Overview: Dr. Connie Boczarksi was a master at pushing through, until her body said no more. Connie had Chronic Fatigue Syndrome and Chronic Inflammatory Response Syndrome for 5+ years, though had health issues bubbling under the surface for much longer.
Her key symptoms included brain fog, debilitating fatigue, crashes, light sensitivity, mold sensitivity, nausea, dizziness, and more. Connie’s was the recovery story I watched that made me believe I could heal by retraining my brain, since our stories had so many overlaps.
In our chat, she shares her authentic experience about brain retraining and shares her nuanced thoughts on questions like “do you need to move out of a moldy place to heal?”
We also talk about the “achiever” culture in brain retraining, and why that isn’t always a good thing. Connie shares brilliant wisdom on how resilience is more important than grit, which I think could be a TED talk.
Liz: My guest today, Dr. Connie Boczarksi, was the person who inspired me that I could fully heal from chronic illness by retraining my brain when I watched her recovery testimonial on the DNRS website. And she is here in front of me now, and I am here many thanks to her.
Today she’s going to share with us her full recovery story in detail.
Thank you so much for being here, Connie.
Connie: Oh, thank you so much for having me. And I just need to say that I love the full circle moment of kind of the ripple effect of my testimonial being up, that showing you that there’s hope and that you can heal, and then you are now doing that for so many people as well.
So that just for me is so beautiful, that is the gift that keeps giving.
Click on toggle title to expand each section. Nothing is medical advice, we are just sharing our stories.
Liz: So what’s your purpose for sharing your story today?
Connie: Yeah, well, along the same lines of what we were just talking about, that healing is possible, that there’s hope for recovery, even when you’ve been chronically ill for a long time.
I know that when we get into that place of chronic illness, it can often seem like there’s no hope and there’s no way out.
And so I just really am passionate about helping people realize there is hope and you can heal.
Liz: Very powerfully stated. So did you wanna take us back and talk about your life before you were struck down with chronic illness?
Connie: Sure. So before becoming chronically ill, I looked like I was leading a quote unquote “normal life,” doing all the things, working, living with my long-term boyfriend, socializing, exercising, traveling. You know, I was doing all the things that looked like a normal life.
That being said, when I look back, I had dealt with chronic health issues my entire life, so things were always bubbling under the surface a little bit, but I was always able to control them or have coping behaviors and still lead a somewhat normal life.
I also, back then, was an absolute study in pushing through.
I was a master at pushing through, so all of those things I was doing was driven by this underlying, push through, keep going, go, go, go.
So normal, but certainly not healthy.
Liz: Yeah. I’m sure many people listening can relate. I certainly do, and that was one of the things that connected me with your story among some other things that we’ll get to.
But yeah. Can you describe then the onset of when you fell ill?
Connie: Yeah, so I was going through a ton of stress, and it was ongoing for many, many years. And just instead of starting to calm down, just kept snowballing more and more and more.
And at the same time, I was working in a moldy office, of course, had no idea. Hindsight is 20/20.
And for a long time, I was kind of able to cope with everything. And one of my big coping skills was exercise, the whole push through thing again.
I was just exercising to deal with all the stress, but more and more, I was just getting sick all the time.
And I would get sick, and it would last for weeks, you know, not normal at all.
And that just kept kind of building on itself, until it was getting more and more obvious that there was something up and something wasn’t okay. And then what unfortunately happened was I moved from a moldy office into a super, super duper moldy office, and that’s when everything came crashing down. And again, looking back, totally obvious at the time, had no idea what was going on.
Liz: Ooh. And I just wanted to clarify. So what was your job? You’re a doctor. Can you talk a little bit about your job at the time?
Connie: So I was a chiropractor. I practiced as a chiropractor for just a little under 15 years. And that was one of the challenging things, too, is that I was in a profession where I was helping people.
I was talking about holistic and natural healthcare, and yet I was getting sicker and sicker even though I was doing all of the right things, trying to eat right, exercise, get my rest, do all the preventative and proactive stuff.
And also, one of the challenges is that being a chiropractor is a very active job.
Which is wonderful when you feel good, it’s really hard when you don’t. And so having to go into work and be active every single day was extremely challenging.
Liz: So what happens when you move into this very, very moldy new office?
Connie: I crashed and burned pretty quickly. And again, I look back now and I’m like, “Oh my gosh, how did I not put two and two together?”
But when I was doing the build out for the office, I came down with what I thought was the worst flu I’d ever had, and I literally just couldn’t even open my eyes. They hurt so bad and was just in bed for two weeks straight, and it just never lifted and it never went away.
And all of the symptoms just kept getting worse and worse instead of better.
And, you know, I eventually was able to get out of bed and start doing some things, but life was never the same after that. And just, that’s when symptoms kind of really rapidly started piling on after that point.
Liz: So what were some of your symptoms? Can you talk a little bit about that?
Connie: Yeah, for sure.
Some of the most debilitating symptoms were fatigue and brain fog and cognitive issues. Those were the ones that were just there 24/7 and just made life…I mean, you know, there’s no work around for fatigue when you don’t have the energy to even get up. It’s hard to do anything. I also had some pretty intense dizziness and nausea, which again, can be pretty debilitating.
I had about a million other symptoms as well, pain pretty much everywhere and all kinds of other sensitivities.
But I was able to kind of do some workarounds for most of those versus the fatigue and the brain fog. Those were the things that I had no workaround for.
There was no shortcut or way that I could just say, “Oh, well we can do this instead.”
Liz: So I assume you might be talking about for workarounds, like eating even healthier or avoiding certain chemicals. Is that what you mean for workarounds?
Connie: Yeah, a hundred percent. So I became sensitive to light and sound. Nothing fun about that, by all means, that can be absolutely debilitating as well. But I could do workarounds to still kind of function a little bit, whereas the fatigue just leveled me. I mean, there was no workaround.
There were days where it was kind of like, “Do I shower or do I eat? because I don’t have energy to make both of those things happen today.
And my functionality, again, this is where the pushing through comes in.
So even though I was absolutely exhausted, I still kept pushing through. And that got me to a place where I was less and less functional over time.
Connie: And this is just classic story to show you what a master I was at pushing through. So this was after I had kind of had my tipping point and really had all of these symptoms going on, and no one knew what was going on.
