Transcript

Lauren: Okay, guys, thank you so much for joining us. I am here today with a friend who we've been waiting to have on the podcast for a while. Her name is Sharon Leggio Falchuk. She is a functional medicine health coach at Intended Wellness. And she's living with chronic Lyme. And she's going to talk to us all about what got her into health coaching and her chronic Lyme story. She's living in a flare at the moment, hopefully on the tail end of things. So, Sharon, thank you so much for joining us.

Sharon: Oh, thank you so much for having me. It's awesome. I've felt a connection with you from the beginning. So I appreciate this. 

Lauren: And we have our friend Nitika Chopra to thank for that, because she actually introduced us. We’re very lucky to have her in our lives. So we'd love to start at the top of the story here. And I would love it if you could share with our listeners when and how you first realized that you were sick, what you had going on, and what you've done to address that and begin treatment since then.

Sharon: Sure. It goes way back. I mean, I really didn't feel well from the time I was born. But when that's your experience in life, you don't realize that's not normal. It took me a long time to realize that wasn't normal. I always knew most of my flares were digestive in nature as a kid. I was always told that was just the ‘digestion’ in our family, like, “You just unfortunately got ‘the family stomach’." But I had other weird stuff too, like migraines when I was in second grade, and lots of weird aches and pains and neurological visual stuff. And so I just kind of went through childhood, was in and out of emergency rooms somewhat. And they always told my parents I must have caught a virus or a bug of some sort, as kids do. So it was just really passed off most of my life that I was sick. And especially once people realize that I was a very emotional person, like I was highly sensitive.

So then it always just sort of became that it was in my head and I was overreacting, maybe, to people being mean to me, or had a nervous stomach or whatever.

Lauren: So you were written off for your age and your gender?

Sharon: Yeah, like I was so cute. You know, the little pat on the head, like, okay, just go home and have some ginger ale and toast or whatever, you know, right?

Lauren: The ‘80s cure-all.

Sharon: Exactly! And toast …. now that I know that I'm gluten-sensitive, it was the worst advice ever! So it probably kept me in flare-ups longer, the advice I was given. But then, I went off to college and had major flares, and would go to either the campus medical center, or there was a hospital nearby. And they just started to be, like, okay, we're seeing the symptoms, so we're just going to treat the symptoms … “Oh, you have digestive issues; we’re putting you on an acid blocker.” “Oh, you have migraines; we’re gonna put you on a headache medication.” That's pretty much all I got. I did have a really good friend whose mother was a doctor. And she was, like, “All right, I'm just gonna have you come in for an appointment and just run everything.” She was, like, “I don't know why your inflammatory markers are super high.” 

Lauren: And so she had the wherewithal to test your inflammatory markers in the first place. 

Sharon: Exactly. 

Lauren: I mean, at that point, kind of revolutionary, probably.

Sharon: Yeah, it was like ’99, 2000. So yeah, that was kind of crazy. But again, kind of like, "I don't know why it’s so bad.” I had a third medication, which was Celebrex, to take the inflammation down. But at least it did sort of break the pattern. Another really interesting thing that happened during that time was, one of my many symptoms was ringing in the ears. And so my mom took me to an ear, nose and throat specialist. Again, they did all the testing, and they were, like, “Oh, your hearing's perfect. There's nothing wrong.” And I happened to just be walking out of the doctor's office that day with another nothing-wrong-with-you kind of result, and this nurse came up to me, and she was, like, “I'm sorry, do you have a minute?” And I was like, “Yeah …” And she’s, like, “I think he's available. There’s a doctor I would really like you to meet.” And I was, like, “Okay." So she went in, and sure enough, he was available. And she had me go in. He was an ear, nose and throat specialist. I gave him the high-level version of what I'd been experiencing — the headaches, the ringing in the ears, the weird stuff. And he laid me down, and he did cranial sacral therapy. 

Lauren: Thank God for this nurse. It's always the nurses, isn't it? She listened. And she said, check in with this guy. She had the insight or knowledge. She directed you the right way. Thank you, nurse.

Sharon: Exactly. And I literally was in a position of like, 20th doctor who says nothing's wrong with you — and leaving the appointment. And my mom was with me, and she had no idea what he was doing. I didn't know what he was doing. It was so weird. But when I sat up, it was like I had a new head on my shoulders. This was in the middle of Vermont, he was in central Vermont. So you definitely don't expect anything new or cutting-edge in Vermont, where I grew up. I was going to college about an hour and 15 minutes from there, in Burlington, Vermont. And so my mom, every week, would make the long drive up to get me and take me to these appointments. And it was the thing that moved the needle the most for me at that point. That's all I had to go on.

Lauren: Totally holistic. 

Sharon: Yeah, totally. It was literally just manipulation with this guy's two hands. So that was sort of my first kind of … oh, there's more to this. I never grew up thinking outside of trusting doctors. They're so better than you. They went to school for so many years.

They're the wise ones. They're geniuses.

Lauren: Common narrative that we hear.

Sharon: Yeah, it's totally modeled for us, and then we just kind of run with it ourselves usually. But then, I went through college and all that, and continued my rollercoaster of flares. I didn't know they were flares; I was just, like, this is just me. And then in 2008, I had my son. Thinking back on it, my pregnancy was very difficult. I had serious morning sickness; I had to go on short-term disability. I could not stop vomiting and I also bled when I wasn't supposed to, and I had all these kind of weird difficulties. And then he was born and had severe jaundice, like I did when I was born. And I was, like, oh, no, he's physically like me; that can't happen! Because I was born with digestive issues, basically. So yeah, that started the real journey of putting pieces together for him, that then started to put some pieces together for me. The doctors were like, no, nothing wrong with him. They did all the tests. 

Lauren: And you were smart enough to know that you're not going to be told the same thing twice. 

Sharon: Yeah. I wasn't going through this again. I just knew like, I don't care what I have to do. I'm not going through this again. So, when they told me that there's nothing wrong and nothing I should do. I'm like, Well, does it matter what I'm eating since I'm breastfeeding, and they’re, like, “That's not going to make a difference."

Lauren: Oh my God. 

Sharon: It was this old, old gastroenterologist, this old guy. And they were, like, “We tested him for a dairy allergy. It came back normal. There’s nothing  wrong.” I left there, and I’m, like, I'm just doing what my mother instinct tells me to do. So I cut out dairy, I cut out soy — and he finally started to gain weight. Because I had to take him every two days to be weighed, because he wouldn't gain weight. It was scary. It was really bad. Very stressful. I had serious postpartum anxiety. It was awful. And then I think because of the kind of the stressful new mom experience — you’re not getting sleep and all that — within a year-and-a-half, a little closer to two years after he was born, I just completely crashed. I also am almost 100% sure that I was reinfected in my yard; I got bitten again, by a tick.

Lauren: As an adult?

Sharon: As an adult. So I think my childhood issues with Lyme … I lived on Long Island and had ticks on us a lot. And we never knew that they carried disease back in the early ‘80s. And we had moved away from there by the time they figured it out. So nobody ever put those two things together, that I lived on Long Island …

Lauren: So you had these problems from birth? Do you think that was something that could have been passed to you from your mother, as well? 

Sharon: So I think there's two things, I think there's two possibilities. One, I was born with compromised digestion, which then affected my immune system to be able to handle the the bites. Or, that there is Lyme in my family line that was passed to me, and then I passed it to my son.

Because we know that the Lyme bacteria is ancient; they found The Iceman in the Italian Alps had the Lyme bacteria in him.

Lauren: What?! I had no idea about that.

Sharon: Yeah. Ötzi The Iceman. Actually we've gained a piece of really important piece of information about Lyme from him, because, though they don't think it caused his death … my son studied Ötzi this year, which was really interesting … I'm like, “Tell your teacher he had Lyme disease, and nobody wanted to hear it!” But yeah, it's not what killed him. He got attacked, they think, by somebody who was trying to steal his stuff. But they now understand that the Lyme bacteria can cause osteoporosis within months of being infected. So that's really what they learned, primarily from finding it in Ötzi, that the Lyme bacteria goes into the bone and what it does to the bone. So yeah, I think it's a really old, really old bacteria. Of course, things mutate and change over the years. We have stronger versions of it. We have different tick-borne illnesses than maybe we had before. But I think the problem is … I think a lot of people probably carry the bacteria. And then it's all about environment and things that happen along the way. Maybe your body loses having the upper hand over it. We have so many assaults on our system now, from the toxic foods to the constant EMFs, to all those things, that the scale is now tipped out of balance, and the Lyme gets a chance to kind of do its thing. And then we're getting reinfected. And getting an extraneous illness of some sort with it doesn’t help.

