From An Autoimmune Struggler to Health Pioneer: Sweta's Transformation

Imagine the strength it takes to not only battle multiple autoimmune conditions but to also travel across 40 countries seeking knowledge from experts and scientists. That’s exactly what Sweta did. Born with epilepsy, and later diagnosed with rare autoimmune hemolytic anemia, lupus, IVSC, Hashimoto's, and alopecia, she was determined to learn how to manage her symptoms and prevent other autoimmune conditions from developing. Her resilience and relentless pursuit of health led her to establish Healveda Health, providing others with the tools to overcome their conditions.

Sweta's story is one of victory over adversity. In this conversation, she reveals her 'Spoonie Toolkit,' a treasure trove of her top five must-haves for dealing with an autoimmune condition. You'll learn about the mindset changes and lifestyle alterations Sweta believes are key to maintaining a positive outlook amidst health challenges. She also discusses the 'Make Me Visible' campaign by Healveda Health, a movement that focuses on making visible the struggles of those with autoimmune conditions. Whether you are fighting an autoimmune condition yourself or know someone who is, this episode is filled with invaluable insights, inspiration, and practical advice. Join us as we unravel Sweta's inspiring journey and learn how to manage autoimmune conditions effectively.

https://healveda.health/make-me-visible/

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Transcript

Jen: 0:42

Hi, my Spoonie Sisters, I'm your host, Gracefully, Jen, and I am so excited I have Sweta here to tell us all about her illness journey, and some bonus stuff too. So, hi, Sweta, how are you?

Sweta: 0:59

today. Hi, Jenni, great to meet you.

Jen: 1:04

So okay, why don't we talk a little bit about your backstory, and then we'll kind of dive in from there?

Sweta: 1:14

Wonderful. So I would say the story is very unique because I started having autoimmune conditions when I was born and no one really classified them as autoimmune conditions. So I was born with epilepsy and I was taking anti-seizure medication for a while and I was always getting sick. No one knew why I was always getting infections and then I had my tonsils taken out and then at the age of 19 I was abandoned by my family at that time and I had a near-death experience. Friend of mine had taken me to the ER and she was like a surrogate mother and they had found out I had something called autoimmune hemolytic anemia, which is classified as a rare disease and an autoimmune condition, and at that time I realized I'm like what is this autoimmune Like? This is the first time I was hearing that.

Sweta: 2:22

So the doctor explained this is something I have to live for the rest of my life with. They don't know what caused it. I barely stayed alive because my hemoglobin at that time was a 3.0 when I went to the ER. So they had to like match my blood in the blood bank. They had to put me on steroids. So it was a very acute situation and that near-death experience changed my life around these conditions and knowing how serious they are and how serious they can get. But you know, at the other side of it I also after that, I also had Hashimoto's, lupus, ivsc, alopecia, the typical autoimmune conditions, and these are all the conditions I was able to overcome, but at the time they affected every part of the body, from the mind to just the functionality, to my daily performance, behaviors, and, like after you overcome these conditions, you realize what it's like to live with them and how debilitating it really is. So yeah, that's my diagnosis story in a nutshell.

Jen: 3:46

Wow, wow Okay. So were you diagnosed that day in the ER or did it take some time?

Sweta: 3:54

Oh, I was hospitalized for six months. So yeah, they did like MRIs, they did the CAT scan and then they. You know, luckily there was a hematologist because it was a state of the art hospital. Had I gone to just a regular hospital I don't think they would have been able to diagnose me, so I got really lucky.

Jen: 4:19

Wow, yeah, I would definitely agree you got really lucky, but that is amazing that you were able to be at such a facility to get the care that you needed.

Sweta: 4:30

Yeah, in just the right time. So, yeah, the doctor at that time had said you know, if I waited another four hours I probably would have passed away, given that my body didn't have any oxygen capacities. So it was something that taught me the importance of health, and at that time I became very curious. I was always asking the doctor a million questions and they were tired of it.

Jen: 5:02

Wow, okay. So how did it go that six months Did you have visitors come to see you? What was it like?

Sweta: 5:10

I mean, you know, I had like my surrogate mom and she came to see me here and there.