So I had joined the gym.
Liz: [Surprised eyebrows.]
Connie: Exactly. I mean, it’s just comical.
I had joined the gym to try and get some endurance back and get on with it. And so I’m at the gym and I’m doing cardio of all things on a Sunday. On a Sunday, mind you, and get a phone call. And it’s my functional medicine doctor.
And I think, “Gosh, that’s so weird. She’s never called me on a Sunday before.” So I pick up the phone, she can hear all the noise in the background and she says, “Connie, where are you right now?” And I said, “Oh, I’m at the gym.” And she said, “Oh. What are you doing right now?”
I said, “I’m exercising.” She said, “Can you please stop and sit down for a moment?”
And I thought, “Okay, this is really weird.” So she says, “LabCorp called me a couple minutes ago,” and again, just to remind you, this is a Sunday.
And [my doctor] said, “Connie in, I don’t know, 15, 20 years of practicing, LabCorp has never called me on a Sunday. Your values were so high for Epstein-Barr that they weren’t comfortable waiting until Monday to give me the report.”
So that’s just a little sliver at how I took pushing through very seriously.
Liz: Wow. I actually had a similar onset, the mold and the EBV [also referred to as mononucleosis, HHV-4, or glandular fever]. Interesting. So was it acute or was it chronic? I assume it was acute then? Do you remember?
Connie: All of it, okay. Yeah. I don’t remember all of the ins and outs of it. I think there was four different ones that she tested, or maybe there was six. I know there was multiple numbers, different ones.
Some were acute, some were chronic. Basically all of them were awful.
Liz: So that’s similar to me, too. I had the chronic and the acute, which makes it seem like it was a reactivation.
[Note: for those interested, not medical advise, the lab tests I believe are EBV VCA-IgM (acute), VCA-IgG (chronic), EA-D (Early Antigen D), and EBNA.]
Connie: Yes and no. So I was seeing a functional medicine doctor who was lovely, super kind, super supportive, but I mean, I had been seeing her for so long and instead of getting better, I just kept getting worse.
The nice thing is that she was kind and supportive and all of that. So when she ran those numbers for Epstein Barr, she also ran numbers for other chronic infections like mycoplasma and things like that.
All of it came back positive and she had the integrity to say, “Connie, I’m not the person for you at this point. This is too complicated. I don’t think what I can offer you in support is appropriate for this.”
And that’s where things kind of took a sharp, not so great turn, because I really ventured then into more mainstream medical world and started working with a doctor that worked with chronic fatigue.
His [the new mainstream CFS doctor] whole approach was we have to go after all of those low level infections, and six months of antibiotics later, I was a heck of a lot sicker.
Liz: Yeah, the kill approach. And I sought out that I was trying to get my hands on antivirals anti-this, and I actively sought that out. Were you trying any supplements, too, to kill things or herbs?
Connie: All of it. All of it. Yeah.
And what I realized over time was that trying to actively go after those infections was totally counterproductive.
It dysregulated me so much and made me feel so sick that I couldn’t tolerate it. And two, we never got anywhere.
My approach was always, I’m willing to suffer if it’ll get me somewhere. But if I’m just suffering through this and there’s no end result…what are we doing here?
Liz: So did you end up going to see other specialists?
Connie: I did, and to be honest, it was really kind of brutal, especially starting to go into more mainstream medical because they didn’t validate that I had all these high levels of Epstein-Barr or mycoplasma and things like that.
So my experience for many years within the medical world was being treated like I was crazy or I was depressed.
And so on top of everything that’s going on, we then piled in a nice, healthy dose of medical PTSD from just all of the really, really horrific treatment.
I mean, I had some doctors be extremely dismissive and unkind to me and definitely had more than one time of bursting into tears. Definitely more than one time of having some fights.
So yeah, going into the medical world was not great.
Connie: I finally, after a couple years, found a doctor that knew about mold illness and that was the first doctor that finally within 30 seconds was like, “You have mold illness, you’re classic.”
And that was helpful and also not helpful.
Within 30 seconds he was like, “You have mold illness, you’re classic.” And that was helpful…and also not helpful.
Liz: So was this the CIRS doctor? [I knew this from speaking with her earlier.]
Liz: Okay. And CIRS is chronic inflammatory response syndrome. I actually didn’t know about the term until I think, I don’t know if it was your [testimonial]. But I Googled it and I was like, “I have every single one of these symptoms except one.”
But my doctor had just put it under the umbrella of Chronic Fatigue Syndrome triggered by mold. But I did have all the chronic inflammatory markers.
[Note: Not fully sure what all the markers are, actually, but I did have high TGF-beta, high C4a inflammation marker, and more. Nothing is medical advice.]
So you had said it kind of helped and hurt. Can you describe that?
Connie: Well, it helped just in the fact that I had a doctor actually treat me like I was not crazy.
And validate you’re not nuts. And he also, there’s my cat coming in…[laughs].
He took blood work that actually reflected how sick I felt. And that was one of the challenges before was all of these doctors were taking CBCs – complete blood count – and it was normal.
And so they were saying, “You’re fine.” And this doctor took all of these other values and everything was so, so far out of whack.
And it was just validating to have someone say, “Yeah, you really feel awful. I can tell you do based on this blood work. You’re not making it up. You’re not nuts.” That alone was just like, “Thank you.”
The challenge was, is that now that I knew it was mold that was making me sick, and I was told that you have to avoid mold. The only way you’ll heal is to not be around mold.
I became so incredibly hypervigilant around mold that my sensitivity went through the roof.
Because I was constantly on the lookout for mold, and so I just went from bad to worse.
Liz: This is definitely so similar to my own experience. Because once you’re aware of it, I then became hypervigilant so much that if someone had a moldy sweater, there was mold in their house and that sweater came from a bottom drawer, I would know and I could smell.
I could know which wall it was in. So that’s one of the parts that I related to from your testimonial that I had seen. I remember that as well.
Reminder: Nothing is medical advice.
Liz: But I do wanna ask, was it helpful for you to get outta the mold? That’s a popular question people ask, like, “Can you heal when you’re living in tons of mold or working in tons of mold? [for those able to work]”
What’s your experience with that?
Connie: Well, for me, thankfully I was able to move to a clean environment.
