Advocacy in Action: Raising Awareness for Lupus

In this episode of Living Chronic, Brandy Schantz speaks with Mamello, a lupus patient and advocate from South Africa. They discuss the challenging journey to diagnosis, the importance of self-advocacy, and the role of support networks in managing chronic illness. Mamello shares her experiences with lupus, the misconceptions surrounding chronic illness, and her efforts to raise awareness through social media. The conversation emphasizes the need for understanding and support from friends, family, and the medical community, as well as practical advice for those newly diagnosed with chronic conditions. Be sure to follow Mamello on Instagram and Tiktok @blackgirlwithlupus

Transcript

Brandy Schantz (00:01.101)
Hi, this is Brandy Shantz and you're listening to Living Chronic. Today I'm here with Mimelo. She is coming with us to us from South Africa. She is a lupus patient and chronic illness warrior. So welcome Mimelo.

Mamello (00:13.762)
Thank you very much, Brandy, and thank you for inviting me. I'm happy to be here. Thank you.

Brandy Schantz (00:25.945)
So when you told me your story about getting a diagnosis, it sounded so familiar. I've spoken to so many people around the world on this podcast. And we all seem to have very similar stories. You really have to fight to get a diagnosis. And it takes some work. So tell me a little bit about your diagnosis and how you finally got there.

Mamello (00:47.501)
I actually got sick in February, the first of February, but I only got a diagnosis sometime in April. So it took about six specialists and six hospital admissions to get a diagnosis. So like you say, it is really a struggle because you have to advocate for yourself. You have to fight. You have to ask questions for you to be diagnosed properly. So it is a journey, a painful journey at that. So yeah, that's how long it took for me to be diagnosed.

Brandy Schantz (01:23.023)
I'm so happy you finally got your diagnosis. It's so hard. And I know I've often been congratulated on getting mine in only four years. So I think that says a lot about the journey so many people take to finally get a diagnosis. When you were diagnosed, like many of us, you were obviously too sick to do much of anything. And that's usually how this works. We have symptoms.

Maybe you have an idea of something might be wrong with you, but you keep moving forward. And it's not until we get really sick that things start to move forward and you really start to get to that diagnosis. So you were out of work for quite a while. And one thing that you really had going for you was a great boss who advocated for you.

Mamello (02:07.885)
Definitely, Brandy, definitely. I was off work for the whole of 2024. So, luckily, the Dean of the Faculty that I work at, I work at the University of the Free State in South Africa, luckily, he knew someone who had lupus. He knew how it works. So, he really advocated for me, was the recommendation of the kidney specialist to say,

she needs to be off work and I'm forever grateful for that because obviously when you do get sick, you get worried about your job. You're thinking, am I going to lose my job? And I need this income because hospital bills are also following you while you're at it. So I am really grateful for my boss. I'm really grateful.

Brandy Schantz (02:38.639)
Mm-hmm.

Brandy Schantz (02:44.175)
Yes.

Brandy Schantz (02:51.507)
I wish that, you know, I wish your boss could just do a big training class for everybody because it's so important. You know, we lose so many really great people from the workforce to chronic illness. And of course, for those of us going through chronic illness, doctors always telling us, reduce your stress, reduce your stress. And that's really difficult when you're scared and not knowing if you're going to be able to keep your job because you're always in the hospital or always at home sick or

you know, going to a million doctor's appointments. So having a great boss is such a big deal.

Mamello (03:24.97)
It is, it is and I'm forever grateful, Brenda. I don't want to lie. I always tell him when I meet him in the corridors, if it wasn't for you, I wouldn't be here. So I'm grateful for him.

Brandy Schantz (03:41.005)
Yeah, what a great person. Since you were diagnosed, you very quickly jumped up and became an advocate and you use your Instagram to help people understand what is lupus because so many people don't know what lupus is. What does that mean for you as a patient? What does it mean to your friends, your family? What inspired you to become an advocate so quickly?

