, so I, you know which then impacts my eating disorder recovery.
Sharna: Yeah.
Sam: Because, you know, like if I’m, I sure you, when you experience symptoms, at least when I experience symptoms that feel like my eating disorder, it kind of triggers this hypervigilance in me like oh my gosh, have I been doing the right thing even though I have been it’s just really like a offset of my lupus.
Sharna: Wow. So it sounds really unpredictable and very confusing.
Sam: Mhhhm.
Sharna: When you have these flare ups especially having, I guess, what you could call more so like invisible ones.
Sam: Mhhhm.
Sharna: Like you were talking about the joint pain and the fatigue, because obviously that’s not something other people can see.
Sam: Mhhhm. No, yeah it’s. And because it’s unpredictable there are some days I’m great. Some days I’m like the strongest person on the planet.
Sharna: Yeah.
Sam: That’s probs a bit far. Um.
LAUGHTER
Sam: But sometimes I’ve got this strength and sometimes I don’t, and so I often. I might have to cancel on friends.
Sharna: Yeah.
Sam: Because I’ve woken up and I can’t leave the bed.
Sharna: Mhhhm.
Sam: And other people understanding that can be so challenging. And again, I’m really lucky I’ve got people who have in my life experienced a lot of different specifically mental health stuff and understand what it’s like to need to cancel and all of that and don’t take it too too I hope at least, at least not to me.
Sharna: Yeah.
Sam: They don’t, they don’t appear to be taking it too personally.
Sharna: Yep.
Sam: That I’m like actually I don’t have the energy or the effort today. To, to do that.
Sharna: Yeah. And say, how, how are you able to cope with this uncertainty and knowing that this is something you’re going to have for the rest of your life. Just knowing that one day you’ll be fine, and then the next day it, it might be attacking something like.
Sam: Um.
Sharna: Some other different organ.
Sam: I very much take my physical health. I’ve learnt. I’ve learnt to take it as it comes.
Sharna: Yeah.
Sam: So, I it’s a lot of like work that I have to do that’s like, almost like mental prepping. Like not over, like not becoming too overly hypochondriac about something, like.
Sharna: Yeah.
Sam: Everything at least in my experience, everything’s been kind of resolved eventually. So it’s.
Sharna: Mhhhm.
Sam: Making sure to book in. I talk to my GP a lot where I’m like “Hey, this is happening, can we check?” Like I’ve recently had a rash on my face thats been hot, itchy and bothersome.
Sharna: Hmmm.
Sam: And, sometimes that can indicate that I’m having a flare up. So I, I just waited to see my GP. I got the blood test form and she was like “Yeah, of course.” And, it’s kind of taking it almost one day at a time.
Sharna: Yeah.
Sam: Managing. There are other things I do. Like I have to make sure to you know, pace myself. Which I, you you would know, I’m notoriously bad at, seeing as you have access to my calendar.
LAUGHTER
Sharna: Yep.
Sam: Um, you know, little things like I do, you know in the past I haven’t really been doing it so much now, but using the Pomodoro technique. Which, if you don’t know what that is, it’s basically working for 20 minutes, taking a 5 minute break. Working, like it you know, setting a timer for yourself. I’ve used that in the past.
Sharna: Yeah.
Sam: To kind of help with the pacing. Um, there’s, I try not to spend too much time in the sun. That’s like a really big thing. Sunlight can trigger, especially with the meds that I’m on. Sunlight can trigger flares. Um, so I try not, like. I try to go out sometimes, because sun is good for you. But for me, it’s at a lot smaller doses.
Sharna: Mhhhm.
Sam: Um, so I, you know try not to spend, like spend all day at the beach or whatever.
Sharna: Yeah.
Sam: Um, you know, making sure, and this kind of applies to all of the conditions I’ve got, but just making sure that I’m trying it like trying to be as nice to myself as possible.
Sharna: Yeah.
Sam: I have other things, like I wear compression gloves on my hands, like if I spend um. I wear them pretty much all day in winter because it’s too cold for my hands to adjust.
Sharna: Yeah.
Sam: Um, but in the summer, like if I’m having a bad day with my hands I’ll put the compression gloves on for about an hour or two, and then my hands kind of get used to all of that.
Sharna: Yeah.
Sam: Um, there’s lots of little strategies I do.
Sharna: Yeah.
Sam: But it was really hard to get there, and I think nurturing my mental health, not, and the other mental health disorders that I’ve got, has helped a lot and being in recovery has helped so much because I can actually put these strategies in place.
Sharna: Yeah, yeah. So, you say, so this started for you when you were 13.
Sam: Mhhhm.
Sharna: And, from what I know about you, this is basically where your health journey sort of started.
Sam: Mhhhm.