Lauren: Have you had your son tested for Lyme since all his stuff started?

Sharon: I haven’t. That was one of the biggest decisions I made. I was really tempted because, again, he had not just the severe jaundice, he had nursing issues, he had weird neurological stuff; he couldn't stand loud noises or bright lights. There's definitely stuff that pointed to it. And I had talked to my Lyme doctor. I was, like, “Okay, if I found out he does have it, what would I do?” And her approach was heavy duty antibiotics for long periods of time. It just didn't sit right with me. And I was, like … what would I do differently if I knew he had Lyme? Well, one, it would cause me severe angst, it would cause me so much … 

Lauren: And is it worth the anxiety. 

Sharon: Yeah, that it would cause me so much pain. And as I talked to you before, I think a lot of us have Lyme. I think that for me … whether I know if I'll ever be cured of it or not, I may not ever know that. It's about living the healthiest life I can so that it's not a problem for me. And so I decided for my son’s sake, I need to do the same for him. So he's gluten-free. He's mostly dairy-free.

Lauren: And these are easy things to do. They're approachable things to do in the world we live in now. And it's about as you say, that homeostasis. Which is what many LLMDs are working to get their patients toward, not necessarily to cure Lyme. I don't know if there's really a “cure”. But that if we can get the body to someplace where there's more balance, and you can live comfortably and happily.

Sharon: Yeah, it took a lot of mindset work to get to that point, because it really scared me for a long time. And then I was, like, you know what, I have this information. And if God forbid, at some point, he starts to show that he's really sick in some way, then I can go to that first. But if he's developing … in school and physically in every other way, he's developed fine. Except for vaccine reactions, unfortunately. So I just have sort of kept it in my back pocket as like a data point, but I'm not gonna let it rule our lives or have me make a decision to put him on some sort of protocol that could be really difficult for him. So that's just where I've landed on it for now. But it's always something that I keep an open mind about.

Lauren: Well, that's really important. So I'm wondering at what point you actually got your Lyme diagnosis, and what that was like for you emotionally having a name to put on this thing? I mean, was that a positive experience? Or was it actually one that you were, like, Oh, God, what do we do now?

Sharon: It was a mix. I will never forget it.

So again, it was 2011, I had a small toddler at home, and I couldn't get out of bed and I was going down the drain really fast.

I couldn't digest my food. I lost 25 pounds in a month. And my heart rate was always super high. I had no control over my body; it was just going down fast. I'm here in the Boston area. I went to more than 15 doctors here, every specialist. Two rheumatologists and two endocrinologists, and all of them were, like, “There’s nothing wrong with you.”

Lauren: There’s nothing wrong with you, even though you feel like shit. Congratulations. Thanks, guys.

Sharon: I'm like, this is just a fun pastime for me, going to the doctor. It's just a fun pastime I've picked up. Yeah, I got the whole “You know, you’re a new mom who's just tired.”

Lauren: Great. Oh, that's really wonderful. So then they were putting you off because you're a mother.

Sharon: Yeah. You know, the whole “You look fine” thing. Which is awesome. And so there were actually two doctors out of the 15 … women, of course, who said, “I believe you're sick." One was an ear, nose and throat doctor, and the other was an endocrinologist. And they were, like, "I believe you're sick. I just don't have the tools to figure out what it is.” 

Lauren: At least someone was able to say it. 

Sharon: Right! And I was, like, “Well, that's all I want to hear.” All I want to hear from someone is … I believe you're sick. I don't know why. You know, you don't have to have all the answers. Just don't pass me off and tell me I'm crazy. Because all of them were trying to give me anxiety meds and send me to a psychiatrist. Which I did, because I was so desperate. The anxiety medicine, unfortunately, did nothing for me. Going to therapy was a helpful thing. I didn't go to a psychiatrist in the end, because she just kept trying to put me on psych meds. So I kind of was like, okay, I'm not gonna get an answer. I do have to share my experience with an infectious disease doctor, if it's okay … 

Lauren: Yeah!

Sharon:  Just for anyone who is going through this experience right now, to just not put up with this sort of treatment. The last doctor I saw was an infectious disease doctor. I remember going in there, and it's in the bowels of the hospital; it's down in the basement. They keep all the infectious people far away from everyone else. It's like the dregs, it's the basement. So I'm in there, and I'm looking around, and it's like this super dreary, awful office; it's like a holding pen. They call me in, and they were like, “You're so lucky, you’re getting this fellow, whatever, he’s really great.” So he comes in, and he looks me over and all that, half listening. And then he’s, like, “You don't seem sick. The only thing I can think of that sort of moves around like that in the body is HIV.”

Lauren: Oh, thank you for freaking me out about that one!

Sharon: He’s, like, “So we're gonna test you. But that's the one thing that sounds like it could be.” And I'm just, like, HIV?? How do I have HIV?? I'm wracking my brain. Then I’m, like, my husband! I'm calling him immediately when I get out of here. I'm freaking out, you know. I start crying. And so he goes to his attending — that’s a woman — they come in and they literally start interrogating me.

“So maybe there's a night you don't remember, in college? You’ve never used intravenous drugs or slept around?”

Lauren: So also, we’re now judging your character!

Sharon: Yeah! I just left there. Literally, I was shaking in the car. I called my husband; I’m, like, “Do you need to tell me something? What have you been doing?” I was totally freaked out.

Lauren: It’s unacceptable, isn’t.

Sharon: It’s abuse, it's straight-up abuse. And I know that I'm not the only person.

Lauren: Even if you had HIV …

Sharon: No matter what, even if that was the news they were gonna deliver to me that day, you don't do it in that manner. I just want people to remember not to put up with that.

Lauren: But also to understand that the symptoms of Lyme disease … I mean, it's known as The Great Imitator. And it sounds like one of the diagnoses that it could very easily overlap with is HIV. Because this is something that is attacking your immune system and manifests in numerous ways. 

Sharon: Yeah, it's a multi-systemic thing. One day, you maybe have blepharitis in your eye, some infection in your eye, and then the next day, you have an infected toe. That’s the way Lyme works, and it's the way HIV works. And that's the reason … when I thought I had candida overgrowth, my father-in-law, who's a gastroenterologist, was, like, “No, only cancer patients and people with HIV get candida overgrowth.” And I was, like, “Well, I'm pretty sure I have it.” So yeah, there are just all these misconceptions about Lyme. Like you said, The Great Imitator. Sorry about the roundabout way to get back … 

Lauren: Oh, gosh, don't apologize. It's horrible that you had to go through that. And I think it's important that we hear these stories, because that's the whole point, right? We need to understand that this happened a decade ago. And what's happening now, in many cases, is just as bad. And unless we're talking about what's actually happening, we're never going to change it. 

Sharon: Right. We need to be vocal about it. And through my work with my clients, I'm sadly not the only one who's been treated that way. You know, it's a common story. So, I got all that behind me, I went home, and I’m, like … listen, nobody's obviously going to help me, I need to help myself. So I did kind of self-diagnose myself with candida overgrowth, and went on a candida diet, anti-Candida diet, which stopped the bleeding at least. Finally I could digest my food, get out of bed, all of that. And in the meantime, I found a doctor who, of course, was off the grid and didn't take insurance. So all that was out-of-pocket. But she's the one who was, like, "Can you take this questionnaire, the Lyme questionnaire?” And I was like, “Sure.” But I didn’t think I had Lyme disease. I took the questionnaire, and as I'm going through it, I’m, like, why am I checking all these boxes? This is weird. And then sure enough, she had the blood work done, and it came back positive for Lyme. All of my co-infection tests came back negative, but that was kind of early days for co-infection tests. And she felt, based on my symptoms, that I probably had Bartonella and ehrlichiosis.

Lauren: Let me ask, was this the western blot, or an IGeneX?

Sharon: IGeneX.

Lauren: So there's another thing, the diagnostic standards, which are not standardized here. We go by the CDC's guidelines and that's only with Lyme when you catch it, right. There’s no indication about chronic Lyme there. But also, as you've already mentioned, the testing diagnostics are not up to par.

Sharon: No. And sadly, we're seeing that now with COVID, too. And I think with COVID long haulers, we're gonna see that people … we don't know why you're still sick all these years later, but that these things are real.