Mamello (04:06.953)
I was actually inspired by my own journey on how I actually struggled to get a diagnosis. And even after being diagnosed, how I struggled with knowing what lupus is because there was no information about lupus in my circle or in where I wanted to go, where I wanted to look for information. Nobody knew what lupus is. Nobody talked about it.

It was just a struggle. literally had to go do my own research to read and know about lupus. So I advocated for that to say, listen, I need this. if, if when I was diagnosed, there was something like an awareness that I could go to people that I can talk to, you know, we discuss our fears, we discuss what's going on. That could have been great. So then I decided, let me just make an awareness group and just teach people about the sickness, this autoimmune because even when you say you have an autoimmune disease, people don't know what an autoimmune disease is.

Brandy Schantz (04:40.527)
Mm-hmm.

Mamello (05:01.929)
You still need to explain what auto... Now you come again with another word, lupus, then they still don't know what lupus is exactly. So I just decided, let me just take it upon myself just to teach people about this disease that we are going through and that so many people are going through. So I think that's the, that was the direction that I was taking when I started the group or the awareness page on Instagram. And it also went into TikTok and it also went into Facebook and my Facebook account. So that's, that's where I'm at right now.

Brandy Schantz (05:06.329)
No.

Brandy Schantz (05:33.017)
Mm-hmm.

Brandy Schantz (05:36.659)
It's so great because so many people, maybe they have heard of lupus, but they don't know all the things that you may go through. And I think that's so important, especially for the people who are closest to us, our loved ones, our coworkers, our friends, so they can understand that maybe you're not showing up somewhere for a good reason. Maybe you're not going for that long.

walk or hike with friends because your body just can't handle it or you're not able to you know spend all day long outside. Sharing these kinds of symptoms really does help our friends and family to understand why we sometimes do what we do because I think it's difficult to explain that sometimes.

Mamello (06:24.771)
It is, Wendy, talking about friends that do not understand, even family members. I remember this one time when I was actually meant to meet with my friend for lunch. It was a bit, it wasn't that hot. The sun wasn't that really out, but the sun was out. So I'm there putting on my sunscreen, even carrying an umbrella. And then she was like, why are you carrying an umbrella? It's not that hot.

Brandy Schantz (06:43.823)
Mm-hmm.

Mamello (06:48.229)
So I had to explain to her, no, because I have lupus, one, two, three needs to happen. I always need to have my sunscreen on. I need to have an umbrella or a hat. So talking about it, like you say, it actually makes people aware of what you're going through and then they can just understand why you're doing things the way that you are, you know, doing them the way that you used to do them anymore. So actually I've also noticed talking about it, it makes it easier for me and it also makes it easier for my friends and my family to accommodate me. So I think...

Brandy Schantz (06:57.327)
you

Mamello (07:17.793)
awareness is actually is actually winning now because people understand more what I'm going through you guys so yeah

Brandy Schantz (07:20.301)
Mm-hmm.

Brandy Schantz (07:30.999)
Yeah, you know, it just kind of sets expectations too. You know, sometimes people may not understand the whys, but you know, just setting the expectations that, you know what, maybe one day I'm good, but another day I'm not. Or the expectation, if we're going to do something outside, I need some cover, I need an umbrella, I need a porch with a...

with an overhang, I need something to protect me from the sun. And those little things are so important to helping us live a normal life without always having to ask over and over again, well, can we move this inside or can we go to this little place underneath the awning?

Mamello (08:12.581)
think now they can accommodate me. Obviously there are times when I feel better. I'll be like, it's fine. You don't have to. I already have my little umbrella or a little brim head that helps me. But most of the times they will ask me first, are you sure? Are you comfortable? You know, we want to make it more comfortable for you because the flare ups are no child's play because the next day I will wake up so painful. So I think I think I'm blessed to have a supportive.

Brandy Schantz (08:28.163)
Mm-hmm.

Brandy Schantz (08:36.087)
Yeah.

Mamello (08:40.175)
supportive circle, supportive family, supportive friends that will always want to check out on me first if whatever we want to do will suit me or not. So I think I'm kind of blessed with that and I'm grateful for that. I am.