At that point, my sensitivity was so high. Just like you said, I had the superpower where I could walk into a room and I could go that right there, that’s been someplace that isn’t clean. And I mean, I was right every single time people were like, “Oh my gosh, how is she doing this?”
So I suppose I could have healed if I had stayed in an unhealthy environment, but I don’t know, because my system had gotten so sensitized and in order to let my brain and nervous system calm down, I really do think that I needed to be in an environment that was cleaner and mold free so that my limbic system could finally pause and take a breath and my nervous system can go, “Okay, we’re safe and we can start healing now.”
There’s so many things that go into that conversation. This is just my take on it. Not saying I’m right, not saying I’m wrong.
By all means, if you can get into a healthy environment, that’s always the first choice.
The challenge is, is that that’s not always so easy, and this is one of the things that I find with clients is that, you know, we’ll be talking about should they move, should they not move, and their options for moving are either not many or even potentially worse, or the amount of stress that’s involved in trying to navigate all that. All of that is valid and true and real.
So when I talk about this whole story, usually what people say is they’re like, “I can’t believe you weren’t diagnosed for so many years.” Because back then mold wasn’t really on the radar of most doctors. Thankfully, now more and more doctors are aware of it. People are getting diagnosed, which yay for all of that.
All of that being said, I think there’s a big difference between someone has some markers for mold, either in their urine or their blood, versus someone has full blown CIRS simply because the level of reactivity and the level of inflammation in the system can be vastly different.
And so I’ve had clients that have said, “You know, listen, I’ve been diagnosed with mold illness. I can’t tell you when I’ve ever reacted. I’ve never noticed it.” Versus someone that says, “Oh, I can tell you exactly when I react, what it feels like. I know exactly what it’s like.”
So I think it’s truly not one-size-fits-all “everyone can heal no matter where they are.”
The other thing that I’ll bring into that is genetically we are all different.
So for example, I genetically am incredibly sensitive. I have absolutely changed that to a great extent with brain retraining and other nervous system regulating things. I will never be like my friend Mark who’s never been hungover once a day in his life, and it’s not like he didn’t try when he was in college.
He really tried.
Connie: When you have very different genetic profiles, I think that also does need to come into the conversation a little bit. So I don’t know if that answers the question or if that’s just way too much information.
Liz: No, it’s a nuanced way and yeah, for me it honestly, getting out of the mold, it was very helpful, but the [full] avoidance approach didn’t work because the littlest thing would give me a crash, and I would be having to walk on eggshells.
Liz: So can you describe some of your experience walking on eggshells?
Connie: Yeah, absolutely. I think after I was diagnosed, my whole life turned into walking on eggshells because you just have this sense of never feeling safe. It’s like there’s this silent thing that’s lurking and you don’t know where it is.
Cause that’s one of the challenges, as you know with mold, you don’t always see it. You don’t always smell it.
I completely lost a sense of safety in the world.
After I was diagnosed, my experience was kind of walking on eggshells always, especially if I was going to a friend’s house that I hadn’t been to before, or to a location that I had never been to before.
And the challenge was, is then I had more and more experiences that reinforced that of, “Oh, that went really bad. I’m now in bed for two weeks, and yep, that just reinforces I’m not safe in the world.”
Liz: I assume this affected your relationships with your partner and with friends?
Connie: So my boyfriend and I had already broken up by that point, so that was already kind of in the past, but this had a huge impact on relationships. Definitely lost a lot of friends during that time, and I think truly just people don’t know what to say, you know?
It’s not that they don’t care, it’s just they don’t know what to say. They don’t know what to do.
Thankfully no one treated me like I was crazy. I wouldn’t be surprised if people thought that, but at least people were kind enough to not say that, which was really nice. And I also, I just didn’t have the energy to socialize really.
I really kind of fell away and isolated just because that just took more energy that I didn’t have.
So I didn’t really have a whole lot of interaction with people.
Liz: Yeah. All right. Can you describe maybe your rock bottom during your chronic illness journey?
Connie: Yeah. So I had a couple rock bottoms.
I would say getting diagnosed with CIRS was a rock bottom because for me it just meant my life is over. I can’t travel, I can’t go anywhere. How do I navigate this?
Because I was told, “You’re never gonna change this. Your genetics are awful. This is your life.” So that was very much a rock bottom for me.
It was also a rock bottom when I found a new office to move my chiropractic office to and did all the things I was told I was supposed to do of getting it deep cleaned and inspected and make sure it’s a safe, healthy environment.
And I worked there for less than a day and then I was bedridden for two weeks. That was very much a rock bottom.
And then I would say the other rock bottom was when I decided to close my office and that was hard.
You know, I had spent a lot of time, a lot of money getting my degree, and I’ll be honest, it was absolutely terrifying to me to not know what was on the other side of that because I didn’t, you know, I didn’t know how I was gonna support myself.
I didn’t know what I was going to do if I walked away from my practice. So that was very much a rock bottom moment for me.
Liz: Yeah. And sadly, I think a lot of people listening can relate.
And I also wanna go back to the first thing you said about getting that diagnosis. And it’s so interesting because it seems like there’s just extremes and the healthcare world, it’s either “You’re crazy,” or “You are this victim who has all these things wrong, and you’re broken.” And when we have these things [CFS, CIRS, etc.], both of those [approaches] can be so incredibly damaging.
There’s another way to talk about these things that’s not, “Oh, you have to walk on eggshells for the rest of your life,” or “You’re just crazy.”
And it gets me, I get angry… because we’ve all been there. It’s like, “Why does it have to be like this?”
Connie: Yeah, I know those two super extreme approaches, neither of which is supportive. I think so many of us have been through in relation to how we’re treated in the medical field.
And I do think for so many people it just creates medical PTSD. It really does. I don’t know how it couldn’t, which is a shame.
There’s no reason, because that’s the last thing you need when you’re already dealing with chronic illness is to pile one more thing onto that pile.
Liz: So were there any lifestyle and diet changes that you found helpful during your recovery journey?
Connie: Yeah, you know, I always tried to eat healthy and somewhat organic, so I never saw huge changes when I tried to make dietary changes.
And I think I was also at the point where I was so sick that I just couldn’t tell.
I tried to do Paleo, but the nausea was so severe that I just, I couldn’t do it. I literally could not do it.