Sweta: 5:18

It was a lot of time that basically I took for myself. At that time I realized, you know, I was, I was over giving, I was really putting myself out there to be a service for others and it kind of got me into this really stressful state. So I was reflecting upon that and just trying to connect the dots with the disease and how I wanted to live my life after that, what my stress limits were. You know how much I plan to do for others and how I'll take care of myself moving forward, so these sort of situations don't happen. But it taught me a lot about the body functionality. It taught me a lot about the healthcare system and how it works and you know what is not working. So it was. I would say it was an interesting experience. But it also gave me a lot of gratitude in terms of being able to just be there at the right time to get the treatment I needed and to have the right experts know what was going on.

Jen: 6:39

Wow, that's incredible. So, looking back, what do you wish you had known at the beginning of your journey? Is there anything you really wish you'd known at that time?

Sweta: 6:51

It's.

Sweta: 6:52

You know, in these situations, when they get to this level of being so acute, you want to almost know how do you prevent these situations from happening, how do you prevent other conditions from happening?

Sweta: 7:10

And after I had Hashimoto's, I was just thinking about that, like what is the way to prevent more of these conditions from developing in the body, and I went on a mission. I traveled to 40 different countries, I met with all types of experts and scientists to understand this on a deeper level, because at that time I just could not risk putting my health, you know, in these sort of situations and having to perform in the workplace at the same time. It was just too much on the body to be able to have my health dominate and also have to perform and also have to take care of these responsibilities. So that's when I had the education on how to prevent these conditions, what people can do to really take care of their bodies and manage their conditions and symptoms and keep them at bay, and that's why I developed Heal Veta Health, so they didn't have to do all that leg work.

Jen: 8:21

That is so cool and I want to put a pin in it. We're going to make sure we come back and talk about Heal Veta, but in the meantime, what would you think are the top five things that are just a must-have in your Spoonie Toolkit?

Sweta: 8:39

I would say the infrared sauna definitely. I would say a lot of. I've done a lot of detoxing in terms of using vitamin D, omega-3 oils. I use a lot of oxygenation facilities that provide that level of oxygen in the body to reduce the oxidative stress. So I would say oxygenation is another one. And then I would also say having magnesium is huge by glycinate, because it kind of just brings all the cells to homeostasis. And my CGM, which keeps track of the blood sugar and helps me understand the blood sugar activity throughout the day. Wow.

Jen: 9:36

I think those sound like really important things and thank you for sharing, because I'm sure that somebody out there needs that information. Yeah, so my next question for you is we're going to cover tips of encouragement Do you have any advice, or even mindset tips, for others that are in a similar journey as you?

Sweta: 9:55

Yeah, I mean, you know, in these journeys it's like I see so many of us following everything to a T and then not getting the results. You know, and this was repeating pattern in my life as I went through these tribulations of trying so many different things on my own body, and everyone has their own mix of what works for them. So, you know, my mix may not work for somebody else, but in terms of the things that really impacted me and the mindset was just like continuously trying, despite what others around me or what people were saying. Externally, like a lot of us, you know, we have to work out, but a personal trainer doesn't understand the body functionality of someone that has autoimmune. So, you know, as an athlete, I would go work out and they said you're not trying hard enough or you're not eating the right diet that I propose, and I would be following everything to a T. So you know, I said, hey, I know my body better than anyone, I'm going to do this myself. And I became the fittest person I could be and my trainer came back and said, hey, are you using the methods I gave you to for exercising and dieting? I said no, I'm using my own methods and they're far more effective for my body and you know these are lessons I learned over time was really mastering the mind and the body connection to a point where, if something is off in your body, you know how to fix it.

Sweta: 11:43

You know what's going on, you feel safety, you don't feel like you have to be in this panic mode of running to the doctor every time, and so I started to just do my own lab tests. I started to do my own, just taking care of my own body and being able to manage my own health and not giving up and just keeping that mindset of I can do this. You know, whether I'm down for the count or whether I'm, you know, like not feeling that way, that that good to be able to perform, I just tell myself I can do this and I will show up. Whether I'm sick or not sick or going through crazy circumstance, I've always had the ability to be able to show up in any situation. So these are a couple of things that have kept me going throughout this journey and also really wanting to be able to help others. That's something that's like my inner fuel.