Brandy Schantz (08:58.753)
Yeah, having a support network is probably one of the most important things in being chronically ill. You need that support network.

Mamello (09:06.466)
You

Brandy Schantz (09:12.535)
Yeah, think that's always one of the first things I say to people when they're first diagnosed, get your support network. Surround yourself with the people who are going to care for you and help you because it's difficult, it's almost impossible to do this alone.

Mamello (09:27.46)
And when you are an independent person, I don't even want to say just women because men can also get lupus. But if you are that independent person, it gets quite difficult sometimes to ask for help you get. But I always tell people that even if you don't go to, there's always those small groups, lupus groups, support groups, even if you don't go to the ones in your area where people might know you, even if you just attend one that no one knows you, but just get that support. Because honestly, support

Brandy Schantz (09:37.207)
Yeah. Yeah.

Brandy Schantz (09:45.027)
Mm-hmm.

Mamello (09:57.26)
Support makes a huge difference because when you are fighting this alone, you were thinking so many things. Am I going to make it my kids? You know, all those stuff. But if you have a support group of people that are already going through this or that already know your symptoms, I think that works quite well because I know there was a time before I got the support that I got, I was literally thinking the worst. You get, I was literally thinking the worst, especially when they couldn't diagnose me at that time. I think I was at my worst because why am I so learn? Why am I?

in the state and no one is helping, no one is talking about it. But eventually when I was diagnosed and I created a small group of awareness, that's when I think my mindset also changed to say, okay, I'm not alone. There are some people that also get it and this is how they've been living. So I think support is really great. Support is needed for any autoimmune disease. Support is generally needed.

Brandy Schantz (10:45.007)
Mm-hmm.

Brandy Schantz (10:55.563)
Absolutely. And you know, what a great example. You you talking about being surrounded by friends and family and having a great boss who could get out there and advocate for you. You know, these are so important. We need that everywhere. If we can just get as many people as possible to understand that that kind of advocacy is what helps us to grow is what helps us to, you know, become something that looks like our

regular old normal cells because we just can't do it alone. I don't care how independent and driven we were before our diagnosis.

Mamello (11:33.697)
That is true. You can't do this alone. You cannot. And the support that we need, doesn't even have to just be financially because, yeah, financially we go through a lot with medical bills following you wherever you go. But it can be just someone over the phone, you know, writing you a letter, writing you SMS, checking up on you to say, are you good? How did you wake up today? So support comes in a lot of form and shape, but we appreciate and we want all the support we can get because we need it.

Brandy Schantz (11:48.472)
Mm-hmm.

Brandy Schantz (11:52.367)
this.

Mamello (12:03.22)
We really do need it. Sorry.

Brandy Schantz (12:06.797)
Yes.

Yeah, it's super important. So you have some great messages on your Instagram account. me the stuff you really want people to learn and keep in mind and know about you, other people with lupus, and what it's like living with chronic illness.

Mamello (12:27.105)
I think the most thing that I want people to learn about people living with chronic illness, we are not lazy. I've noticed, the reason why I'm specifically talking about that one, I've noticed that most of the time people will assume that you are lazy, you don't want to do stuff, but they're not aware that actually we have to listen to our bodies. If our body tells you that today is not the day,

Brandy Schantz (12:41.485)
Mm-hmm.

Brandy Schantz (12:52.387)
right?

Mamello (12:56.114)
It is not the day. We need to listen to it. We need to obey or else the flare ups that are going to come after that, it's not going to be nice. So a typical example at home, my mom used to like saying, you were lazy. You don't want to cook. You're always sleeping. And I had to sit her down and explain to her, it's not about laziness. It's how it is at the present moment. I'm not the same person as I was before I was diagnosed with lupus.

Right now it's a whole total new world for me. So that is the main one, because people will say, you don't want to come to work or you don't want to, you don't want to go out with us. You don't want to do this. You want to sleep all the time. You just been lazy. We are not being lazy. We are just adjusting to how we are living at the moment. I think that's the main issue that I hate personally, that I want people to know that it's not about laziness, guys. It's not about laziness. So yeah.