What might have been helpful was possibly doing some diet to reduce histamine, but basically what had happened is back when I had to move out of my house…so was living in a hotel for five months and the doctor I was seeing then said, “You know, I think you have Mast Cell.”
And said, you know, look it up, see what you think.
And I looked it up [mast cell activation syndrome], and I had every single symptom. And I just said, “I can’t take another no in my life.”
I’m living in a hotel. I can’t go anywhere safely. And now you’re gonna tell me that I can’t eat strawberries and spinach? I can’t. I literally cannot do this.
And so, I now look back and see that it kind of helped me not go down the rabbit hole with food. It might have been supportive at the time because I probably was reacting to all of those things.
But I basically just lied to him and said, “No, I read the description. None of those things fit.”
They all fit.
Liz: Had you already had the CIRS diagnosis at this point?
Connie: I had, this was working with a mold doctor who, he’s actually I think talked at some of the Shoemaker conferences and things like that, and I think he was one of the first docs that was starting to kind of put the pieces together of, usually it’s not just CIRS, there’s usually all of these other ancillary things going on as well.
Liz: Yeah, and with Mast Cell Activation Syndrome, the low histamine diet is [often] recommended, but you said, “Nope, not going down that route.”
Connie: I couldn’t. I was living in a hotel and every morning I would make a shake for breakfast because that was somewhat easy to do, and a big part of my shake was spinach and strawberries, and I was like, “I, I can’t rework this. I don’t have the bandwidth, I don’t have have the emotional or physical bandwidth.
We’re just not going down there.”
Liz: You’re not taking my strawberries from me.
Liz: Oh gosh. Oh yes. The diet rabbit holes and yeah, the Shoemaker…I know people who, you know, they see the CIRS documents and they end up spending $30,000 going down those rabbit holes, and they’re just more scared at the end.
Connie: Yeah, absolutely.
Nothing we share is medical advice. Please consult trusted medical professionals.
Liz: All right. So how do you ultimately discover the modality that would work for you? Can you describe that point?
Connie: Yeah, so I had closed my practice and moved up from Florida up to Georgia to live with family. And my mom’s house also had mold, so that had to be remediated.
Thankfully we found a really good inspector, found a really good remediation company and the man that owned the remediation company was used to dealing with people that were sensitive to everything, you name it.
Which again, was really nice because everyone at the company treated me with kindness. Everyone at the company was just super nice. The guys would even go get me a glass of juice from in the house cause I couldn’t go in the house, like big burly guys that you wouldn’t think would go get someone a glass of juice, and so sweet and so kind. And so it was just lovely.
And Bill, a man that owns the company, he told my mom about DNRS, and he said, “You know, I think Connie could really benefit from it and I wanna buy the program for her.”
And so he wanted to talk to me about it because he said, “I don’t want her to think that she’s crazy. It’s her brain, it’s not in her head.”
And thank goodness my mom had the sense to go, “Bill, don’t talk to her. I will.” Because at that point I was so combative, I was so combative that there’s no way I would’ve been receptive. And she found the perfect time to weave it in.
And I said, “Oh, I know my brain’s impacted. I can’t add two and two. Of course my brain’s impacted.”
Liz: So the book Wired for Healing by Annie Hopper, did you read the book first?
Connie: I did, and I’ll be honest, when they came [the book and the DVDs], I didn’t want to.
It’s the last thing at Earth I wanted to do, and it was hard because it was really hard to get my hopes up, to be honest, because I had tried so many other things that hadn’t worked. And I think so many people can relate to this.
The crushing disappointment of getting your hopes up and then one more modality, not working.
It’s brutal, but I felt obligated because he had bought it for me.
Truly. I mean, really good manners was the only reason I did it.
So I started with the book and it was… at that point, again, it was really hard to read. I had issues with my vision, I had issues with comprehension, all of that stuff.
But as soon as I started reading it, I went, “Oh my goodness, this makes sense and the science makes sense.”
And that was a turning point because I just kind of went, “This is finally an answer to what’s going on.”
So yeah, that was a big deal, and I read the book pretty quickly, which again, was amazing at that point in time.
Liz: So what part of it made sense to you and can you describe just a short summary of what you learned?
Connie: I think the biggest thing that just stood out for me was just talking about how the brain was stuck in a threat response and just starting to see that.
One of the things that was challenging was there was no mention of mold really in the book.
And so of course my brain was like, “I need absolute certainty that this is gonna work. The mold, where’s the mention of mold?” But I at least was able to say, “Okay, that’s similar enough to chemicals [chemical sensitivity].” It makes sense. So luckily I was kind of able to bridge that gap.
And then the other thing that helped was hearing descriptions of the thinking patterns and the emotional patterns when limbic system is impaired. Literally was like someone had just crawled into my head and described the exact thing that I was experiencing.
So it was the first time that someone had kind of put on paper, “Hey, this is what you’re going through,” and it just reflected perfectly what I was experiencing.
So that also caught my attention because I felt still so misunderstood at that point cuz no one else really seemed to get what I was going through.
Liz: Ooh, okay.
Liz: So now you start the DVDs, I guess.
Liz: How was your experience going through the DVDs?
Connie: It was okay. I mean, I certainly was not able to do, I think it was “do the whole thing in either four or five days.” There was no way, I absolutely could not do that.
It was good watching them in that again, there was a lot of like, “Oh my gosh, this is what’s happening. I now get it.” The other thing that I now can see, looking back, is I went back into push-through mode.
And I went back into, “Okay, I have to try and get all of this done in one day. I have to do all of this homework, I have to.”
And so I definitely went back into that pattern of adrenaline to try and push through and get it done, which I think is so, so common.
Liz: Yeah. I have a few friends who did it that way, too. All right.
So did you have any early wins or how was your experience now implementing the program?
Connie: Yeah, well, I definitely had an early win in that, even just from reading the book, I had had this really sharp pain in my right knee that went away.
I think just from understanding what was happening, some of the fear started to go down, and some of the symptoms started to improve.
So I mean, that for me was pretty dramatic. And that also just was motivating to help me realize, “Okay, this really can work.” So that helped with just motivating me and keeping me doing the practice.
Liz: So can you describe, did you have any ebbs or setbacks while doing brain retraining?
Connie: Oh my gosh, yes. First of all, I had a ton of outside stressors going on when I was doing the program, which is not ideal by any stretch.