And we may not have tests to prove it — but we don't need a damn test to prove it. We just need to believe that people don't feel well.

You know what I mean? Come on.

Lauren: And we also need to standardize what these treatments are going to look like then, too. Whether it's going to have to be a detox pathway for one person, or a change in lifestyle for another — that everyone's going to be individual.

Sharon: Exactly! It's not going to be the same. Just like people's symptoms aren't the same. You can have the same exact thing, and your symptoms are going to be totally different. We need to take a person-by-person approach, just like you're saying.

Lauren: So you got your Lyme diagnosis. And what was the emotional reaction?

Sharon: I'll never forget it. My husband was traveling in London for work. So I was home alone with my 2-year-old, and I was napping when he napped because my energy … I had zero. And here I am by myself, the phone rings and I pick it up … “It’s your doctor. You tested positive for Lyme.” My heart sank into my stomach. It was totally that mixed bag of … see, I am sick, and I finally have an answer. And, oh my God, what does this mean? 

Lauren: And what has it meant? What has that looked like since that day?

Sharon: Well, it was scary as hell at first. The first thing I would tell people, when you get a diagnosis, is to not go online and start Googling things. Number one. Because that further traumatized my brain, and I feel like set me back a lot. As soon as I started to read a message board, and people were sharing their worst case … again, I could feel that fight-or-flight sickness in my stomach, and I was just, like, I can't look at this. So it's been a rough ride. I got the diagnosis. And then I had my first appointment with that doctor, in person. And when I went, since it's sort of what she does, she gave me the rundown in not a very feeling way. It was, like, “Yeah, so you have Lyme. It looks like you have an old infection, which probably explains your childhood stuff. And now you have a new infection. So you’re probably re-infected; that's what that that scab was on the back of your neck.” Probably in the fall when I had raked leaves, and we were jumping in them — big mistake, I had no idea, and had this scab at the back of my head that would just bleed and bleed. I never had my husband look at it. I just thought it was a pimple or something. So it all started to add up. And then I got a speckle rash on the back of my head, too. So I was, like, okay, I'm making sense of it. And she was, like, “Oh, and by the way, you probably gave it to your son, since you had it before.” 

Lauren: So the anxiety was through the roof. 

Sharon: Oh, and I was there by myself. And I was, like, tell me anything about myself. But tell me anything about my child … I don't even remember driving home that day. I had to keep pulling over because I couldn't breathe and I couldn't see, because I was crying so hard. And I’m calling everybody to tell them. Just getting a new diagnosis … literally it’s like the floor just drops out from you. And then to think that could be my son's fate, too. I was just, like, no, this is the worst possible news you could get — you know that you have an illness, and possibly your child has it, too?

Lauren: In many ways, it's almost like that the HIV scare earlier. That might have been more manageable.

Sharon: There's meds for that. I mean, that's not trying to be. That's what he told me that day, when I left the office; he was, like, “You know, my HIV patients live really full lives.” And I’m, like great, but you know, that's not the case for Lyme. Unfortunately, it's just not. We're not there. We're not there with that, unfortunately. So she’s, like, “You'll start these three antibiotics on Monday, or whatever. So I got the scripts and picked them up. And I'm like, okay, great. This is the beginning of me feeling better. And within five days, I was head-to-toe hives, and my mouth was swelling shut, and my ears were swollen. And I call her, and she’s, like, “You need to get off those medications immediately, and start taking Benadryl. And if the reaction doesn't go down within 48 hours, you have to come in and get steroids, which we don't want to do, because that makes Lyme worse.” Again, the stress feeding. Keep checking the welts, keep checking everything, because if it doesn't go away in 48 hours, I have to do a thing that's going to make things worse. You know what I mean? So I remember asking her during that phone call, “What do I do if I can't tolerate the antibiotics?” Because I've always been sensitive to pharmaceuticals. I've never been able to do the pharmaceutical route for anything. And she's like, “Well, we’re in real trouble then.”

Lauren: Great. Thank you for that. And this is an LLMD?

Sharon: Her path is very one kind. It's the antibiotics basically. She does some supportive stuff.

Lauren: Well, then I wouldn't necessarily call her an LLMD, but I suppose back at that time, a decade ago, she was.

Sharon: Yeah. So I was, like, oh my God.

The worst thing was thinking that there was no way, because at that point, I didn't know about any alternatives.

I thought that was it. I still kept on the diet and all that, but at probably my lowest hope point, I got a phone call from my cousin in Vermont. Her husband is in the Native American drumming circle scene and he’s, like, “There's someone who comes to the circle; he's an herbalist, and he and his wife have Lyme. He knows how to treat Lyme with herbs. And he lives 15 minutes away from you.”

Lauren: Perfect. Yeah. And at that point, you’re, like, I'll give anything a try.

Sharon: Yeah. If they had told me to drink Windex and stand on my head in the corner, I would have done it at that point, you know? So I made an appointment with him. And I went, and we talked. He got it at such a level, because he and his wife had lived it. Their dog even had Lyme disease, chronic Lyme. And so I started the treatment with him. It's a Buhner-based protocol of herbs I do. 

Lauren: Does that mean, Buhner-based? 

Sharon: Oh, yes. So Stephen Harrod Buhner is an herbalist who came up with a specific herbal Lyme protocol. It's like a road map for patients. Some of it, you do one treatment during two phases of the moon and another treatment during the other two phases. So it's very tied into how the Lyme behaves based on what the cycle of the moon is.

Lauren: Wow. Almost spiritual in approach.

Sharon: Yeah. I don't know if you've noticed this with yourself, but full moon, sometimes my symptoms are worse. And, again, I see that in two ways. That parasites and animals and things are more active during a full moon. And also the gravitational pull on your body — it’s a bigger stress during the full moon. There's a lot of wisdom in that sort of thinking. So I did that for two-and-a-half years, continued on my diet, got really heavy into … I have absolutely an out-of-this-world acupuncturist, who I trust beyond, just beyond; he's gotten me through so many times where I’m, like, “I think I need to go to the hospital.” And he’s, like, “No, your body's got it.” Just given me that confidence and explained to me what's going on in my body … like, “Oh, your gallbladder is burdened.” We all deserve to have this information … that this is what's happening with you … okay, then I'm going to eat this way. Or I'm going to do these pressure points or whatever. We all deserve to have this information.

Lauren: And that kind of holistic approach, too, there's no harm, usually in working with pressure points, or craniosacral work, or that kind of thing. So why it's not incorporated more into our traditional Western medical approaches is sort of, like … why not?

Sharon: Yeah, and I also have to make a stand for why is it also screened out of our Google searches and things? Where it’s, like, oh, what can I do for a home remedy for pain, or whatever? And now I have to dig. I have my resources, thankfully. But back in 2011, if I put something like that in, Dr. Axe would come up, or Dr. Aviva Romm. And now, from what I understand, Google has really tried to make it so people can't have dangerous health …

Lauren: It’s a fascinating one, isn't it, because there has been such a spread of misinformation in the last several years in particular, and that's been fueled by social media and a lack of responsibility there. The backlash, the response to it, has been … let’s just silence everyone in the wellness world, rather than let's silence the people who are actually touting non evidence-based. If we focused on the people who are touting information that is indeed evidence-based, like your Aviva Romms and your Dr. Axes, there’s merit and a lot of offer. So that's really frustrating, I agree.

Sharon: Yeah, because I think that there's so much damaging information on the Internet — like how to build a bomb, and things like that. And we can have access to that. But when it comes to our own body, if I look at someone who says, for example … when you have coronavirus, you should drink Lysol or something, I know in my intuition for myself that that's not a good idea. But I also think … it's my body and if someone says, no, but you know what?  Elderberry. And I decided …you know what, I want to try elderberry. Isn't that my prerogative?

Lauren: Well, there’s a huge difference between elderberry and Lysol.

Sharon: Yeah! But what I'm saying is, it's weird to me the things that media is allowed to say to us, and then these other things are more dangerous. I don't know, it's weird.

Lauren: It’s a weird double standard. And I think part of that is because actually some of this holistic information threatens big money and Big Pharma. 

Sharon: That’s what I think it comes down to, and why it pisses me off so bad, because who doesn't want us to help ourselves? Why is that a thing? It used to be common in tribes, in villages … where my family came from in Sicily, the mother of the family had healing information. You knew you picked the rosemary at a certain time, and that that was used for certain things. We should all have that. We all have the right to that information to help ourselves and our families. Then you elevate it to a doctor when it gets beyond — like the common cold, or what you can handle. But we deserve to have some power over that sort of thing.