Brandy Schantz (13:56.611)
No, that's the truth. swear, it sounds crazy. I used to wake up at 4 a.m. every morning for years. 4 a.m. go for my run or my bike, go for a swim, do my reading, straight to work. you know, when I first started really going through this and I realized that I was not functional unless I slept in until at least six o'clock, maybe 6.30. It was a shock to me.

I didn't even understand it. But unfortunately, that's my new capability. I can no longer wake up at 4 a.m. It's just, I mean, not if you want me to do anything. I can wake up, but you know, I'm just gonna sit there.

Mamello (14:38.432)
That's about it. And another thing also that I've noticed, we will make plans, right? We'll make plans that, okay, a certain date, we'll do one, two, three. And then that day when it comes, I can't do nothing. I can't even go out of the house or get out of my bed. And then it becomes a struggle that we're always making plans. We're always canceling. And then you need to learn.

Brandy Schantz (15:01.881)
No.

Mamello (15:04.723)
That's my body, that's how it reacts. So I just need to follow it and listen to it if I want to be better. I will just need to listen to it. That's all we can do.

Brandy Schantz (15:18.753)
Yeah, unfortunately, there's, mean, I'm still hopeful that maybe we can get some better treatments. Maybe we can learn more to better predict these things. Maybe we can find a cure in our lifetime if we're really lucky. But you know, the truth is, as confused as everyone else is as to why we're so healthy on Monday and can't do anything on Tuesday, we're just as confused folks. I'll never get used to it. I will never get used to it.

Mamello (15:46.961)
Same here, same here.

Brandy Schantz (15:47.959)
I want the plan so bad. It's in my nature.

Mamello (15:53.511)
Same here.

Brandy Schantz (15:54.989)
No. That's the takeaway. Just as confusing for us folks.

Brandy Schantz (16:04.449)
So what real advice would you give somebody who is just diagnosed and doesn't know what to do next?

Mamello (16:15.197)
I think I always tell people don't panic. Obviously if there's something that's wrong with you and doctors cannot find out what's wrong with you, you panic. And then they diagnose you with a word that you've maybe heard, but you don't know what's going on, you panic. And I've noticed that stress for me, if I stress a lot, I become more sick. So I always tell people do not panic, know. Visit regularly, doctors, go to your doctor's visit regularly, listen to everything that they tell you.

Brandy Schantz (16:22.447)
Mm-hmm.

Brandy Schantz (16:28.527)
Mm-hmm.

Brandy Schantz (16:40.707)
Mm-hmm.

Mamello (16:45.394)
For the time being, do not even listen to others outside that say, don't drink your meds. Try something like this. Don't do this, do this. For me, listening to my specialist really, really helped me a lot. So I always tell people that just become and find a support group. Don't be shy about it. Yes, I've noticed some people are very shy. Even in my, there are people that will come into my inbox in Instagram or Facebook to say, I was newly diagnosed and I'm scared of talking. You know, I don't know what to do.

Brandy Schantz (17:00.591)
Mm-hmm.

Mamello (17:13.529)
I'm handling this by myself. You really can't. So just find a support group that will help you to navigate this life and just honestly, just listen to your doctor. I don't think they will want you to not get better. get, yes, you will get advices from people to say, don't drink meth. Meth will make you worse. Whether do this, doing that. But for me, I would like to suggest that please do listen to your doctor. Please find a support group. Please.

stop stressing you know I know it's it's not easy it's easier said than done but please just try by all means just try to to be stress free and just take it easy one day at a time yes sometimes the flesh will come up and then you don't know what you ate what you did what happened you guess but eventually when the meds have already gotten used to your system or your body system is already getting used to the meds I think you will get better

Brandy Schantz (17:49.711)
Mm-hmm.

