Episode #123: Jamie Nicole
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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Jamie Nicole is a certified health coach dedicated to helping individuals achieve optimal health through complementary medicine and holistic healing. Her passion for health and wellness was sparked when she witnessed the transformative power of holistic healing in her own life.
Jamie was diagnosed with Hashimoto's Thyroiditis in 2015 when, no matter what she did, she couldn't seem to lose weight. But that was just the beginning of her path navigating autoimmune disorders and the effects of their often debilitating symptoms. Only a handful of years later, Jamie fought to get a narcolepsy diagnosis after stepping down from her management position due to extreme and persistent exhaustion and brain fog. In an effort to take her career into her own hands, she started her practice focusing on autoimmune disease, only to realize that most of her clients didn't look like her because they couldn't afford to hire a coach.
Having experienced the full spectrum herself (living off WIC, food stamps, and food banks to making a six-figure salary and being able to shop at Whole Foods), she decided to put her money where her mouth is and began engaging in and leading conversations around the experiences of other BIPOC individuals suffering from autoimmune diseases. She launched the AIP BIPOC Network and AIP BIPOC Community to support those living with Autoimmune Diseases to have the support she didn’t experience as a woman of color.
In this episode, we also explore the often-misunderstood connection between autoimmune illnesses and depression, as Jamie reveals how societal interpretations of our limitations can contribute to deep emotional struggle. Plus, we delve into her personal experience of letting go of her previous life expectations as she candidly describes the process of "dying to oneself" when faced with unexpected circumstances. Jamie's story offers hope, understanding, and inspiration to those going through their autoimmune journey, as well as much-needed awareness around the experiences and limitations that many BIPOC experience with healing.
“I knew about my experiences with doctors, but it really hadn’t hit what an Asian person may go through. What a Hispanic person may go through. And so those conversations were very eye opening for me.”
Reasons To Listen:
How being a Type A personality affected Jamie's health from overworking, not sleeping properly, and putting herself in high-stress situations.
What it took for Jamie to get a narcolepsy diagnosis when doctors didn't take her seriously, trying to push medications rather than addressing the root cause.
Recognize how the depression that often accompanies autoimmune illnesses isn't necessarily from the symptoms but from the way others interpret what we can and can't do.
Learn from the experiences and interactions that deepened Jamie’s awareness of the systemic issues keeping BIPOC individuals from seeing doctors, getting a diagnosis, accessing treatment, and buying clean, healthy foods.
Gain a better understanding of what it means for each of us to have different access, and how circumstances can cause major limitations that aren’t always obvious when we haven’t walked through them ourselves.
“Depression and anxiety are symptoms of a lot of chronic illnesses, a lot of times, it’s not even from the illness itself, it’s from the repercussions of dealing with family and friends who don’t understand, and then their feelings start to impact you mentally.”
Check out past episodes about Hashimoto’s Thyroiditis and Autoimmune Disease:
About Jamie
Jamie Nicole is a highly regarded certified health coach, dedicated to helping individuals achieve optimal health through complementary medicine and holistic health lifestyle changes. With years of experience in the health and wellness industry, Jamie has honed her expertise in the areas of autoimmune health, hormone, sleep, and fitness.
Jamie's passion for health and wellness was sparked when she witnessed the transformative power of holistic health in her own life. This experience inspired her to pursue a career in the health industry, and she obtained a health coach certification from the Institute of Integrative Nutrition and subsequently became a certified autoimmune coach.
Over the years, Jamie has gained a reputation as a trusted coach who works closely with her clients to create personalized wellness plans that align with their unique needs and goals. She uses a holistic approach that emphasizes the importance of education & advocacy, a healthy diet, safe movement, and mindful practices.
Jamie's coaching style is supportive, compassionate, and results-driven. She is committed to helping her clients achieve their health goals and is known for her ability to motivate and inspire. Her clients describe her as an excellent listener, knowledgeable and approachable.