Lauren: Yeah, absolutely. Well, that autonomy is so important. Especially to patients like us who have had our autonomy stripped of us when our bodies completely rebelled, right. We have no control over our bodies, so our autonomy goes out the window. And then we have people telling us it's all in our heads. We all have to scrape and scratch to get back to a place where we are able to embrace bodily autonomy. Let alone be able to continue to practice what is working for us or not. So, you've gone through this whole journey, and it sounds like you've reached points of homeostasis. Obviously, you're in a flare right now, which you shared with me before we started this interview. But one of the things we talked about before we started recording as well, was the idea that at least when we flare, now, nothing's as bad as when you're sick. At first when you have no answers. At least when you flare now, rationally speaking, here are the methods I can turn to that helped me heal. Or I know that it will end, that there is an endpoint in sight. But you mentioned, especially when you were getting these diagnoses before Lyme, calling people and getting support. Did you have a support network when you were going through all of this? Did you have any people who stepped up as advocates for you? Or is that something that you had to learn for yourself?

Sharon: That's an awesome question. Unfortunately, it was something I had to learn for myself. I grew up as someone who really didn’t … I was not an outspoken person, I did not have a voice. That’s just how it was, that was what was role modeled for me; you just don't make waves or draw attention to yourself. So then to be in a position where my life depended on me being a squeaky wheel, which was so uncomfortable for me … don't be a difficult person, don't push back, that's rude.

But I realized pretty quickly … nobody's gonna do it for me. Actually, quite the opposite. People are trying to quiet my screams for needing help.

Thankfully, one of the real kind of lighthouses for me was, I did, along the way, get some numbers of people who had been through a Lyme journey, and were doing better. Those were everything to me. It’s almost that unspoken thing of … yep, I know what it's like to say goodbye to your child when you put them to bed at night, because you don't know if you're gonna see them the next day. This one woman was, like, “You will get through it.” She just kept saying to me,”You will get better. I really believe you will get better.”

Lauren: This is addressing what you mentioned earlier about there having to be mindset shifts, right. That is really directly related to a decision that you make to survive. And I'm sure that there are people who get beaten down so many times that they no longer prioritize that decision. But it sounds like that was a decision that you made, and had to make, in order to get where you are.

Sharon: Yeah, it's weird. People would laugh to hear me say that I was quiet!

Lauren: Well, I know you now, and I get it. I'm also like, Sharon? Just sitting there and taking it?

Sharon: No, that is so not gonna happen ever again! And especially when I became a mom. But yeah, it’s weird to think back on. There was something inside of me, as quiet as I was. I think it's from my dad's side, really, because my mom is more of the quiet person and my dad is an Italian and he just doesn't take crap from people. And so that side of me really had a chance to come out. He's also extremely stubborn, so when he puts his mind to something, he's gonna do it. I'm so grateful for that, because as much as people told me … “You should do it this,” Or, “You should do it this way.”  That's anther thing about having an illness, everyone has their advice, right? So many people came to me and were, like, "Sharon, if you don't do the antibiotics, you're gonna die." And I was, like, “You don't understand, I can't do the antibiotics. So you telling me that I have to is really cruel, because I can’t.”  And, “Well, you're going to end up at least in a wheelchair or something.” Unfortunately, a part of your brain holds on to that. That's why I'm telling people out there, be careful what you say to other people, because that'll stick — because our brain is wired to save us, to protect us. It's going to hold on to the scary information to prevent it from happening. So just be very careful with your words, with people, when you are on the other side, and you're now helping someone in a new position of diagnosis, or early in their journey. Because it makes such a difference. But yeah, I'd seen people along the way, in my own family, who didn't have that sureness and stubbornness, that ‘I'm going to figure this out no matter what, and I'm going to get help, no matter what.’ They kind of surrendered to a life of a lot of illness and a lot of difficulty. And I just decided … I just feel blessed, I guess, that I have that determination. Because I know it's not possible for everybody. And so I look at people, whether I'm health coaching them, or it's in a personal respect, who can't do it, and my heart hurts for those people. Because I know they would if they could. Don’t we all believe in our wellness? And wouldn't we all never give up if we could? There's so many factors that impact that. And it's not just financial; sometimes financial has nothing to do with it. Although unfortunately, it has a lot to do with it for many. A lot of it is just really caring enough about yourself and having a purpose and a sense of meaning in life.

Lauren: Do you think that your illness forced you to face that purpose? Like, it was something that prior to that you'd sort of meandered with, and then you got sick, and you were, like, if I don't recognize my self-worth now, we're not going to survive this.

Sharon: Yeah, for sure. And it also gave me a sense of purpose, because I wasn't in love with my jobs. I liked what I did, because it was people-oriented. I was a recruiter. But it wasn't my passion. And then my identity became being a mom, and I was so obsessed and passionate about that. But I knew that wasn't gonna last forever. He's 12 now, so he's starting to sort of move away from needing that so much. And I’m, like, my being a health coach gives me purpose every day. I had to recognize my own self-worth. And now I can see other people's self-worth so much better. Everything I've done on this journey to this point has made me not just a better person, in my personal life, but so much better at what I do.

Lauren: Which we're gonna get into. But before we do, can you also talk us through what a typical day is like for you? How are you now balancing the demands of work and life as you're managing things like the flare you're in right now? The potential symptoms that might crop up for you. Have you had to redesign your life around your illness?

Sharon: Yeah, I take a big sigh there, because the relief is, I always tried to be someone I wasn't before the illness. I have never been a morning person, I have never had a ton of energy; my energy has always come in fits and starts. So, I’ve got to take advantage of my energy, and then I need to get myself down time.

But I always just tried to plow through, and pretend that that wasn't who I was. Because it was shameful for me.

I was, like, how am I related to all these super hard workers in life, and people who live their life in a certain way, and I couldn't be more different. And so I tried to not be that way. And then I kept paying for it. It's like you push too hard, and then suffer and then recover. Suffer, recover, then you need more time to get back on your feet to be able to do it again. I still get in those cycles, where I’m, like … I'll just kind of look over my shoulder. I'll just do one more thing.

Lauren: I can do it, right? My body can do this!

Sharon: I’ll take on one more thing. And it's always one more thing, and then you’re, like, yep, sorry, I can't do anything for two weeks now. You know what I mean?

Lauren: I think that's also partially because there's something about overachievers and recovering type A perfectionist personalities, that it seems to be us who are getting hit with chronic illnesses. And whether we're the canaries in the coal mine, or there needs to be a rebalancing of culture … that becomes the question, right? It sounds like you've responded to culture with your changing.

Sharon: Yeah, I mean, I'm fortunate. Again, I know that's not realistic for everybody. I'm married and my husband works. And because I have my own health coaching thing, I can make my own hours. I don't see anyone before 10am. Whatever that happens to be that works for me is a luxury that I know most people don't have. So I feel really lucky for that. Because otherwise, the way I was living my life before, it was keeping me sicker, I have to admit. Trying to fit into this society as a highly sensitive person. I think what you said about type A is right. You take the dangerous combination of, say, a perfectionist who's highly sensitive, you’re kind of like a …

Lauren: … ticking time bomb. 

Sharon: Yeah, it's really not a good combo. And I wouldn't say that in every area of my life, I was a perfectionist. I was a procrastinator or perfectionist; I'm sort of an all-or-nothing person. So again, it's that cycle of extremes. And a lot of my healing journey has been about finding the middle place for everything, finding balance, where I'm not gonna, like I said, push myself to exhaustion, and then not do anything. There's a lot of shame at the lack of being able to manage yourself, executive functioning type challenges. 

Lauren: Well, and I wonder about … to go back to what you were talking about earlier with regard to trauma … that any of the shame that you're feeling is more related to other people's judgement of you, or what you've been socialized to believe is “normal” executive function. And this expectation that everyone should be on the same line. Rather than this idea of there being variation in personalities and abilities. We think of the two dichotomies of able-bodied and disabled. But there's never any space for anything in between. Which is exactly what we explore on the show. You’ve had to challenge yourself to think outside of that. But now, it's the work of the rest of our society to do that, isn't it. You've told us about a number of instances when you had to justify the fact that you were ill to people who didn't believe you. Do you think, within the healthcare system, especially in regard to the way that you present … you're walking into a hospital, you’re a white, female-presenting woman walking into these treatment rooms. Do you think your circumstances might have been different if you'd been male? Or if you'd been a person of color, or trans? Or that any other kind of presenting identity might have slowed or quickened your diagnosis?