And so it was very much an up and down process for me. It was not straightforward. And there were plenty of times when I felt like I wasn’t making progress, and I was going backwards.
So it was very, very up and down for me, no doubt about it.
And I think it is for most people. And it’s just always, I think, helpful to normalize that so people can realize that that’s what happens for everyone.
It’s not something unique or individual to you. That’s really what the process looks like.
It is very up and down.
Liz: Yeah. So can you describe what were some of your favorite aspects of DNRS and what things were most helpful to you about this and brainer training?
Connie: Yeah. It’s funny, you know, when I think about what were my favorite aspects of the program, I have to be honest, I never loved doing it.
I wanna say I did, but I mean, I really did have to tap into quite a bit of willpower to do it. I understand now all the science behind why all of it works and is helpful. But there was never a day when I was like, “Yay, I’m gonna go practice. Yay. I’m gonna elevate my mood.”
All of it was very much “I kind of need to do this because I don’t know what else to do.”
It definitely felt like work most of the time.
Liz: Well, I certainly appreciate your honesty because it is hard work. It is hard work.
All right, so do you have any advice to others? Looking back, you had said you had kind of done a push through approach at the same time. We can’t get anywhere if we don’t actually do the work.
Right. So can you talk about your experience with that?
Connie: Yeah, absolutely. I think there’s very much a balance. Cause like you said, at some point we have to show up and do the work. And for most of us, that involves forcing, I don’t wanna say forcing, that feels like a harsh word, but finding it within ourselves to push through that resistance.
Maybe that’s a better way to put it. The challenge is, is if we’re doing that with a huge dump of fight or flight activation and adrenaline, it’s counterproductive.
I really do think that there needs to be a balance between moving through that resistance without falling back into that old pattern of just pushing through and going to adrenaline to get it done.
And I think for everybody, that’s a process. It takes time to learn how to do that. It takes time to learn what that looks and feels like for you. It’s not something that you just start the program and from day one, you know what that looks and feels like.
Liz: Yeah. And I guess how that relates to real life, that depends like, “Oh, do I do an hour today or do I do 30 minutes?”
Was the full hour helpful for you and continuing with that full hour as it’s recommended in the DNRS program?
Connie: You know, it’s hard to say. I think that’s one of those things that it’s hard to look back and say, was that helpful? Did I need that?
I think in the beginning I did, just because my brain was so stuck in survival mode, I really needed that hour to kind of lift me up out of it.
And I can also look back and see how getting so perfectionistic about it and so rigid about it, and again, going into so much adrenaline to ensure that I did that hour every day, probably didn’t serve me.
There were probably times when it would’ve been a much better choice to maybe do 45 minutes.
And not go into adrenaline, or even a half hour, and not go into that push through and that adrenaline.
Yeah. So it’s hard for me to say did that full hour help. Let’s put it this way, I definitely could have done it in a more intentional way and less of a push-through, adrenalized way.
Liz: So when did you start learning okay about I need to be gentler on myself?
Did that happen during this process or much later looking back?
Connie: That happened farther into the process. It’s funny because people would talk about self-compassion and I heard people talk about Kristen Neff and all that stuff.
And I always thought, “Yeah, whatever. I don’t have time for that stuff. I gotta heal!” which I can’t even say with a straight face.
So ridiculous. Literally, that’s my thought. Cuz again, the whole push through thing was like, “Nope. Eye on the prize. I’ve gotta go, go, go.” Over time, I, thank goodness, started to realize that I needed to learn about self-compassion because I had absolutely no idea what that was, what it looked like, what it sounded like, what it felt like.
So thankfully I started to realize that, oh, actually this is important and it’s something you need to make time for.
Liz: Yeah. And what does that look like for you? Was it taking a bubble bath, or what does it actually mean – Self-compassion?
Connie: Well, for me, a big part of it is giving myself permission to be human, to not be perfect.
A big part of self compassion is giving myself permission to be human.
That, I mean, for me, that’s such a big piece of being compassionate with myself. Along with the pushing through, perfectionism was another absolute specialty of mine. And so really starting to recognize that that’s not helpful and I need to be more gentle and kind to myself.
And also just giving myself permission to slow down was a piece of the self-compassion.
One of the things that I think is tricky with many of the programs that are out there is that as we step away from measuring success through symptoms, we start to measure success through doing and achieving.
And so it’s often, “I walked farther, I ate more foods, or I went more places, or I did this.”
And so it can kind of create this culture of achieving, which I get, but at the same time, it does oftentimes encourage this whole pattern of “I’m going to push through and I’m gonna go into fight and flight and adrenaline to say I did the thing.”
Liz: Yay. I’m so glad you’re talking about this. Especially coming from you, an achiever type person for sure.
An achiever of achievers, saying and telling the whole community this. When we’re talking about our wins, is it just doing more and more and more, or is it how happy we are?
Liz: Yeah. And I think it can be like, “Look, I climbed this mountain. Well, he’s running that marathon.” And now I like, yeah…
Connie: Yeah. That’s something that I really think is important to bring into the conversation, because like I said, I see this with so many of the programs that are out there, and it is all about, “I did this, I did that.”
And absolutely, that’s wonderful.
And I would also add to that, if you’re doing that in a dysregulated state, you’re not patterning in the right direction.
So if you climbed that mountain and you were in fight or flight and adrenaline the whole time, you’re not teaching your brain and your nervous system a new pattern, right? So that I think is such a big piece of the puzzle because what I think it encourages is being gritty and being gritty is all about pushing through.
It is very different than creating resilience. Resilience takes time to build resilience. We need time for self care.
Resilience means we pause, we rest. We don’t treat our body like a machine, and it takes time to build resilience.
So I do think that that’s something that’s important to bring into the conversation. It’s not always all just about, “I’m back to living my life and going and doing!”
Liz: That’s so powerful because… and it’s the opposite often of what we’re told. I mean, there’s even a book on grit and it’s for succeeding, and it’s like “that’s how you succeed!” But healing it’s the opposite.
Grit doesn’t help us heal.
Liz: And it’s building our resilience, which is the ability of our bodies to balance back. And if we’re just pushing through, it’s not giving that restoration and that nervous system in the state to support our body’s ability to do that.
Connie: 100%. Yeah. And I mean, truth be told, I have that book on grit and I read it and I was like, “This is awesome,” because it’s so easy to get pulled into that.