Jen: 12:57

That's wonderful. Thank you for that. All right, did I ask you this one? Maybe I did. No, I did not. I'm already losing track. Okay, how do you maintain a positive outlook despite the challenges that you face?

Sweta: 13:14

I would say, you know, being able to help others, being able to know that my story and my experiences and not even outside of autoimmune can help a lot of women out there who had to, you know, grow up alone or had to live a single life, and they go through these circumstances and situations that most people wouldn't, and I have that compassion and understanding for their pain from a very non-judgmental place, and that's something that I see myself providing in the future, but that keeps me going on a daily basis, because I can understand one's pain at a deeper level, just because of all these circumstances and unforeseen situations, tragic situations I've been in, aside from just autoimmune conditions, Wow, and you know, I think that's kind of an answer that I think most of us would probably provide, because that is where we get our positivity from.

Jen: 15:17

So who or what lifts your spirits on a difficult day?

Sweta: 15:24

I would say music, that's a good one. Music, you know it's. I always go salsa dancing. I've been dancing for nearly eight years and I think you know something about salsa dancing always releases that negative energy within and it just puts you into a positive state. It's almost medicinal.

Jen: 15:50

That would be so much fun. I don't know if I could do it, but that would be so much fun.

Sweta: 15:56

That's the only form of dancing I can do. I cannot do any other form of dancing.

Jen: 16:04

Yeah, mine is all over the place. No one needs to see that. All right, so resources Can you recommend three accounts articles, blogs, websites, anything. Is there three somethings of resources that you would recommend?

Sweta: 16:21

You know resources. I mean if there. I would say you know I always follow, like Dr Weston Child he's pretty, he's a good doctor when it comes to just the thyroid side of health. I also read a lot of medical research through like PubMed and companies that provide that medical research. I'm also trying to build something that will allow people that do have autoimmune conditions and want to understand medical research and have that comprehension of it, and I want to build something that will make it more feasible for them. So that's something I'm also working on and all of the information I've received is mostly through medical research conferences and specialty doctors like Dr Weston Childs or doctors that have had autoimmune conditions themselves. Because they know the journey, they know what it's like. They can help you navigate.

Jen: 17:30

Exactly. I think that's a really good point and they're there. I think that's a really good point. But I think that's a really good point, and I think that's a really good point. And there's a lot of people that have that kind of experience that you might have to find them.

Sweta: 17:46

You might have to do some digging or ask people for recommendations, but there are some great doctors that have the same experiences and understand Exactly. Yeah, and it's it's hard to find those doctors, but you know, I think like there are sources. That which makes it really tough to find, like, what is the information I should listen to? Because throughout my journey I read a lot of conflicting information. Like, some doctors in the Chinese medicine world say that vitamin D is non-essential. But you know, in US we say that you know, vitamin D is like if you don't have vitamin D, you're pretty much going to get sick. So it's like who's right? They're both doctors, they both have credentials.

Sweta: 18:37

Which, which modality is for your body? And that's something that I wanted to learn, you know, in my journey of traveling to all these countries was what there are so many ways to heal ourselves. Which way is best for my body? Because in some cases, like the acute case of having that autoimmune hemolytic anemia, nothing was going to help me besides steroids and blood transfusions at that point. But you know, right now, where my body is not going through that severity of the disease, I can explore other modalities and see how I can manage these conditions and like live a life where I don't have to constantly be debilitated or feeling like I can't do things I want to do. So I think it's exploring these modalities. There are about 50 different modalities if you look at it, and they all provide so many no-transcript pieces of information that are that's vital to our own bodies. So that's something else that Heal Veda Health does is it explores different modalities and helps you explore different ways of basically healing yourself.

Jen: 20:00

OK, so I'm trying to think of how to transition this, but I'm just going to dive in. Tell us more about Heal Veda. This is something that you've started. When did you start it?