When Jamie is not coaching or teaching fitness, she is working as a Board member at her local Federally Qualified Health Center and other local advocacy organizations to help address the Social Determinants of Health that are barriers to all persons receiving adequate healthcare and she enjoys staying active through activities such as running and playing tennis.
Links:
“I can’t take it away. It’s chronic illness; it’s irreversible. But if I can do anything to make that burden a little lighter for somebody else than it was for me, then that’s what I’m going to do.”
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Harper Spero (00:04):
Made Visible helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
Harper Spero (00:25):
Please note this podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a license or registered healthcare professional about your individual condition and circumstance. Hey guys, welcome to another episode of Made Visible. I'm your host, Harper Spero, and I'm so glad you tuned in. Today's episode is with a powerhouse woman that I'd never spoken to before, but was so happy to connect with Jamie Nicole is a certified health coach and the founder of AIP BIPOC Network and Community. We talk about the rollercoaster ride she's been on with her health and life and how she's determined to give back to the people who can benefit from her knowledge and care now. Welcome Jamie.
Jamie Nicole (01:13):
Thank you so much. It's a pleasure to be here.
Harper Spero (01:16):
Awesome. So let's start off, tell us who you are, where you're from, and what you do.
Jamie Nicole (01:22):
Awesome. my, she said my name is Jamie Nicole. I am a certified holistic health coach, autoimmune coach. I'm also a fitness instructor, a newly empty nester. I have two kids, a boy and a girl who have graduated. So at this point in my life, I'm also redefining who I am and what I do. So I'm looking forward to that over the next few years. I'm also the founder of the BIPOC network, so that's autoimmune protocol, black indigenous people of color network. I found it last year.
Harper Spero (01:55):
Amazing. And where are you based?
Jamie Nicole (01:57):
I'm based out of Houston, Texas. Born and raised.
Harper Spero (02:01):
So let's start off, you were diagnosed with Hashimoto's thyroiditis back in 2015. Mm-Hmm. <affirmative>, can you speak a bit about what led to that initial diagnosis and how you got diagnosed
Jamie Nicole (02:13):
Harper, lemme tell you, it's an interesting story. Like most people, I was just trying to lose weight, right? I was, had just moved from college, got my first job out of college, was moving up the corporate ladder. Now mind you, by this time I was already married, divorced with two kids in college, right? So all my time and energy had been focused on that. When I moved back to Houston from Austin, where I went to school, you know, I'm getting my house, I got my job, everything settled. It's time to work on me Harper. But like most people, I was doing everything I thought I was supposed to do. I was, my calories in were less than my calories out. I was working out five days a week and I still wasn't losing weight. So I was following someone online who said, if you're doing all that, if you think you're doing everything right, get a couple of things checked.
(03:02):
One of those things were your hormones. So the type A personality that I am, did a lot of research, went to the doctor with my binder. Originally I thought it was P C O S and the doctor that I went to did as well. But it turns out I had Hashimotos, which is a thyroid issue that impacts my weight. Luckily, I did a lot of research on the doctor because I heard a lot of people have issues getting a diagnosis and she specialized in hormones. So, unlike a lot of people who have chronic illness, invisible illness, I was able to get diagnosed with that first, my first one in 2015 right away. And then four years later I was diagnosed with another invisible illness. Another chronic illness.
Harper Spero (03:46):
Yeah, I mean, it is really rare, especially hearing stories on the podcast so frequently of how many years it takes for people to get diagnosed. We've had a few guests on the show that I wanna give a shout out to who also have Hashimoto's thyroiditis, one of whom refers to it as the Hashi Posse, which I just love <laugh>
Jamie Nicole (04:07):
So much.
Harper Spero (04:08):
So that's Phoebe Laine, and that was episode number four. And then Genevieve Borer, who also is Hashimotos is episode 29. And then the person who co connected us is Mickey Trescott, which is episode 65. So if you wanna hear other stories of people living with Hashimoto's thyroiditis, <laugh> you can go back and check out those episodes. So what was that like once you received that diagnosis? What happened in your life next? What did that look like?