I think our whole world celebrates that culture of grit. And what’s not talked about is it comes with a cost.
You can only override your system so often and so many times before your system says, “no.”
No, no, we’re done.
Liz: Ooh, wow, this is so powerful. I feel like this should be a TED Talk. I would totally listen to that Ted Talk.
Connie: I have to give you credit too, Liz, because you know, when I was getting ready to talk with you, I went to your YouTube channel and I’m like, all right, let me go look at some videos just to see what to expect. And I think it’s Phil. I think it’s Phil.
Liz: Yeah, Phil [M].
Connie: His video had a bunch of views. So I was like, “all right, let’s watch this.”
And so he was talking about, you know, resting and things like that. And it just got me thinking about the culture, and it’s not just DNRS, it’s other programs too, where it’s just “Go back and live your life. Go do.”
And it really got me thinking about that culture of achievement that is kind of celebrated instead of kind of saying, “Hey, what didn’t you do today?”
What did you choose not to do today?
Instead of going 110%, did you say, “I’m going to go 80% so that I teach my brain and nervous system a new pattern?”
So thank you, because it just starred the wheels churning about that whole grit, resilience thing for me.
Liz: Yeah. And I just have to give a shout out to Phil, too, cuz he’s such a great guy.
And two days ago I posted a video [see below] where it was like pacing wasn’t helpful for her, but it was because she had that perfectionist approach to doing less. Cuz she was put so much fear [by a CFS doctor, and past experiences, on what would happen if she exerted].
But Phil on the other hand, you know, he was the other direction where he would just push, push, push. And for him it was learning to pull back and learning that doing 10% less would ultimately help him do a little bit more. By not focusing on all the achievement was like how he ended up being able to do more [in the long run].
Connie: Right. Well, and it’s true. It’s so individual because you’re right. Yeah. Some people get so fearful about the pacing that then they never do anything, so yeah, it goes that way too.
Liz: It’s all so nuanced. Okay, so how long were you chronically ill and then how many months, or was it a year….how long did you feel that your nervous system was regulated and you could recover from these activities?
Connie: You know, that’s hard to answer because like I said, going up until my tipping point, I had years of being functional, but still being pretty darn sick.
I guess if I talk about my absolute tipping point when life just went totally haywire, that was around, I would say five years or so, something like that.
I did brain retraining for a year and a half.
I would say probably around month seven or eight, by all means, my nervous system wasn’t regulated at that point, but that’s when I realized, “Oh, this is actually working.”
So back when I was working as a chiropractor and got diagnosed with mold, I had to move out of my house because my house had mold, had it remediated, and then couldn’t tolerate being in my house. And about seven or eight months into brain retraining, I sold that house. And so I had to go back to the house to get it ready to sell, and I stayed there for a week with all the furniture and the artwork, and I slept on a mattress with all the linens and all of the stuff, and I was okay.
I had symptoms because of all the stress of the move, but I didn’t have all my standard mold symptoms. So that’s when I kind of knew that, okay, this is actually working. I don’t know that there was a point where I went, “Oh my gosh, I’m healed.”
It was more kind of a gradual thing where I just started to realize I’m able to do things.
I started to feel not quite so fragile and like I did have some resilience to navigate if there’s a bump in the road, am I gonna crash and burn or am I actually going to be able to navigate that and get through it?
But I don’t think there was a moment where I went, this is it. Plant the flag.
Liz: So it was a gradual process and you didn’t really see major changes until that eight month mark?
I think some people are looking for something that could happen quickly. I know when DNRS was doing the in-person seminars, people often experienced really powerful healing experiences. I know the Lightning Process, that’s in-person too. People can have powerful healing experiences there and people doing the out of the box programs.
Was that something you witnessed in the DNRS community? But for yourself, you had said you had took longer to see those.
Connie: Well, I mean, I saw changes in those first couple months. I was able to start being more functional. Doing more things.
So I did see changes, absolutely.
And to be honest, going to an in-person program was the thing that made me want to start coaching clients because I did see people just change in front of my eyes in a week. And you know, having been a chiropractor and been in healthcare for 15 years, I had never seen anything like it where people just changed in front of your eyes.
And the challenge is – is absolutely not everyone has that experience – and that doesn’t mean you’re not gonna heal.
I think the more so that you can take your attention, your focus, off of the symptoms, and instead start to view things through the lens of the nervous system and start to view things through the lens of “I need to get my system out of fight, flight, or freeze,” that I think helps because then you’re focused on, “This is what I need to do.”
The more that you can take your focus off the symptoms and instead start to view things through the lens of the nervous system [the better].
Because if we’re in fight, flight, or freeze, our body’s not in healing mode.
Liz: Ooh, shifting the focus to getting out of fight or flight. So coincidentally, one of my YouTube commenters wrote, “Now that I know it’s the nervous system, anytime I have feelings of anxiety, I get more anxious because I know that I am harming myself?”
So, yeah. What is your advice for people now anxious about being anxious?
Connie: Yeah, that’s more common than you know.
Once we start to understand what’s happening, it’s not uncommon that the brain then gets afraid of that and says, “Oh no, this is bad. Oh no, I shouldn’t be doing this.”
First and foremost, know that you can’t control it. It’s a pattern that your brain and nervous system are in. So just like the brain gets re-patterned with chronic stress and trauma, so does the nervous system, and it goes into those old patterns, and that’s not your fault.
You can’t stop it, but you can change it over time.
And so it’s going to happen. It is.
And the more that you can remind yourself, “I’m safe, this is okay, what can I do in this moment to change this pattern? But it’s okay. I’m not damaging myself. I’m not harming myself.”
Liz: Powerfully stated, I’m safe. I’m not harming myself.
Liz: So yeah. What inspired you to want to help others? When did you make that decision?
Connie: Truly, when I was at the in-person program for DNRS, that’s when I was like, “I wanna do this. This is the coolest thing I’ve ever seen. I’ve never been able to create changes like this as a chiropractor in this amount of time.” So that’s when I just knew that this is what I wanted to do. And I think for me, just my whole professional life has been helping people.
So, I don’t even know what I would do otherwise cuz that just feels like just such a natural fit for me. But yeah, that really was the moment when I went, “Oh my goodness, I wanna do this.”