Sharon: That’s an interesting question that I think about a lot.  I think, for sure, someone who was a person of color, or transgender, would have probably been even worse treated at, say, that infectious disease appointment. That was atrocious enough for me. I can only imagine how, probably, that white male doctor would have treated others. So I'm sure I had it better than some. I don't know if maybe being a male would have helped me some in that specific situation, especially. I hear of plenty of males, in the Lyme community, who are treated pretty similarly to how I've been treated. But then again, with a lot of these illnesses, way more women have them. So that's the tricky thing. 

Lauren: What do you think that’s about? Is that because more women are coming forward? Or is it because more women are more susceptible? Because we don't know.

Sharon: Yeah, I think it's a combination of things. I think women tend to talk more about how they feel, whereas men tend to push through it more or just try to “man up”. But I do think that women … again, I think there's definitely a hormonal role in there. Our hormones really do fluctuate. They fluctuate all month. Everyone's hormones fluctuate all the time, but the way in which our hormones affect our immune system and affect the harmony of our ability to kind of …

Lauren: … fit within the rubric of society.

Sharon: Yeah, that too!  I think that's a big part of it. I was kind of hesitating to say, but I feel like we are more feeling people … and I know again, that's sort of a stereotype, but I feel like we take on more of the stress and the the suffering of the world, I would say.

Lauren: I think that's the mothering/nurturing side.

Sharon: Yeah.

Again, that doesn't sound so good from, I guess, a feminist perspective. But I think it's true. I think that we feel a lot more.

That's why I've gotten into mind/body medicine. I think our emotions, our past traumas … I think all of that stuff lays the groundwork for how healthy we're going to be later in life.

Lauren: Yeah, absolutely. So for these people who are experiencing inequity in the healthcare system, including you … would you say that racial inequity, gender inequity, sexual identity inequity in the healthcare system is its own public health crisis, aside from the Lyme crisis?

Sharon: Are you kidding? Absolutely. It's an epidemic, I think.

Lauren: It's frustrating, isn't it. Because you're already dealing with an epidemic when it comes to something like chronic Lyme. But then you've got the extra epidemic layer of your identity. Which anyone who's entering the healthcare system with its biases is going to encounter, but it makes it even harder to get that diagnosis and to get that treatment. 

Sharon: Exactly. And I feel like, again, I've tried really hard to see the silver lining of the epidemic, and I am remaining hopeful that one of them will be that we will realize exactly how bad we've been treating patients of all walks of life, but especially the underserved populations and minorities …

Lauren: … and those most marginalized. 

Sharon: Yeah. You look at the numbers of people who are dying, and it can't get more obvious. I mean, you can't ignore that. For me, the real awareness started to come when I discovered the shocking percentages of women of color who die after childbirth.

Lauren: I was gonna mention that, because that's where it's also very obvious.

Sharon: Yeah. When I found out, I was so mad, I wanted to scream; I was so mad and upset. How can this really be? I think so many of us, we’re just so clueless. We live in our own little white world, or whatever. And you don't even give some of these things a thought until … for me, going into the health coaching world, where I was now aware of these statistics and the population at large, instead of on a smaller scale. And I'm just appalled. That should not be. For news stories like that to come out, it took someone like Venus Williams to almost die after childbirth, to bring this to light. 

Lauren: Literally the world's greatest athlete, we have to watch her almost die.

Sharon: Almost die, after having a natural experience of having a child. They should know you keep an eye on a mom in a certain way. Especially women of color tend to have, I think more, from what I understand, maybe more of these postpartum issues. 

Lauren: Well, that's also because they're not being taken seriously by their doctors. I'm wondering, then, how you got into health coaching? Because you're now an active health coach and functional medicine forward? How did you arrive at that place? Did that come out of your experience directly? That you met functional medicine, and it was part of your inner workings to find homeostasis? And now you want to offer that to other people? What does that look like for you in practice?

Sharon: Exactly. I couldn't have said it better. Along the way on my own healing journey, everybody was aware because I became such a mouthpiece about not being taken seriously, and how I had to go an alternative route. I found, like you said, an Lyme-literate doctor. But then even from that had to deviate. I really had to forge my own path, which was so out of character for me at that point, that then I just wanted to tell everybody.

Anybody who came within my range. I was, like, “Do you know about Lyme disease?”

Lauren: Let me tell you!

Sharon: It's weird because part of my journey was completely flipping my house. I ripped out anything toxic, like carpeting; I just went crazy to try to make my home environment as conducive to me healing as possible. And so some of that was having contractors come in. I had a plumber come in, I had literally all these different people come in. I had someone come clean the vents. 

Lauren: Which everyone should do regularly.

Sharon:  Please! And I had no idea. 

Lauren: And it’s not hard to do. 

Sharon: Once every year or two, have these people come blow out your vents. Do it when you check your fire alarm batteries. I mean, you have to do it. And so I had all these different people coming into my house, and every single person, I’m, like, “Just so you know, I'm doing this because I have Lyme disease,” and gave them my little spiel. Every single practitioner or every single worker who came into my house was, like, “Oh, my mom has Lyme disease.” “Oh, my sister has Lyme disease." “Well, my wife has Lyme disease.” 

Lauren: This is back near Boston. So you're still on the East Coast, on the eastern seaboard?

Sharon: Yeah, right outside of Boston. It's a real problem here. I was new to living here. I didn't realize what a problem it was. And so to talk to literally every single person who had come to do work in my house that they had some direct connection to Lyme disease, I was, like, okay, this is a much bigger problem than I had realized. And people just started calling me. They were, like, “Well, can I have your phone number?” And so people were calling me and I was happy to give them hope and tell them about my story. But like you touched on so importantly, what you need to do is not necessarily what I did, and I'm not qualified in any way, shape, or form to help you do that. I can share my story. And that's about it. And so then I realized …

Lauren: You weren't qualified then!

Sharon: Right. But I realized, wow, if I'm getting a phone call sometimes every day, or at least a couple of times a week like this, there's a big need. And honestly, in the summer of 2011, when I was bedridden and I could hear my son and husband playing outside in the yard, and I couldn't go play with them, I said to God, I just said a prayer … “If you get me through this, I promise I will help people. I promise, promise that I will find a way.”

Lauren: Which is another common narrative in this community. I love it. We find ways to get well, and we want to pay it forward. Which is so beautiful.

Sharon: It’s beauty for ashes; it's finding a meaning and it's not letting your suffering be for nothing.

I think that's what we all want to do, to know that we didn't go through that for no reason.

So people started contacting me, and I was, like, I'm not qualified. But you know what, I'm gonna start. I'm always been a Why Person; I want to know all the answers. That's why, originally, I was going to become a journalist. So I already had sort of the investigative personality … that's what got me through my situation. And so I was, like … now I just need to find how to channel that. I'd looked at a bunch of different programs, and I'd gotten an email about the functional medicine.

Lauren: I love this, because I did not know that one could train as a health coach in functional medicine — until I met you. And I almost feel like it's because I met you that I've started training myself.

Sharon: Yeah, that’s awesome.

Lauren: Because you taught me about functional medicine, health coaching … I was like, what? And I looked it up and I was, like, this exists? Oh, look, it's the answer to all the things, all the conversations, all the ways in which we want to be able to serve this community. And it's right there in front of us. And I had no idea until you and I met I know! Fascinating. 

Sharon: Aww, I love that. 

Lauren: Yeah, and it's amazing work. 

Sharon: Everybody needs to know about it, whether you want to do it yourself, or you just need to find somebody on the health coaching side to help you.

Because I feel like we all need a health coach at this point.

I had a health coach, and she had had Lyme. So it was like a buddy that I could check in with once a week, who not just understood my situation … because sometimes getting advice from people who have no idea, who've never been in your shoes, you're kind of, like, yeah, that's cute. It's got way more street cred when it comes from someone who's actually been there. 

Lauren: Would you say that the majority of your clients are also people living with chronic Lyme, or do you treat people across the board? 

Sharon: I have a whole range of things, but I get a lot of Lyme people, and the majority of people I work with are highly sensitive or consider themselves highly sensitive. That's sort of my thing. Because I know it's not just about getting a diagnosis, and then going the treatment route. When you're highly sensitive, you're dodging a ton of bullets. You can take a supplement, and then you're recovering from a reaction to that for a week. And so many alternative practitioners still don't get that. They’re, like, “Here, you're going to leave my office with this cute little canvas bag of 25 supplements, go home …”

Lauren: Which cost you $500.