Mamello (18:05.55)
But for anything, I've always tell my people on Instagram or Facebook or my social platforms. I always tell them, if you have something, a question, I'm not saying I'm a doctor. I'm not a doctor, but I can help you with my personal journey, how it has helped me. So if you don't have a support group, come to me, come to my inbox. Let's talk about it. I even have some people on my WhatsApp that I've never met, but they are on my WhatsApp. We talk on WhatsApp, you know, we give each other advices and stuff like that. So I think my main thing is just,

Brandy Schantz (18:28.943)
Mm.

Mamello (18:35.417)
Just take it one step at a time. Do not stress, do not panic. Take it one step at a time and eventually you'll get there. You will definitely get there.

Brandy Schantz (18:48.653)
Yeah, that's good advice because it's so, it is so stressful in the beginning. It is easy to panic. And there's so many people out there, whether there be friends of yours, coworkers, acquaintances, or the endless internet with suggestions on what you should or shouldn't be doing and establishing that relationship with your doctor, your specialist, and working through your treatment plan with that.

person is really important. think that's great advice.

Mamello (19:19.436)
No, thank you. I've noticed that the minute when you... Okay, I don't know about your culture. Here in South Africa, the Black culture, when the doctor can't find out what's wrong with you, the next thing that people would think is that you are bewitched, right? Someone is bewitching you. So now you will go to a traditional doctor. And you'll go to a traditional doctor and then they will start giving you this concussion.

Brandy Schantz (19:39.714)
goodness.

Brandy Schantz (19:45.167)
Well

Mamello (19:47.979)
So don't listen to that. Go to the medical doctor. That's the only advice that I'll give you. Go to the medical doctor. They know best.

Brandy Schantz (19:55.681)
You know, it's funny you bring that up.

Mamello (20:00.375)
Thank

Brandy Schantz (20:00.899)
They do. Funny you bring that up, because in our culture, people won't think you're bewitched, but they will think that you have eaten something, probably gluten, that has caused this. And they will have every herbal remedy in the world to send over to you. And something starts with, you eating gluten? As if.

Mamello (20:20.522)
and sleep.

Brandy Schantz (20:23.033)
Gluten must have caused all of these problems in me clearly. It's the cultures are different. The people are the same.

Mamello (20:26.742)
So you see how this culture lives? Exactly.

Mamello (20:35.072)
So yeah, just listen to your doctor. Leave the other advisors.

Brandy Schantz (20:37.383)
It's, you know what, it's frustrating. I always just listen to the doctor, the one that says MD, maybe even DO those are good too. Nurse practitioners, somebody. Yes, it is, it is very interesting. I always say to people, yes, eating well does help you to feel better. That is true. But believe me, if I could get rid of my Crohn's disease, the drug induced lupus, the dysautonomia by cutting out gluten.

Mamello (20:45.984)
Saturday.

Brandy Schantz (21:07.415)
I'd be healthy as anything right now, because I can eat a better diet all day long. Yes. I love it. Different cultures, same stuff. We all go through the same stuff. That is the truth. Well, thank you so much for coming on this show. This has been a really great show and a lot of fun.

Mamello (21:08.246)
We'll all be healthy. We'll all be healthy.

Mamello (21:18.752)
My word.

Mamello (21:23.104)
Yeah.

Brandy Schantz (21:35.943)
We'll definitely have to have you back on again. You're still newly diagnosed, so I'd love to hear more about what's going on six months to a year from now and how you've been building your new life as a person living with lupus.

Mamello (21:45.172)
It is.

Mamello (21:52.646)
thank you very much Brenty. I really enjoyed my time here and remember I told you I've never been on a podcast before so my notes were a little bit all over but this was the most fun talking to a stranger so thank you very much for the invite

Brandy Schantz (22:06.979)
You did great!

Brandy Schantz (22:15.587)
Now, thank you for coming on. We always try to have fun here. That's what Living Chronicles about, fun. We're not that podcast that's not fun. That's never our goal. So I'm glad you came on. Thank you so much. And we'd love to have you back again.

Mamello (22:24.454)
flat.

Mamello (22:30.941)
will definitely be back, Wendy. Thank you very much. I really appreciate this platform. So thank you very, much.