Liz: So can you tell me more about the work you do to help other people heal from chronic illness?
Connie: Yeah, absolutely. So I work with people one-on-one as well as in group coaching.
And I bring in not only brain retraining, but also polyvagal theory, somatic work.
I also bring in other regulating resources that are bottom up, so body up to brain regulating resources.
And I also have a class that I’m putting together for friends and family so that they can understand.
One thing I think that’s so challenging for all of us is we’re so misunderstood and our friends and family just don’t get what we’re doing.
So I’m putting together a class. I had a couple live classes that went really well, and one of the things that I realized is that people are much more likely to agree to do it if they can do it when they’re free, not at a set time.
So I’m [also] putting together an on-demand class so that friends and family can learn about what brain retraining is and why there’s these weird requests that sometimes we have.
Liz: Yeah, because one of the rules of DNRS and some other brain retraining programs, as well, is sticking to positive topics, not watching the news and stuff like that, and not talking about health.
And yeah, I remember crafting that email to my family or, and I even remember like yelling my friends harshly on in a text message, like, “I can’t talk about your bronchitis right now” or what have you.
It really makes for some awkward conversations, but it did help me personally when I set those boundaries. I think it was also just the act of setting boundaries because I don’t think I had many of those in my life as well.
Connie: For sure. Absolutely. And one, I think for most of us, setting boundaries is something that we were not super strong in, and our brain and nervous system like boundaries.
Setting boundaries lets our brain and nervous system know that I come first, not everybody else.
And so that often is part of the healing process.
The other thing that I so agree with is that we often do need to step away from talking about those things, and it often leads to some super awkward interactions.
So having someone else say, “Hey, here’s the deal. This is why they’re asking you to do this. It might sound weird, but here’s why it makes sense,” I think can help with some of those really awkward interactions.
Liz: Yeah. Oh my gosh, for sure. That’s amazing that you’re helping people recover from chronic illness, but also helping the friends and family as well get on board.
Liz: All right, so I do wanna ask, what’s a common misunderstanding that people have when doing a brain retraining program?
Connie: Well, there’s a couple. Some that come to mind are one that it’s not okay to do other things and other regulating resources. I think there’s often this thing of, if I’m doing anything other than brain retraining, somehow it’s cheating or not okay. And I think it’s really important that people know that it’s okay to do other things.
It’s totally appropriate to support your brain and body from a bottom up approach.
Liz: You’re talking about somatics?
Connie: Not just somatics, but even other things. Maybe craniosacral work or maybe Feldenkrais, or things like that where you can bring in some regulation where someone else is helping you do it.
One of the things that I think is fair, like you said earlier, brain training is a lot of work. It is, and I will never sugarcoat it with people. It’s a lot of work. It’s worth it. It works, but it’s a lot of work.
Sometimes it’s nice to be able to go to someone else and say, I’m here, and I’m going to pay you some money, I’d like you to do work.
It’s nice to have some teammates that can do some of that so it doesn’t feel like, “Oh my gosh, I’m the only one dragging this boulder up the hill.” That’s one of the things.
And I think one of the other misconceptions is that people often think that six months is the normal recovery time.
And in my experience, it’s not. Long recovery periods are absolutely the norm, and I really am passionate about normalizing that for people because people always feel like they’re doing something wrong and because it’s taking them longer, somehow they’re missing something.
Longer recoveries are absolutely the norm.
Liz: Well, that is so validating, Connie. Thank you for saying that. And, also, if we’re doing this for a while, it really has so much benefit for our nervous system. So do we even want just a quick fix? Because the work that we’re doing is really like planting seeds every day for our nervous system.
Connie: 100%. And sad to say, it takes time to repattern the brain and the nervous system.
I wish they were fast and quick, but I think that goes back into the whole grit versus resilience.
It takes time to build that new pattern and actually build it without going into fight, flight, and adrenaline to push through.
So it is a process of learning to do things in a regulated way, and that it takes time. It really does.
Liz: So in DNRS and some of the other brain retraining programs, they’re strict guidelines around positivity. Do you find that helpful and have you seen that helpful with your clients?
Connie: Yes and no. So I think in the beginning we absolutely need that. I mean, I know when I started brain retraining, I was like this black cloud that came in and just settled on everyone and everything in the room, and I absolutely needed to go really big in the opposite direction with positivity and really seeing everything in a positive light.
I find the same with clients, that we need to really go big in that opposite [very positive] direction.
That being said, there’s a couple things that I see come into play a lot because of that guideline around positivity.
One, it often makes people think that everyone else is having this easy breezy recovery that’s just effortless and fun, and that is so not true. Everyone has really hard days with recovery, and then I think it’s really important to normalize that so that people understand that that’s normal.
Everyone’s having those hard days.
I also find that as someone moves through the recovery process, that’s starting to bring in some more nuance around challenging emotions is really helpful.
That’s actually something that we just talked about in my recovering together classes last week, is working through challenging emotions. How do you respond when those come up?
And having some more nuance about how we do that, depending on where you’re at in the recovery process, so that you can actually learn how to have challenging emotions and stay regulated so that it doesn’t have to be, “I have to stay a hundred percent positive to stay regulated,” but that I can have some challenging emotions come up because that’s life.
It’s going to happen, and I can do that in a regulated way. So I do see the benefit of it at first. I don’t know that all the way through that it is helpful all the time for people. So I do think some nuance in that conversation is helpful.
Liz: Yeah I love what you said. I think that resonates with me, too.
Yeah. It was so helpful for me in the beginning, but it got to the point where any negativity itself would be a trigger. I’m like, “Oh, that’s negative. That’s gonna hurt my brain.” Versus, you know, having space for that and learning how to create space for those things.
Connie: Yeah, and that’s what I see all the time is that because people wanna heal.
They say, “Okay, I’m gonna do this right.”
And then just like you said, then any negativity becomes triggering, which good luck going out into the world and not hearing something negative. It’s just not really possible.
Liz: Yeah, and it can be an issue too, if you interact with family, anyone. And obviously, I did find it helpful to set those boundaries at first, but then it got to a point where I was like, “Get away from me with your negativity.”
But I still don’t watch the news though. I still don’t watch the news.
Connie: I don’t either.
Liz: Oh, okay. Having been a former news junkie, and I was like, “Nope.” It was a “say no to drugs” kind of thing.