Sharon: Yeah, that's bankrupted you. Go home, here's the to-do list. And then they all end up in your graveyard; you've taken two of each thing. And you’re, like, I can't do anything with this, and I'm out $500. And now I'm worse than back at square one, because now I'm recovering from the reaction from all those things. So that's why I specialize, really, in helping those people in getting back in tune with their intuition. We plan for their doctor appointments ahead of time. Okay, what are you going in for? What they’re really wanting to get from this appointment. And what are your hard-knows? You can get talked into stuff really easily. You can go in being, like, I'm not buying, I'm not buying five supplements. Again, I'm just not doing it. And then you walk out and you’re, like, why did I just do that? It’s buyer's remorse.

Lauren: And you can’t return supplements, either. Because once you crack the seal, forget it.

Sharon: That’s it. And some of them each are like $50 or $100. It's no joke. I know so many people who go down that road. So yeah, it's a lot of Lyme people, a lot of highly sensitive people, anyone really. But I feel like once I decided on the functional medicine route … because the reason I went that way is because that's what helped me heal personally. I had kind of taken that on naturally on my own. My intuition said, okay, you need to change your diet. The five pillars of functional medicine were the things that I depended on, which were nutrition and sleep habits and movement. Not exercise; I could not exercise, that is for damn sure. I still am not at a point where I can full-out exercise. 

Lauren: And also, if you walk every day, that's enough, nobody needs to do HIIT workout.

Sharon: Thank you! Thank you. Oh, and I do want to mention to women … you have to be mindful of where you're at in your cycle, about what kind of level of exercise. We’ve just got it all wrong.

For women, nobody's taking into account that each week, we're a little bit different because of our hormones.

We need to be really adjusting our foods, our movement, all that based on that information. What I'm doing with people is bringing them back home to themselves. Because you can't continue to go outside of yourself looking for information and looking for the answers. To a certain degree, yes, but not 100%. You have to be tuned into the messages your body is giving you real time, all the time. Sometimes we need to test for certain things, but a lot of the time, your body will tell you this is not working.

Lauren: So it sounds like your role is not only encouraging what holistic methods might be complementary to someone's treatment, but also from a practical point-of-view, pre-planning for these doctor's appointments, figuring out which doctors we need to see. But then also from an emotional point-of-view, being able to provide that very vital support. And, as you say, help people get back to themselves.

Sharon: That's why I really have focused in on mind/body medicine. Because, again, I feel like it complements the fact that the real epidemic in our society is two things … it's trauma, and it's loneliness. It's that lack of connection. And when you're traumatized, it doesn't matter if you're in a room of people sometimes, you can't connect. And now we're at, I would say, a real huge, high point of loneliness. It’s just been exacerbated because of the  epidemic… pandemic.

Lauren: Well, the pandemic is an epidemic. We’re gonna have long-COVID. That’s correct, actually. So it's not actually a mistake. It's actually your intuition seeing where this is going.

Sharon: We already had a huge mental health problem in our society. And that's another reason why I got trained during this time, because I was, like, this is needed now more than ever. These techniques that people can carry with them anywhere, to navigate the stresses of life. Because you can't avoid them. They're going to keep happening, obviously. We couldn't have predicted this big one this last year. The Presidential situation was a big stress on people. There's things that we're just not going to be able to control, and we need to be able to change the way that our bodies react to them. And it very much feeds illness. We look at the Adverse Childhood Experiences (ACEs) studies that show that adverse childhood experiences, a lot of times, leads to chronic illness later in life. We need to start giving people the tools to heal traumas, and then to also real-time manage stress, so that it doesn't tip the scales into expressing a disease state.

Lauren: Yeah, I love that. That terminology, you just used expressing a disease state, because that really is about understanding that the disease is not you. Which I really think is important. So given your experience as a patient within the healthcare system, as someone who is coaching other patients in the healthcare system, are there ways that it's working? We talked a little bit about some of the ways in which it's falling short, but I would love for you to pinpoint for us … what are the advantages and disadvantages of this current US healthcare system?

Sharon: Okay, so the advantages are, I think, we have a lot of really smart, well-meaning people who go into the medical field. Whether to be a doctor, to be a nurse. But then what I think happens is, we are in a system of teaching these people in a way that's broken. So I think they go in with the best of intentions, I think that we could have some of the most amazing doctors, between the technology and the advances that we have access to. There’s so many things that should be putting us at an advantage and should be putting us in a really good place. But then we're still teaching people to do things the same way. So when I read that the system is still sort of a hazing-type situation where it’s like … you have to stay up all night, and you have to … We don't even allow pilots to fly planes past a certain amount of hours, yet we're gonna put someone up all night and have them cut into somebody.

I went in for an emergency appendectomy, and it’s two o'clock in the morning. And the guy was, like, “This is my third tonight!”

And I'm thinking, have you slept at all? And you're gonna cut open my body? 

Lauren: Yeah, not okay. Why do we have to make doctors inhuman? It encourages them not to treat people as humans.

Sharon: Right, it's the opposite. We haze them like they're going into the Marines. And then there's just that disconnect, then they're traumatized — from their experience of becoming a doctor. And they're also then raised up on this pedestal in their own minds, like … well, I went through all that, you should have respect for me. And I know better than you. We've created the monster that is hurting us.

Lauren: You’re the first person who's really pinpointed that. In all the time I've been doing this show, and I think you could not be more correct. I couldn't agree more.

Sharon: Well, you really hit it on the head by saying we've tried to make them not human … and then how can they relate to humans? The fact that now we're having to rewind, stop the tape and teach … there's actually classes for empathy now that they're teaching doctors. And it’s, like, wait a minute. I'm not saying everybody is empathic, but that's something that if it's nurtured, we all sort of have to a certain degree. But you beat it out of them at a certain point, and then … oh, we're gonna reintroduce it now.

Lauren: But don’t you think that's also as much a part of our educational system, it’s not just medical school? 

Sharon: No, no, it's everything.

Lauren: Right. Because we often hear on the show that people are at their sickest when they're in high school or college. It's when people are encouraged to cram and stay up all night. It's when they are overworked and under-appreciated. And also thinking about our college system here in the US where it’s, like, you can't just have a Bachelor's degree, God forbid that’s all you have. And who can afford to have that? So the Catch-22 that so many students find themselves in, that's a dehumanizing process. Let alone what happens in early childhood education. I love when I see that there are schools that are making time for mindfulness, or talking about relationships — but that doesn't happen in every environment now. And people don't necessarily have that at home. So if they're not learning that at home, we have to set them up for success elsewhere. 

Sharon: Right. I don't understand. I think it would be really nice if we could just sort of rip a lot of our educational system down to the pegs and start over. Because just from my small experience, and what I know from the people in my life, I haven't used so much of what I learned.

Lauren: I did not need to know beyond algebra. I truly did not need to know it.

Sharon: And to think that those are the things we focus on. And then I got out and I’m, like, I don't know how to do my taxes.

Lauren: Life skills, yeah. I don't know how to budget, I don't know how to pay my bills, Let alone, the … I don't know how to take care of my health part of it, or how to stay healthy in the midst of it.

Sharon: Exactly. Thank you. Like you said, mindfulness in schools. There's another group of people that are up against impossible. Teachers, what we expect of them. They're have to make sure the kids achieve a certain thing on a test. It’s standardized this, standardized that. Where we've gotten away from being human.

That and any place where power and profit have been allowed to be king, is where we have screwed ourselves so seriously.

In our food system. And in our health care. Anywhere where someone is profiting from us suffering, basically, or from things being a certain way. 

Lauren: Because they have to sell us a solution. It's manipulative, and it's not human. 

Sharon: No, it doesn't. It doesn't serve most of us, it serves some of us.

Lauren: I really love that you're calling that out. So I'm wondering, given all of your wealth of experience as a patient, as a coach … if you're meeting a new client, for example, and maybe they suspect they've got something off … maybe they're living with chronic Lyme. Maybe they're diagnosed, or not, but they're living with some kind of chronic something, we know that they're unwell. What are your Top Three Tips for someone who is coming into this world and joining the Spoonie crew?