Sweta: 20:13

So I started it in 2020 because I was so isolated with my symptoms with Hashimoto's and at that time I was at the tail end of overcoming Hashimoto's. I was on doing multiple treatments and realizing, ok, well, you know, I took thyroid medicine. It didn't work for me. What are the other options out there? So I just started building a community via Facebook group and basically this community started growing up to 3000 members who were living with Hashimoto's and they were all sharing their stories at the time of just their struggles, what they were dealing with, and I realized there was a huge problem. And that problem was that there was no one there to help them navigate these situations.

Sweta: 21:09

And I didn't see myself as a coach.

Sweta: 21:13

I had a lot of knowledge, I had this wisdom.

Sweta: 21:16

I wanted to share these gifts of how I overcame these conditions, when I knew that, hey, I could help these people. Given that they have responsibilities throughout the day, they probably couldn't devote their life to their health like I have, so let me just provide them what they need. And so I started doing that and I had 200 members I was closely working with in a pilot program setting and I saw that somebody who can understand their pain, someone who can work through their struggles and help them piece it together from a starting point to the end point of their journey of overcoming a condition is very valuable to them, which was the starting point of building Heal VEDA and I thought why don't I do this on a wider scale and have other people like myself, other trauma-informed coaches, to be able to help people who have autoimmune conditions and help them build their own communities around these conditions? So it's really a place where people can find communities around their conditions. People can work with trauma-informed coaches who moderate these communities and also experts from all different modalities to find solutions.

Jen: 22:45

OK, the next thing I want you to bring up is you actually have a campaign that you're doing right now. Can you tell us a little bit about that?

Sweta: 22:53

Yeah. So this is the make me visible campaign and it's really a movement. And throughout my journey I just felt that I was kind of always in these situations of injustice and I always had to be the person that took a stand. I always had to be the person that had the courage to say no, this is not right, you will not treat me this way. And even then, people did not understand, people did not believe me and believe that this was a serious condition and something that people had to be accommodated for.

Sweta: 23:36

So I felt that, you know, make me visible is a campaign to help others be seen, to help their struggles, be out there so people can understand and have compassion and also have that acceptance around these conditions, so they don't feel isolated. When they have to go into a social setting and you know they, they're, everyone's drinking and they can't. Or they have to go out for dinner with a group of members and everyone's having enchiladas and they are having a salad, you know it's. It should not be unacceptable, it should not be seen as weird and we should be accepted in a society that has freedoms and rights for everyone, just as everyone else's. So throughout these experiences, I discovered that there's a need for people to be seen and I want to drive that need and I want to be the voice for people to be seen, with their conditions.

Jen: 24:46

OK. So if somebody that's listening to this right now wants to join in in your movement, what do they need to do?

Sweta: 24:55

So if they want to join the movement, they all they have to do is share their story at healvedahealth and then, once they submit their story, they will receive an email where they will record a small two minute video of a time when they had to compromise their health or feel like their health was compromised, just so they can fit in to a certain situation or circumstance that they were dealing with and how they would want to change that in the future, and then simply tag another person and make them visible. So there are so many people out there that are suffering in silence. They all want to be seen, but they're afraid to be seen, and this is the movement that will allow them to be seen for who they are.

Jen: 25:49

That's wonderful and, for those that are listening, I actually did this. So when this launches, you'll get to see my video. Honestly, I couldn't think of a particular time, but what came to my mind was how I always felt, like people didn't see me as sick with my rheumatoid arthritis, but as soon as I had the allergic to reaction to my TNF inhibitor causing the postural psoriasis, that's when people took it seriously, because it was visible, it was all over my skin, and so that's when people were like oh my gosh, like something's wrong. You are sick and it shouldn't be like that. I should be able to tell you that there's something wrong and have you treat me the same way, whether you can see it or whether you cannot.

Sweta: 26:40

Absolutely, and I think you know it's tough in the world we live in today because there are people that you know try to get away with the. It seems like people without a union are just trying to have an excuse sometimes, but it's not that way and I you know, if we don't take a stand, then who will? And why should we be treated this way in a society that has freedoms and rights for everyone?

Jen: 27:16

100%. So I am excited for this campaign. If anyone's listening, please, please, do this. I think it's so important. I am begging you to do this, because who else is going to tell your story?