Jamie Nicole (04:39):
Well, it was sort of an awakening. I had been following a couple of people, online health experts. A doctor just gave me a prescription. She told me to take, I believe it was Selenium, and that was it. So again, being the type A personality that I was, or still am, I did my own research, found out some dietary changes that I needed to make, and then within a short period of time, the thing that I was concerned with at the time, losing weight, I was able to lose weight. But not only that, I felt amazing in a way that I had not experienced before. So I always tell people when I'm explaining this, it's alwa If you, if you have glasses or contacts, sometimes, you know, you can't see that well, but you don't know how bad your vision was until you got glasses. Like, oh, that was, that's how I'm supposed to see.
(05:29):
It was, that's how I'm supposed to feel. So for me, I didn't, I don't think I told you this, <laugh> at the time, I was an internal revenue agent, didn't like the job. I was in <laugh> Yeah, for large and mid-size business down here in Houston. Oil and gas reading, you know, coding law all day. That was my life. And so I was asking, I'm like, this is not my purpose. This is not my passion. And so when I was able to go through, make those dietary changes and feel good for, I'm like telling everybody like, you know, here's the good news. You don't have to feel bad, because I have felt like that going back in retrospect since high school. But here's what happened. I thought I was a magic pill. I wasn't a health coach yet. I started getting my certification. I was still learning.
(06:14):
I wanted to learn as much as possible so I can effectively teach others, right? I thought I had found my passion, but then I went back into some of the same habits that I had before that a lot of people I've found with chronic illness, autoimmune disease, have overworking, not sleeping properly, putting yourself in high stress situations. Again, that type a personality. And so I began to have some of the symptoms. Again, I was tired all the time and couldn't figure out why. And luckily I was going back to the same doctor and she was doing lab tests, but she also had a sheet that she had me check for my symptoms, right? A lot of doctors don't do that. Every single time I went Harper, three checks on the tiredness, three checks, you know, everything else was, you know, fine. But I was exhausted.
(07:00):
So it was around, I believe it was 2016. So from 20, what was it, 2007 to 2013, I had made my way up to management symptoms started getting worse, right? 2015. Diagnosis felt good for a while. Symptoms started getting worse. I stepped down from management because my employees would be in my office. I'm not sure if you've ever had this experience where somebody is talking to you and you hear them, but you don't understand anything that they're saying. And so I went through a serious <laugh> that brain fog is so bad, you're like, and you don't want anybody to know. And at that point, again, I had Harper only had my first diagnosis. I didn't know what was wrong with me. So luckily, again, I was able to get the Hashimoto's diagnosis quickly. But the other one I was, it took forever. So I went through an Epstein bar flare.
(07:51):
So I thought that's what it was. Got on antivirals for that. Then I thought it was fibroids that was causing me to be tired all the time. This is, again, 2016. I am at this point going to the doctor every six months doing what you think you're supposed to do, following up until, until it becomes a point where I'm in the office and I'm crying, right? I had to step down for management, but I still had that pride where I didn't want anyone at the office to know what I was going through. And then it was hard to explain Harper. And I think a lot of people go through this with chronic illness. And I'm still even after diagnosis, even after being educated, even after training, still going through this. And it's very mental where people don't believe you. They just tell you, oh, just get some more arrest.
(08:39):
And I had to explain to the doctor when I was in there crying the last time I was like, look, lady <laugh>. That's, at that point, it wasn't doctor anymore. I'm like, look, <laugh>, I need you to help me. You're my only hope. I was in college full-time, working full-time, supervising people, married, divorced with two kids, with no family. I know what tired is. This is beyond that. This is beyond that. I know my body and this isn't regular tired. I'm, I'm waking up in the morning in tears, in tears because I know I can't make it into the office because I can't drive that far, especially in traffic. And even when we are on quarantine, I had it in my mind again these three years because I'm Jamie, because I was a supervisor, that once I found out what it was, cause I can't fix it unless I know what it is.