Sharon: It's a good question. So Top Three Tips. I don't know, I  would say first of all, definitely don't Dr. Google. And stay away from the negative message boards and things. That's why I try to shuttle everyone over to The Chronicon Community, because there really isn't anything out there like it. There's no positive chronic illness community where we're not just doom and gloom. I always tell people, anchor yourself to what's possible. So find somebody with as close as possible to your situation, who's gotten to the other side — and keep your sights on that person. Check in with them as much as you can. Even if it's just email to say, “I’m having a rough day,” and they can say, “Been there, you can do it.” You've got to find something hopeful to anchor yourself to. That's a two-part answer for one. Stay away from the negative and doom and gloom stuff, and anchor to something hopeful and positive.

Lauren: Which is also connected to: just find a community.

Sharon: Yeah, find support; you cannot go through it alone. I was isolated, both as a new mom. And then, a year-and-a-half later, double isolated with a chronic illness and isolation.

Lauren: And we know that there are scientific studies, that loneliness can be as bad for your health as smoking. So if we know that, probably address the isolation and the loneliness, if you can. I know it’s harder right now to do it, but there are so many virtual communities where there are hugs being given out from a distance.

Sharon: And I just have to say that I feel like so many of us are stuck in ‘that's supposed to be my family.’ And so a lot of people don't reach. If their family in some way can't be that for them, they just think they're not worthy of it in some way.

You can create your own family, and you can create your own communities and support.

It may not look like what you thought life should have been like, or what you had hoped it would be like. But it's still possible. So don't back yourself into a corner of thinking it's not possible because it's not my family or my close friends.

Lauren: But also understanding, as we've talked about, that chronic illness is going to force you to reckon with your own self-worth. So maybe if you accepted that you had some worth, and started investing in that, and started there. Even if you don't believe it, if you just start telling yourself that you're worthy every day, maybe you'll start to believe it over time. 

Sharon: For sure. That's a big one. So number one encompasses a lot. It’s that self-worth piece, it's the community, it's reaching out, definitely reaching out for help. Don’t stay isolated. Secondly, I would say, go back to the basics, really. I tell this to my highly sensitive people. Drink enough water, get enough sleep. If insomnia is a problem, be gentle with that process itself. Because the more we stress out about it, and beat ourselves up about ‘Why can’t I? Why can’t I?’ … Do the best you can and just get back to the basics of what your body really needs to thrive. It sounds simple, but treat yourself like a baby. Nap. And drink water and be kind to yourself. I try to tell people, think of yourself as either someone you really love, or a baby — and treat yourself like that. 

Lauren: Treat yourself the way you treat your dog. 

Sharon: Right! There you go!

Lauren: If you're a good owner. If I think about the way I'm worried about my cat's health, checking his poop all the time, and feeding him top-of-the-line food, and sparing no expense over his medical stuff. I never gave myself that kind of care and nourishment. And when I started realizing that I needed to treat myself the way I treated my pet, it all started clicking.

Sharon: Yeah, you need to make a bumper sticker or a shirt or something! (laughs)

Lauren: (laughs) Well, one of my favorite bumper stickers — totally off topic, that I have ever seen — for those who are also fellow animal lovers listening to the show … I was in New Orleans a little over a year ago, and there was a bumper sticker on a car and it said, “Nothing is im-possum-ble”. And it was a possum …

Sharon: I love that! Oh my gosh, you're never gonna believe it. But I have a shirt that says that!

Lauren: No, stop it!

Sharon: Before I get off, I'm going to get it to show you. 

Lauren: Because nothing is impossumble! (laughs) 

Sharon: Seriously, you’ve gotta cut this out. We are obsessed with possums! 

Lauren: Oh, my God, I am too, and no one else is. Everyone thinks they're creepy!

Sharon: I’m sending you a picture. My son was one for Halloween one year. 

Lauren: Oh, my God. Fabulous! Please send me a picture! 

Sharon: We’re obsessed with them, because they eat ticks. They would come every winter because they can't get food, and we'd feed them and we'd watch them, and they’d come up to our sliding door, and we were obsessed with them.

And when I was so sick, my husband and son got me a shirt with a possum on it, and it says “Nothing is im-possum-ble”. 

Lauren: Too good! I've literally told myself … I only have two tattoos, and I've told myself, anything I get a tattoo of, it has to be something in nature. I want it to be something timeless, and not gimmicky. And I have thought, maybe a possum is nice. 

Sharon: You have to!

Lauren: You mean, nothing is impossumble! 

Sharon: It’s true. It's totally true.

Lauren: Anyway, that was totally off-topic. We were talking about self-worth. Number two was …

Sharon: Number two was getting back to the basics, and treating yourself like a baby. And what I was gonna say for number three is the mind/body medicine piece. I cannot stress that enough to people — the importance of building relaxation, stress resilience, into your every single day. Because it really is the root. They say 70% to 90% of all doctors’ visits are stress-related, and people are, like, “Yeah, right.” But if you really undo the knots back … a lot of the times it is stress or trauma, or one of those things that trips your nervous system. I'm just gonna say this, the body cannot heal in a stress state. So if you're in chronic stress state, it's prioritizing your survival. It's not prioritizing repair and healing. So that is really, to me, the absolute foundation. And it's the hardest one to get to when all you can think about is … my life is in danger, or my life is somehow compromised. But when you have chronic illness, sign up for that stress reduction class or sign up for something that's going to hold you accountable for working on it. Because if you don't get that under control, you can take all the supplements, you can eat all the organic food, you can do everything perfectly. But if you're running in a stressed state, it's going to keep sabotaging that and undermining it. I know it's a hard one. The other thing is, there's so much resistance in our community, at least at the beginning, because we've been told that our illness is in our head. And so to think … oh, so I'm supposed to do this thing that maybe says that's part of … it is part of the problem, but it's not the whole problem. It's just contributing to the problem. This is not to say your illness isn't real, it's somehow your fault, or made up in your head. No, this is to say that we all have an adaptive thing that's happened in our nervous system, basically, over time. And we just have to correct it. It has maybe served us for some point in our lives when we needed it. 

Lauren: When we were literally running from lions.

Sharon: Right! I mean, that's where I can go off on a whole other tangent about epigenetics. But people who are descendants of Holocaust survivors …

Lauren: Generational trauma’s real. 

Sharon: Yeah, that's one obvious one. But like you said, at some point, we were all in some sort of danger. Nobody thinks about it. But in Sicily, there was extreme poverty, there were natural disasters. And then there was the northern taking over. There's just all this stuff that nobody even thinks about in their own history, that when you learn it, you’re, like, oh, I understand now why I don't trust government … or, oh, that makes sense. It's real.

Lauren: And if you unravel it, or at least get to the source of it, it's just about going, oh, that exists. And sometimes it's as simple as knowing, and it can help shift your mindset.

Sharon: It’s the shifting. I run Mind Body medicine groups, and people are, like, “I can't stop my thoughts."

And I’m, like, “Nobody can. We’re not supposed to. It’s about noticing what you're doing and being, like, oh, but I can make a different choice.”

Just stopping it and redirecting. It's not about being perfect; we're never gonna not have scary thoughts or not have stressful things. But it's about redirecting. And then that sense of self-efficacy: Oh, I can do something for myself. And then there's not that helplessness that keeps us feeling unsafe throughout life.

Lauren: I love that. What about three things that you turn to to light yourself up? Three things that despite your maybe lifestyle adjustments that you've had to make around your diagnosis, you turn to when you need a moment of joy. It can be a comfort activity, or a “guilty pleasure”. Although, the more I ask this question, the less I believe that a guilty pleasure even exists. But, you know, something that you indulge in to make yourself feel good. Where are the places you turn?

Sharon: So, I'm super obsessed with my culture, which is Sicilian-American. This whole pandemic, I've been just lost … I was supposed to go to Sicily over the summer, so I'm just lost in Instagram, videos and pictures, and that just lights me up when I see Sicily or Italy, places I love. Then again, with the culture, I've done a ton of ancestral research. I’ve learned cultural dances. And strangely enough the tarantella, which is a traditional Southern Italian dance, was taught, or was used to heal, from the bite of a tiny spider, tiny arachnid, and when I learned that …

Lauren: Stop! well, first because the name Oh my goodness.

Sharon: So the first time I was in class with the folk teacher, and she's telling the story of the significance, I started crying. I’m, like, “You don't understand. I'm here because I have Lyme disease, and I'm here to do his cultural dance that's supposed to heal you from the bite of a spider.” It was just so powerful. And then she explained that after a while, it wasn't really believed that it was the bite of a spider. It was that women felt so oppressed that they were in this state. And I’m, like, “Either way!” 