Sharna: And so, when you were going through all this, initially, were you, well, I feel like there must have been at some point, there must have been some sort of grieving period for you, your old, well, I want to say old body, but, grieving for your body and your mobility.
Sam: Mhhhm.
Sharna: And the life you used to have before all this.
Sam: Yeah, so interestingly enough I went through my grieving period, like, when I was first diagnosed with lupus, I used alcohol and drugs to deal with it.
Sharna: Mhhhm.
Sam: Um, so I don’t remember a lot of my teenage years from that.
Sharna: Yeah.
Sam: Because I was so out of it, and intoxicated a lot of the time.
Sharna: Yeah, mhhhm.
Sam: Um, but I went through, when I was having issues, well when I was trying to find an answer for my hip. Um.
Sharna: Uh huh.
Sam: Like, in the issues I was having in my hip. I very much grieved. Like I was um, in high school I was a runner, like a cross-country runner. I was a gymnast, like I did aerialism, and I loved figure skating, and in the last maybe 6-12 months I had this massive grief that I wouldn’t be able to do those things again. Because I was now having more issues with my hip and joint and I’ve got a mobility aid now which I never had um, before the last 12 months. And so there was this massive period of grief that I had um, as I kind of started my soberity and realised that “Oh my gosh, I’m not actually an able-bodied person.” Because I’d been pushing through, and just pretending I was able-bodied when I wasn’t.
Sharna: Yeah.
Sam: Um, that I kind of had to do 10 years after my diagnosis.
Sharna: Yeah.
Sam: Because I hadn’t done that process, I don’t think I’d done that process yet.
Sharna: Mhhhm, yeah. Wow. Um, so, I understand that you have, for your specific lupus, lots of things can trigger a flare up.
Sam: Mhhhm.
Sharna: So, how do you navigate those specific changes in your body, like do you have like medication side effects, how does that affect you and your energy.
Sam: So.
Sharna: If you have any of those.
Sam: Yeah, so to manage things, as I’ve kind of already touched on, I have meds, I see my specialists, I have a lot of physical health specialists. Like I see a physio, an immunologist.
Sharna: Yep.
Sam: A neurologist, like all of these, all of these um, physical health specialists.
Sharna: Yeah.
Sam: Um, but they, especially the meds come with a lot of side effects.
Sharna: Yeah.
Sam: I know, uh, this would have been while we, when we were starting our friendship, but I actually went through a period where every single day I just could not stop throwing up.
Sharna: Oohh.
Sam: Um, I don’t know if you knew about that? But.
Sharna: No. I didn’t actually.
Sam: Yeah, every, especially, like I’d take my meds and I’d throw them up.
Sharna: Oohh.
Sam: And I worked out that it was the medication, some of the meds that I was on was causing it.
Sharna: Mhhhm.
Sam: And so, I spoke to, after ruling out like all of these other things, like I had all these tests, radiation done, like we were, and I, and I realised in a hospital stay, where I couldn’t take my meds, that I stopped, I had stopped throwing up until I could take them again.
Sharna: Yeah.
Sam: And I was like “I actually think it’s the medication that I’m on.”
Sharna: Yeah.
Sam: And, so I spoke to my doctor about it, and I was like “I’m pretty sure it’s the medication".” And we swapped meds, we found a medication that wouldn’t make me sick. And now.
Sharna: Aahh, that’s good.
Sam: I don’t throw up when take them.
Sharna: Nice. That’s amazing.
Sam: Um, crazy that. Um.
Sharna: Yeah.
Sam: And that helps a lot, because it means I’m actually getting my meds as well.
Sharna: Yeah, exactly.
Sam: Um, not just the one that is making me sick.
Sharna: Yeah.
Sam: Um, but, yeah, that’s kind of it. I have other things, I do stretching, I’m back into movement now. Um.
Sharna: Yeah.
Sam: Which has been really good. Um, and helping a lot like getting strength and flexibility back.
Sharna: Mhhhm.
Sam: Um, the compression gloves, um, like all of these little things just kind of help manage those symptoms that I’ve got.
Sharna: And, so are you able to, are you aware when you may be having a flare coming up? Is there anything you do to be able to manage that? Make the episodes not as intense or anything?
Sam: Um, it depends on what’s causing it. If it’s like a more major organ issue, not a lot I know. Um.
Sharna: Mhhhm.
Sam: It’s just, I just kind of have to deal with that as it comes. Like I said with the migraines that I started getting from the lupus.
Sharna: Yeah.
Sam: I had to do an MRI, like a CT, like all these things to rule out, like anything serious serious.
Sharna: Yeah.
Sam: Um, in terms of like pain flares and things like that, it’s more, I don’t know it’s coming, I usually happens, I wake up and I’m just in pain.
Sharna: Yeah, gosh.