(09:30):
And I'm, I'm always gonna be able to fix something in my mind. Then I, I, I can't tell my boss, I can't put a plan of action in place. I can't do anything. So even on, in quarantine, walking from my bedroom to my office, when I had gotten so behind on work, hyperventilation, full out panic attacks, something that I had never happened before, just because I felt isolated. I didn't know what it was. I was trying my best. So it go, goes from a health issue to a resource issue. I had started doing things on my job that were considered fireable offenses, right? If I lose my job, I don't have insurance. If, if I don't have insurance, I don't have medication even for the Hashimotos, and I can't figure out what's wrong with me. So this long story short, she was like, well, I think you have narcolepsy.
(10:24):
And I'm like, in the back of my mind because that's so, that's so rare, <laugh>, it's so rare. And then, you know, in the back of your mind, you see what's on on tv. You don't think it's that. And even when I got in my mind, I'm gonna go ahead and make the appointment. And I'm, especially now, I know a lot of people are experiencing this. You can't get an appointment for like six months out. So I set the appointment in December of 2018, and it wasn't until April of 2019 that I was able to get an appointment in May, I was able to get a sleep study. And so I think at the end of May and the beginning of June of 20 19, 4 years later from my original diagnosis, I get diagnosed with the narcolepsy, which is also a, a autoimmune where my body is just attacking the chemical in my brain that's regulating my sleep cycle. So in a nutshell, <laugh>, long story short that that's part of what my journey has been.
Harper Spero (11:21):
Wow, that is so wild. You also did such an incredible job at telling that story and building up to the narcolepsy <laugh>. I'm like, I know this, but wow. I think it's really common, unfortunately, for people in the invisible illness space to understand what it's like to not be believed by doctors and doctors, to not take it seriously and just sort of plant you with medications and assumptions of what they think it is as opposed to running proper tests. What was that test? Was it the, the sleep study that had you diagnosed with narcolepsy?
Jamie Nicole (11:57):
As a part of the process, you have to go to a sleep study facility and they put all of these wires all over you. And so at night they test you for sleep apnea had no issues with sleep apnea. They test for the narcolepsy, they wake you up early in the morning, 6:00 AM and then every two hours on the hour, they make you take a nap for 15 minutes. And so imagine if you say the, the main symptom for narcolepsy is the excessive daytime sleepiness. So even after a full eight hours of sleep, you staying up in between because they don't let you go to sleep was horrible. So they monitor you those five times, 8, 10, 12, 2 and four to see how fast you can go to sleep. And they're looking at a couple of different things. The first thing is how fast you fall asleep. The second thing is how fast you go into r e m sleep, the deep sleep. So on average, a normal person takes about 10 minutes to fall asleep, about 90 minutes to get into that first rim sleep. Me on average, a, except for the first one, which it took me about two minutes, 30 seconds to fall asleep.
Harper Spero (13:10):
Oh
Jamie Nicole (13:10):
Wow. Compared to the 10 minutes. And then it took me about 10 minutes compared to 90, 50 to 90 to go into REM sleep. And so how does that, how does that impact you as someone who has narcolepsy? Even if you take a short nap, as I often did unintentionally at work, <laugh>, you wait 20 minutes, I can be in such a deep sleep and have such lucid dreams that I don't even wake up refreshed because I'm having a full on sitcom while I'm taking a nap because it takes me 30 minutes, 30 seconds to fall asleep and only 10 minutes to get into deep sleep where you have those very lucid dreams. And sometimes it gets so bad that I can even control my dreams. And that one time I was just like, Jamie, I was asleep in my mind and I'm like, Jamie, you know you that you're dreaming, but I was so busy trying to act out.