Sweta: 27:32

No one, yeah, and there are a lot of people that can hear your story and feel impacted and you just get the strength from your story to keep going. It's almost like their survival guide.

Jen: 27:48

Absolutely, absolutely Okay. So is there any last bit of advice that you would want to give to someone listening?

Sweta: 27:57

So if there's someone listening to the story today, I encourage you to not give up on your journey. No matter what anyone says and no matter how you feel treated in a world that may not accept us for who we are with our conditions, there are always ways to go about things, and the one piece of advice I can give is question everything, because someone can give you advice. I mean doctors always gave me advice of, hey, you should take this prescription, but you can also have kidney disease. I mean, that's almost for me, that's like it almost sounds like a scam to my body. So I question everything and that's how I was able to get to the bottom of these conditions and eventually live my best life, where I don't have to feel like in this anxiety of, hey, should I leave my house or is something going to happen to me? And I think that was the anxiety of something coming up around my health was the biggest anxiety when it came to living my best life. So that's my advice.

Jen: 29:19

I think it's wonderful, I think it's very good advice and I hope people listen to that. Where can people find and follow you?

Sweta: 29:29

They can follow me. They can follow our company at Heal Veda. They can personally follow me at Sweata Speaks. I haven't personally started transitioning into the health sector. Previously, my background was in startups and entrepreneurship. I was working at various different incubators, and so that's why a lot of the followers I have there are mostly entrepreneurs. So when I talk about autoimmune conditions, they're like what is this about?

Jen: 30:04

Yeah, don't know this side of you.

Sweta: 30:07

But it's. I had to reinvent myself after I overcame these conditions and I saw the seriousness of them and I saw how people are treated with them. That's why I said, no, this is something I want to change.

Jen: 30:22

So that's great. Now I have asked you several questions. Is there anything we haven't covered that you think we need to talk about?

Sweta: 30:33

I think we covered the resources, we covered the story, we covered a lot of different points of conversation. I mean, I think one thing people don't often look at is something I learned from my own journey is that the physical manifestation of the condition is not as important as what's really going on at a deeper level inside the body, and understanding how that physical manifestation happened so oftentimes. You know, it took me back to a lot of my relationships. It took me back to a lot of my life experiences, and those long periods of living in unsubility throughout the life can really be the starting point of these conditions. But once I started to overcome them, I saw that, hey, yes, I would still get viruses, I would still get infections, but I was getting over these infections and viruses without them prolonging for like three to four weeks. You know, other things I started to notice was that, you know, I wasn't as prone because I would go to third world countries and I wouldn't get anything. You know, I personally studied the body in a way where I understood exactly what the body has been through in the lifetime, and being able to connect those dots and understand the manifestation of the disease is extremely important when trying to overcome it and in building the community.

Sweta: 32:27

This is one thing that I did see was a lot of people can look at their disease from the standpoint of wow. I just feel like this is such a curse because it's something that sets me back from the rest of the crowd. If I didn't have it, I would have such a better life. But you know, I started to see this in a way of what gifts has it given me? It's given me humility, it's given me discipline. It's given me, like, the need to have great health and the determination to want to do anything to have my health back, and this is something that most people would not have. So it really has built my character. It shaped me as a person and I think more people can benefit from it if they think of it from that standpoint.

Jen: 33:20

I couldn't agree with you more. I think if we focus and redirect our mind to thinking of all the things that we wouldn't have without going through what we have, it's astounding. It makes us more compassionate, more patient, more understanding with people, and if we were to just live a normal, healthy life, we wouldn't have that.

Sweta: 33:45

Exactly, and I saw a huge change in the behaviors as well. I was someone that with autoimmune, I was easily irritable, I had emotional outbursts. These are things that I saw change after overcoming the conditions, because and no one understood this about me they just classified me as, oh, she's weird, or she's strange, something wrong with her. But I said you know, it's not me, it's these conditions, the way that they can manifest in our body and cause so many different things to just change, including our own behavior.

Jen: 34:27

Yeah, it wreaks havoc throughout your body. Yeah, well, thank you for joining us and thank you for your time. And well, my Spoonie sisters, until next time, don't forget your spoon.