Sam: So, thankfully I don’t tend to have flares, for me at least, I don’t have flares like over the day, like I don’t usually start fine.
Sharna: Aahh, that’s good.
Sam: And then by the end of it I’m like in all of this. I, I might be in a little pain across the day, but that’s dependent on what I’ve done.
Sharna: Yeah.
Sam: Um, but the really bad flare days, I just kind of wake up that way.
Sharna: Mhhhm. Wow. That’s gosh. And I know you, like, because I know you personally I know you have a very high pain threshold.
Sam: Oh, yeah.
Sharna: So, if you’re in bed, it’s like “Damn the pain must be really bad.”
Sam: Mhhhm.
Sharna: Gosh. Um, and so I know you briefly mentioned about the mental affect.
Sam: Mhhhm.
Sharna: What is that like when you have an unexpected flare and you have to, you know, cancel on people. How does that, I feel like that must bring you a bit of guilt you know, even though it’s not your fault.
Sam: Mhhhm.
Sharna: How does that, are you able to navigate that? Explain to people?
Sam: It really, it really depends like what, who I’m meeting.
Sharna: Yeah.
Sam: Um, but most people now in my life don’t have, like I don’t, I’ve worked through a lot of the guilt, like a lot of the guilt with my friends and family already. And I do occasionally need reassurance.
Sharna: Yeah.
Sam: But the people in my life now, I’m surrounded by people who love and care about me.
Sharna: Mhhhm.
Sam: Um, so, it’s never. It’s not as prominent. It’s not never prominent.
Sharna: Yeah.
Sam: But it’s not as prominent where it shows up, and usually just a little bit of reassurance that “Hey actually, that’s totally fine.” Is, is enough to kind of squash it.
Sharna: Yeah. Just give you that reassurance.
Sam: Yeah, um, yeah. I have so many people that are just amazing in my life that, they look after me, they care for me, they make sure that I can get my needs met when I’m having a bad.
Sharna: Yeah.
Sam: Like, it’s so, when I’m stuck in bed all day you know.
Sharna: Mhhhm.
Sam: Bring me food or medication or whatever I need.
Sharna: Yeah. Um, so why, why is World Lupus Day so important for you.
Sam: I think, I think with any of the awareness days, there’s a lot of invisible illnesses.
Sharna: Mhhhm.
Sam: And there’s so many things, everyone is fighting something that you don’t know about.
Sharna: Absolutely.
Sam: And so, you know, for me, celebrating World Lupus Day is about bringing awareness to something that people do have a lot of shame about, people do have a lot of guilt about.
Sharna: Yeah.
Sam: People don’t want to be seen as less.
Sharna: Yeah.
Sam: I know I’ve experienced all those things where its like, explaining it is complicated, like it’s an autoimmune disease.
Sharna: Yeah.
Sam: And I hope I’ve done justice, but, also explained it in a way that people understand. But it is really complicated.
Sharna: Yeah.
Sam: And it is, because it is unpredictable, I think, having people, having a day where people can celebrate themselves and the strides they’ve made, but then also bring awareness and talk about it. And be like.
Sharna: Yeah.
Sam: This does affect a lot of people.
Sharna: Mhhhm.
Sam: Is really important.
Sharna: Yeah, yeah. Just sort of bringing awareness and.
Sam: Yeah.
Sharna: Letting people know that, it’s, they shouldn’t be ashamed of it.
Sam: Exactly.
Sharna: Is there anything that you’d like other people to know, or things that you wish people knew about what it is like living with lupus.
Sam: Um, I think, not, just everything I’ve said really.
Sharna: Yeah.
Sam: I don’t think there’s anything else I could add, you know, and. If you are supporting someone with lupus, patience and understanding is always really important. Because, it’s hard when you’re body’s not coorperating with you and especially if, especially if someone’s going through it, um, something more serious. I know when my, when I was in the hospital for my kidneys, I didn’t have a lot of visitors, um, at the time, I wasn’t, my life was not filled with people who did love and care about me.
Sharna: Mhhhm.
Sam: Like I do now. so visiting people, bringing, you know, you know treats.
Sharna: Yeah.
Sam: Puzzle books or whatever your loved one is interested, is like into. Because that’s my interest and stuff.
Sharna: Yeah.
Sam: Um, and just being there, and almost holding their hand through it, is.
Sharna: Yeah.
Sam: Is always important.
Sharna: Yeah. Um is there anything else.
Sam: No, I think that’s everything. Happy World Lupus Day.
Sharna: Yes, Happy World Lupus Day Everyone. And thank you Sam for sharing so much information about it.
Sam: Mhhhm.
Sharna: Your personal journey, what’s helped you. Very informative.
Sam: Mhhhm.
Sharna: Hopefully, it helps someone out there.
Sam: Yeah, awesome. Thank you so much.