(13:57):
You know how you have those dreams that are interesting? Oh yeah. That, that <laugh>. So that really like happens to where you're, yeah. Yeah. So you don't get good sleep sometimes even when you're asleep or able to sleep. And then the other part of that was people don't understand. It's not like you see it on tv. I have excessive daytime sleepiness, but I have insomnia at night. So basically I, it's not that I don't sleep, my sleep cycle is reversed. So there's no way sometimes if I'm not getting us to sleep until 8:00 AM in the morning, that I can drive myself to work in traffic. So again, problem is I can't function normally, even sometimes to take myself to the doctor. I couldn't drive depending, because I was making my appointments early in the morning, not knowing that it was narcolepsy, not putting together, I'm excessively tired during that time.
(14:44):
So I would oftentimes miss doctor's appointments that took six months to get, which delayed the diagnosis. This was before telehealth. Thank God for telehealth now. But, but imagine, wow, going through all of that. It's just, and you, you mentioned something earlier about doctors not understanding. I think really it's not just the doctors. What's worse is your family and friends and your coworkers. Right? Because some days I'm good and when I'm good, I'm good. I mentioned earlier that I taught fitness and sometimes, you know, I always say this, God will save me before, you know, you need a saving. I became addicted because people don't understand, like the endorphin is from working out. That was the only time I felt like myself. So I had started teaching about five times a week in spite of joint issues. I was having that endorphin rush was like, okay, I finally feel like my normal self.
(15:40):
Which by the way, I hadn't felt like in so long because after realizing I had narcolepsy, I realized I've had these symptoms since high school. I had mono, I'm not sure if you know what that is. In the ninth grade, it's the, the Epstein bar, which is known to trigger autoimmune diseases. And so some of the sleep symptoms, I was harper, I was popping no dos in high school. Like they were tic-Tacs. Wow. Wow. I was drinking. Cause you know, people, your Orange Lo, I was drinking Geritol straight from the bottle. So I know this is something that I, I know I was lucky with the Hashimotos, the narc, the narcolepsy, I have to say, has been more of a detriment to my life than Hashimotos could ever be. And still to this day, it's harder to explain. It's almost like you have to guard your life.
(16:34):
So people don't make assumptions because they're harsh. Oh, I came to your event, you can't come to mind. But they don't understand that I was in the middle of a flare where I was tired and I actually couldn't physically be there. And so you start losing friends over things that you can't even control. And so even though like depression and anxiety are symptoms of a lot of chronic illnesses, a lot of times it's not even from the illness itself. It's from the repercussions of dealing with family and friends who don't understand, and then their feelings of unappreciation or your own involvement start to impact you mentally. And so I just have a heart for others who have chronic illness because I know there are a lot of people who are like you and I, who don't think people understand are keeping these things to themselves.
(17:29):
That really a space like this, even this podcast of letting people know, of, making people visible, of making people understand is not just for people who have chronic illness, family members, people have lost relationships, husbands have divorced wives because they don't understand the dynamic of having a chronic illness. And sometimes you can and sometimes you can't. So I applaud you even for doing this podcast and allowing people to share their stories. Because oftentimes we don't, oftentimes there's not a safe space for us to do. So even when posting on social media, it is, it is just like, I hear what you're saying, but I see something differently. So I don't believe you. So I applaud you for doing the podcast.
Harper Spero (18:12):
Thank you for saying that. And thank you for bringing up that concept because I think you're right that mental health issues do often begin from people living with chronic illnesses in just navigating their lives. That it's not necessarily stemming from their condition or a side effect from a medication they're on, but the navigating the people in their world. So I really appreciate you bringing that up. And I know that it's such an issue amongst this community. You bring up so many amazing points and I'm so curious to know, in receiving that diagnosis, how did it then lead to you pivoting to becoming a health coach and taking your career into your own hands?