Lauren: Either way it works!

Sharon: Right. Trauma, which may have led to why they were so sick from the bite of a spider. To me, it made perfect sense. So anything cultural, I love that. And then, definitely, my son. He always lights me up. This pandemic has been so hard, and he's been homeschooling. He’s my motivation to go outside every day. And he's been my motivation, actually, throughout the whole journey. Because I just wanted to get better. Even the days when as you said, self-worth is so important. But also something outside of yourself, because sometimes you can't find the motivation for yourself, you just can’t. Sometimes we all have those days where we’re, like, whatever … the world will be better without me … or, what does it really matter, whatever. But I always had him. I matter to him. And I want to be better so that he can enjoy life with me, and I can enjoy life with him. So he's really a source of joy for me, a source of purpose and meaning, and his outlook on life is just amazing. Since we are on the topic, I just want to add that a lot of us feel so much guilt as parents with chronic illness. And at one point on my journey, when I was feeling particularly guilty … really, really bad … my health coach said to me that she had coached somebody with MS, and at one point … that was a long time ago … she was talking to her grown daughter, and she said, “You know, I know my mom felt really bad about being sick for most of my childhood. But it taught me so much empathy. And it taught me to really slow down in life.” And I thought about it, and I was, like, my son always had my undivided attention. It was just that we were laying around a lot, reading or doing puzzles, and we didn't go out and do a lot of things. But he was always happy. It was enough for him. And I didn't feel like it was enough. Like, I should have him in all these groups and doing all these things. 

Lauren: Social pressure. 

Sharon: Yeah, exactly. And it was enough for him. And the number one feedback we get from all his teachers is that when there's a new kid, he always jumps to volunteer to help them find their way around, that he's super sensitive and empathetic to people.

I’m, like, maybe that wouldn't have been the case if I hadn't gotten sick.

Lauren: I like to think you would have raised a pretty empathic child either way, but still!

Sharon: I hope so. But it, definitely, can be a sore point to touch back on guilt. I could look at all the things that I didn't do. But it could also be, like, you know, we've found joy despite the situation. So, definitely him. And then the third thing I would say, that I always reach to … definitely all my mind/body practices. When I'm really struggling … this last month, like you said, I've been in a flare, and sometimes my mind will start to go, like, oh God, how long is this gonna last? And then I’m, like, nope, I just need to do the things I know to do. And at some point, the wave will be over; I will be on the other side of it. And so I just always reach to those things — like meditation. And tapping, I love tapping. Just things that bring me back. It's hard because when you're sick, sometimes being in your body, you don't want to do things that bring you back in your body. But it's amazing. All these years of doing this work, I still find things where I’m, like, you know what, I'm not accepting that I'm resisting it. And I'm having to do that healing work of well, can I just accept this is where I am and love myself? And not seeing it as, like, you're going against me. There’s always work to be done there. And every time I do it, I always see it like a video game. I've leveled up, I got through this. And like we were talking about before, it's given me actually better tools to work with the people I'm working with, too.

Lauren: Well, and it's also making me think about your relationship with your son. What better way to model self-worth and self-love than by walking the walk and talking the talk. So your son is seeing you react to yourself, find love and compassion for yourself. And he's learning that because he's watching you do it.

Sharon: Yeah. And when I don’t, he calls me out. He’s, like, “Mom, you would have told me to be this way with myself. Be kind and gentle.” And I’m, like, “You're right. Thank you for calling me out on that and keeping me honest. It's true.” 

Lauren: That's gorgeous! So what is your ask for listeners today? What can they do to support you and your community in the work that you continue to do?

Sharon: Again, I'm just so passionate about getting the word out about mind/body medicine, because again, regardless of chronic illness, physical or mental health, I really think it's the healing we all need right now. Especially, I feel, if you think you’ve never been traumatized before, we're all collectively traumatized by this pandemic. I was trained under Dr. Jim Gordon through The Center for Mind-Body Medicine. I would just ask people to go check out what he does. He's worked in Gaza. He's gone to Sandy Hook, where there's been school shootings. He goes wherever there's a need to help heal the trauma, to help people cope. He goes to Native American reservations.

He literally goes anywhere it's needed, with his teams. And his motto is ‘teaching thousands to heal millions’.

I've gone through other stress reduction groups, and done all these things, and a lot of them are very proprietary, kind of like … this is our information. He’s, like, just get it out there, disseminate this information as much as you can. Because he knows that's how we're going to heal the world, by teaching people how to help themselves, and then they can teach it to the next person. And then they can teach the next person. And then it's just going to have this massive ripple effect where we all can help manage ourselves and help other people. I'm just so passionate about that. I think if we can learn these tools, and then share them with other people … whatever the powers that have so much control over the things that we don't in life … again, the food system, whatever … we’re going to be able to better ride, navigate those situations. Because we can't necessarily always stop them. We're trying, right; we're trying to stop racism, and we're trying to stop all these things. But while we're still in the thick of it … these things may not change in our lifetime. We have to learn to be kind to each other and to help one another at the smaller level.

Lauren: Grassroots.

Sharon: Yeah. So that's what I'm passionate about. Anyone who wants to talk to me about that, please reach out.

Lauren: Talk about having a purpose, huh.

Sharon: Yeah, and we all have a role in it. Don't think that you or anyone listening is any less important. We can all do this. It's something we really are called to do.

Lauren: I love that. Okay, so what's next for you in your advocacy journey? And in your wellness journey?

Sharon: Yes. So in my wellness journey, again, every time I have a flare-up, I kind of start to reevaluate. And, again, this time, I've really gotten back to the mind/body. It’s what I needed, and it's what I'm teaching. That usually happens, right? We teach what we need.  I think I told you, right before my first eight-week group, I started with this major flare-up, and I’m, like, oh, God, am I going to be able to do this? But I’m, like, no, this is good, because it's helping me remember why these tools work and why they're so powerful. So I'm just planning on upping my mind/body medicine game personally. And then it kind of translates into what's next for me professionally. Which is, I've started these eight-week mind/body medicine, stress reduction and trauma healing groups. I'm just going to keep doing them, bang one right after another. Right now, I'm only doing one at a time, because I want to try to focus on the people I'm working with in those groups. If there becomes a bigger need, and I can serve more people, I may do two at a time. But I’m committed to keep doing this. Because like I said, people who were not aware that they had trauma, there was this kind of undercurrent, and then this pandemic … boom! Okay, we're faced again with … when is the world a safe place? Are certain people safe to be around? We’re kind of questioning, it's opening up a big can of worms for a lot of people who, at some point in their life felt like the people around them weren't safe to be around, or the world is not a safe place. 

Lauren: We’ve all got bodies not safe to be in. 

Sharon: Exactly, exactly. I'm seeing a lot of people really struggling. So I just want to keep getting this work out to people so that they can get some relief. Because chronic illness is suffering. But to me, the worst suffering has been in my mind through this whole thing. The fears; it’s not the physical stuff, it's really the fears, it's the anxieties. And it's not trusting that if you go to a doctor that they are going to help you, that the people who are supposed to help you are going to help you.

So I really want to bring people some relief from whatever are the demons in their minds, that are old traumas or anxieties that they're suffering from.

I just want to give people relief from that — because it's so painful.

Lauren: I’m so grateful to know such an empathic and kind soul as you.

Sharon: That’s mutual!

Lauren: Thank you, Sharon. Can you remind everyone where they can find you if they want to work with you or engage with your work on some level? Where can they find you?

Sharon: Sure. So they can find me on my website, which is IntendedHolisticWellness.com.  On social media, it's @IntendedWell. I'm on Instagram, Facebook and Twitter, so reach out any way that works for people. I think one of the hardest things in wellness is that it's such a privileged thing, and I'm really passionate about making it not, so I try to help people answer their questions. I don’t care if they work with me or not. I try to give people something to go on. So please feel free to reach out.

Lauren: I love that. Sharon, thank you so much for being on the show today. It's such a pleasure to hear more of your story, to really connect more on these deeper discussions, and I'm so honored to have had you on. And I can't wait for everyone to hear your message. Because it is one of love and wholeness and reaching out to reach within. Sharon Leggio Falchuk, thank you so much. 

Sharon: Thank you. It was an honor. You're amazing. 

Lauren: Oh, you are!