Connie: Yeah, I don’t either. I still like light fluffy shows.
Liz: Oh yeah. What are your favorite shows these days?
Connie: Let me see.
What am I watching right now? I’ve been watching Shrinking on Apple TV. Oh gosh, I don’t wanna admit some of the really embarrassing ones. I do like reality tv.
Liz: Oh, that’s great. Yeah, I haven’t seen Shrinking, but on Apple TV I was watching Ted Lasso.
Connie: Yeah, that’s good, too.
Liz: Oh yeah. There was one question. I don’t know if I’m gonna include this, we’re going on long now.
So how do you retrain mold [sensitivity]? Because I got rid of everything before I discovered DNRS. Which made brain retraining difficult.
So how do you incrementally train on mold?
Connie: So what I did was, I threw away so much stuff because I was told you gotta get rid of everything.
One of the things I didn’t throw out just because I just couldn’t was all of my old pictures. I’m old enough to have printed pictures, so I had this massive bin of pictures that had been in my house, and so I incrementally trained with those.
And at first I reacted pretty quick.
I mean, at first, even just looking at the bin was triggering. So I just started with that. And then gradually worked my way up.
But I found that helpful because it was fun and it got me involved in looking at, you know, silly hairdos from the eighties and remembering fun times instead of thinking, “Oh my gosh, I’m touching this picture that I was told I shouldn’t.” So that’s what worked for me.
And I often tell people that if you have belongings from your old house, hold onto them. Those will be absolutely invaluable to train with down the road. Don’t get rid of them. You can train with ’em.
Liz: Yeah I wish I had seen that before. Yeah, I had seen your video a month after I got rid of everything.
But yeah, I think…Oh, actually my husband had secretly saved some stuff, but it was long, long after I healed. So I have the bin, and there’s funny things in the bin and pictures, and [there is a video somewhere] I’m just like going through this bin of things that I didn’t realize that he’d saved from the moldy house, but it was just like, I didn’t react whatsoever.
I was laughing the whole time.
Connie: Oh, that’s so great. Yeah. Was it like you found a treasure box or something?
Liz: Yes, it was a treasure box. It had some CDs with the funny things I had on the CDs. There was like old photos and things like that, things that I had framed. There was just a lot of stuff that brought me joy. So I was just like [smiles].
Connie: Oh, that’s so great, so special that he saved that, that’s wonderful.
Liz: Yeah, I, and I had no idea because he had tried… Yeah, there was a whole thing around that [laughs]!
Liz: All right, so can you just talk a little bit about how you’re living your life now versus how you were living before and during the illness?
Connie: I still have a brain and nervous system.
Yes, I’m healthy and well, and my body’s not a machine.
So I really do try and live life with more balance in mind. Just being more mindful of work life balance and what my schedule looks like and taking time for self-care. I still very much have to be mindful of pushing through because it’s just…it’s such a comfortable pattern for me to fall back into because I know that again, it comes at a cost, and you can only do that for so long.
Liz: Yeah. And what are some of the things that you enjoy doing besides your guilty pleasure shows?
Connie: Well, one of the things that I love doing on the weekends is I volunteer at our local animal rescue. And so I go get one of the dogs and I go for a hike.
And that is absolutely one of my favorite things on earth. I love hiking, I love dogs, and there’s nothing better than taking a dog for its first hike or taking it to a creek for the first time, or watching a dog that’s really shut down and scared start to come out of their shell and get playful.
And that’s one of the things that I absolutely love doing.
Liz: Oh I love that, Connie. That’s so amazing. And that’s so beautiful.
Connie: People probably get tired of my Instagram feed because it’s a lot of dog pictures, but that’s the best. I try and post one every weekend of whatever dog I went out hiking with, and sometimes it’s a silly video.
But yeah, that’s one of the things that I just, I love doing.
Liz: Yeah. So how can people find you or follow you?
Connie: Sure. So my website is conniebcoaching.com. I purposely left my last name out because it’s a mouthful. And on Instagram, I’m @conniebcoaching.
Liz: Where we can follow along to see your wonderful hikes with the doggies!
So what is your final message to people watching today?
Connie: Yeah. Well, I think the biggest thing is that you really can heal no matter how long you’ve been sick or how many diagnoses you have. And I know that sometimes that path out of that is not clear. And so it’s so helpful if you can get support, if you can get community through that process, because often when we’re in the thick of it, we can’t see the path out.
So working with someone and having community with people that can help you find that path out can be so, so supportive
Liz: Thank you so much for sharing the wisdom that you learned the hard way with us today.
Liz: This is so wonderful, Connie. Thank you so much. I related so much to your story.
And I remember another thing that kept me going was you had shared this squiggly line of, “you think recovery’s gonna be like this [makes a 45 degree angle with hand], but it’s actually like this [makes a squiggly line].”
And that kept me going through the difficult times and gave me faith because you were up there and you were so confident, you were like, “Here was where I was.”
I think you even had a mask on at some point, before it was a thing. And then you’re standing up there, you’re looking so radiant. And I was like, “This is it for me.”
Here is my own rendition of the “Expectation vs Reality” graph that Connie had shared in her DNRS testimonial that kept me going:
So I just wanna say thank you for shining your light and for your powerful wisdom. And yeah, you were a catalyst for my own recovery. So thank you!
Connie: Well, Liz, thank you so much for sharing that. It means more than you know, really. It was a big decision for me to post that video because I am fairly private and so that was the first video of me online ever and what helped me get through my stuff around that was just – if this could help anyone.
So thank you for sharing that. It really does mean a lot.
Liz: Yeah, it certainly has helped many people. Thank you so much, Connie!
Connie: Thank you so much for having me. It’s really been a joy to talk with you today.
Liz: This is still so surreal! It hasn’t sunk in, but I’m so glad we could do this.
Connie: That’s so nice of you. Thank you.
And I think I said an email, but I’ve heard about you over the years from people and just how much they enjoy your YouTube channel. So it’s been a treat to be on it. It’s like, “Oh, I’m gonna be on it. I’ve heard about it for so many years. This is cool. Oh, that’s great.”
Liz: Oh awesome. All right. Take care.
Have a good rest of your evening over there.
Connie: You, too.
Liz: Bye Connie. Take care.