Jamie Nicole (18:56):
Again, part of that was that I was at the I r s, but it wasn't my passion. And then it became difficult to do, like I said, the narcolepsy had more of an impact on me being able to function than the Hashimotos. So again, passion and necessity, I wanted everybody to feel like I felt, I felt there was a lot of information that was out there that wasn't given by doctors, people who don't have the personality or the energy. I caught the Hashimotos early, luckily, but they may not have the energy, they may not have the resources to do the research that they need to. The other part of that is I couldn't do my job effectively anymore, which is another issue that I often talk about. People with chronic illness have to go through this process of dying to oneself because how you thought your life was going to be.
(19:46):
I thought I was gonna move up the corporate ladder. I thought I was gonna be, you know, be an executive. I was well on my path there until my body right told me that you weren't gonna be able to do so. And first anybody to tell you what you're gonna do or not going to do is an issue. But it was my own body and I couldn't control that. So I, I couldn't sit there, I couldn't read case law. Maybe if I had another job where I was walking around, maybe I was a nurse, I could have, but I couldn't do that job any longer effectively. Then it kind of pivoted. I became a health coach, I decided to focus on those specifically with autoimmune disease, narrow down my niche. But then I started seeing that my clients didn't look like me at all because they couldn't afford my services.
(20:32):
Not that they were astronomical, but they just couldn't afford my services. And then it was around the time you said, you mentioned Mickey earlier, it was around time with quarantine. Harper was following all of these people, online health professionals who were giving health information, good information. And then when the tide kind of changed during the whole George Floyd thing, I kind of saw some different vitriol online where it was like, your health issues are your fault because you don't buy food from Whole Foods. And literally had a basket of Whole Foods shaming people as though, as they, that they, if they had a choice, they wouldn't choose healthy food. So what I didn't mention, but at a time I was also on wic, I was also on food stamps. I was also having to go to food banks. I was also having to go to, you know, churches who gave out fans to reduce my bills.
(21:31):
It wasn't that I wasn't trying, I was getting my master's, but there was a period in my life where I had no options. So, so I see things going from that to a six figure job. W going to Whole Foods. Now I, I know the in complete spectrum, so I know it wasn't the case. That was part one. Part two was everything went online. And so people were, had to ship from, you know, in-person conferences to online conferences. And so when I would see the, the pictures, the advertisements online Harper, I would look and I was like, I don't see one person of color didn't even have to be black Harper any person. And so I'm thinking to myself, if I'm looking online, I'm trying to reach out and see, get information about health, I'm more likely to reach out or follow someone who looks like me.
(22:21):
So there was a gap that needed to be filled 2020. So that's also the same time that I saw the, that BIPOC scholarship that Mickey and Angie of Autoimmune Wellness were doing. And I got certified to become a A I P coach. Now I did a little research and saw that they had partnered with the AIP Summit and they had people of color on their flyer. So since I saw Mickey, and again, at this time, let me just go back a little bit. I was starting to feel good. I got my diagnosis in 2019 of the narcolepsy. Went through a whole year of trying to figure out medications. As I'd say in all of my, the round tables that I do, I just wanted to drink water and mind. My business finally just WSA for a while because the process of getting that diagnosis was draining.
(23:09):
So still wanted to do something, got the certification, got the scholarship. But I saw Angie and Mickey, they were putting their money where their mouth is as far as providing BIPO scholarships, having a bipo business plan, advocating and elevating people of color so that they can get more of an awareness for the communities who needed it the most. And so when the AIP summit came around, I was like, okay, Jamie, put your money where your mouth is. You have to quit drinking your water and minding your business and actually do something. And I say this loosely in, in, you know, tongue in cheek, if these white ladies are out here advocating for your people, then why can't you? Spirits started to talk to me. So I'm like, okay, I'll do the, the summit. So I did the summit and as a part of the summit they have these bipo affinity round tables where we had, you know, coaches, people who had, can you
Harper Spero (23:59):
Get into that? Can I just interrupt you and ask you, can you define what a I is for people who don't know
Jamie Nicole (24:05):
AIP stands for autoimmune protocol or autoimmune paleo. BIPOC is black, indigenous, and people of color. And we use that term to kind of distinguish that the experiences of black people and indigenous people are a little bit different than grouping them all into people of color. So Jamie Hartman, who is over the AIP BIPOC summit, included a BIPOC affinity round table as a live conversation during the week that the summit was played. And so we had Asian people, Hispanic people, and black people all on this panel. So just to have a conversation, it was no specific topic. And I always say this, you only see things through the lens of your own perspective, right? So I'm a black woman, I know about my experiences with doctors, but it really hadn't hit what an Asian person may go through, what a Hispanic person may go through.
(25:02):
And so those conversations were very eye-opening for me. We have different experiences, but they're similar in a lot of ways. And it was such a powerful conversation. And afterwards, again, I'm new to the summit, new to being a A I P coach. I was like, that conversation really needs to be had, right? And so I mentioned earlier that I'm an empty nester. That was the year my daughter was gonna graduate. I was finally feeling good. Harper got my medication right for the narcolepsy. A period of 20 years of my adulthood really, where I don't even know who I am as a person. I have kids, I have chronic illness, Harper, to this day I'm gonna plan one this year I have not been on a real vacation because my symptoms were so bad. I was like, why would I go and pay money for a vacation?
(25:52):
And I can't even enjoy it because I'm sleeping all the time. So after the round table, I'm like, okay, I'm gonna continue to mound my business and drink my water. I did my little piece, but something kept bothering me, right? So I reached out to Jamie Hartman. Long story short, again, just to ask, is anybody continuing with this conversation, this round table? I didn't wanna do it Harper <laugh>. I wanted to help support <laugh>. If anyone was, if anyone was doing it, I would help support. Cause I still, my daughter's about to graduate emptiness, drinking my water, minding my business. And so she said, no, if you wanna do it, you can have full access to my platform because she's been doing the summit for years. You know, she has a reach, she already has an audience. And so I was like, well, I guess so <laugh>.
(26:41):
So that, I guess this is meant to be, this is something that I'm supposed to be doing, putting my money where my mouth is. And if it, if there wasn't a space, if there wasn't a need, if somebody was already doing it in the autoimmune space, I would not have done it. I would've supported. So we had our first round table in June of last year introducing what it was. And because of the work that Jamie and Mickey had been doing already, they were on listening to it. They heard what I was putting together. They found that it was something that they could, they could support that was in alignment with what they were already doing with their organization. So they became a sponsor of it. And ever since then, between the contacts that they have provided and the information and the resources, it has taken off more than I ever expected.
(27:29):
From the first conversation, first round table that we had, it was discovered that we needed to have a community, an on an online, offline community. I say, because oftentimes you go to the Facebook groups, you have a bunch of people on there who are just trying to, again, you know, find a community that understands, but sometimes it can be become depressing with the stories. Sometimes not accurate information is given. And then sometimes, again, we talk about those things that are different for black and indigenous people. So you log on and you seek police brutality, you see all these other things are kind of triggering and causing trauma that could also add to the burden of your autoimmune disease causing, you know, stress-induced flares. So we decided to have an on an offline online community on the Mighty Networks where we can continue the conversation, where we can also provide resources.
(28:19):
Because what I didn't want to happen is that we come here once a month, we have a little conversation and then nothing is impacted. I feel as though, and this is the way I cope with things, because remember I told you it was a time where I was having panic attacks, I was depressed. I would wake up every morning Harper crying like, God, these are not the promises that you have in the Bible for be like, why are you putting me through this? Help me find a solution quickly cuz I don't know how much longer I can hang on. It was to the point Harper, where I was like, I don't wanna kill myself, but God, if you came right now, I'm so tired, I am ready to go. And so for me, being able, and I don't wanna get emotional being able to do the round table, it was a purpose for me going through that.
(29:11):
And it, he wasn't just putting me through that to be mean or, or spiteful. It was a purpose because, because I went through that, I know how other people feel. I know how this impacts you in your relationship with the doctor and why you may not want to go to, I don't know why I'm crying, and why you may not wanna go to the doctor anymore. Why you, why you may be depressed, because of the relationships with your family who don't understand or feeling bad because you can't show up in your kids' life the way that you want to. I understand that from a place of, I experienced that so I can relate to others on that level. So now I know how it feels and now I know what resources I need to provide you so that your experience, I can't take it away.
(30:01):
It's chronic illness, it's irreversible, but if I can do anything to make that burden a little lighter for somebody else than it was for me, then that's what I'm going to do. And so from the round tables led to the community led to us creating a nonprofit. So again, we can really have impact. That type A personality is paying off even in this, because I don't want to sit around Kumbaya tell you what the problem is and not giving you a solution for it. And it really has to be a top down, bottom up approach, top down legislative, you know, our medication shouldn't be costing the, the astronomical cost that they have. There's a bill right now in, in Texas, I had chiropractor, I have been on the phone with my doctor in tears over these pre-authorizations where they, the insurance didn't go through, they're back and forth with the doctor.
(30:49):
The insurance didn't do what they're supposed to do. Meanwhile, I'm on narcolepsy medication, which I can't function without. So now because there's a shortage in the medical field, I'm on the phone with my doctor's office. It's not their fault just to talk to someone to help fix my problem 45 minutes. I have the ability to do that right now Harper, because I'm working for myself. But imagine if you are someone who works. Imagine if you are a frontline worker, you can't take that time. There's so many other barriers that people experience that are far worse than mine then I'm not, I could not imagine. And the fact that it impacts people of color so much more, especially with long covid. And now we're seeing that people are having the same autoimmune symptoms with long covid and they're having the same issues with their doctors. The time is now. There is a need. And if I can do anything again to help fulfill that need, I'm all for it. I wake up every day thinking about it. It's my passion, it's my purpose, and I enjoy every bit of it.
Harper Spero (31:50):
Wow, Jamie, your story is so powerful because it's such proof of you being this type A personality, as you said, and realizing the power that you could have, the impact that you could have on a community. And thinking about how personally you felt like, how am I working with clients that don't even look like me, that I can't really represent. And then to build this network and community and realize the power that you can have in making people feel connected and people feel seen and providing resources. And you bring up such a good point. We've had past guests on the podcast and I've had many conversations around community, around in invisible illness, chronic illness, mental illness, specific conditions. And one of the challenges I personally have come across is that they all become really depressing. Mm-Hmm. <affirmative>. And it doesn't feel like the common connection is benefiting everyone in such a positive way.
(32:53):
Mm-Hmm. <affirmative>. And I feel a little uncomfortable saying it to be honest with you because I think there's so much power in community. But I do think that it's so easy that without moderators, without targeted conversations, without topics being brought up, that really define what conversation should be about, it's easy for people to just get in a black hole of the depress depressing side of invisible illness. Mm-Hmm. <affirmative>. And while I think that's the reality of a lot of people's lives, it is definitely challenging to go into a group and see the kind of conversations people are having and being like, I don't wanna be part of this. These people are sicker than I am, or they have more depressing stories than I do. It doesn't benefit me. Mm-Hmm. <affirmative>. So how do you keep that morale up within your community and ensure that people are supportive of one another and not offending each other or making people feel worse about their situations?
Jamie Nicole (33:52):
Well, I'm glad you asked that question, and I just want to give an example of why this is so important. And just to highlight your point, and also the reason why I'm, I'm passionate about it is not just a healthcare issue, it's a, it's a social justice issue. It's a economic issue, it's an environment issue. And this was, I say bipo, but it's really for everybody, right? Because if you, if you lift the least of them, everybody else will rise as well. But what really put it in perspective for me was that I was in a group for narcolepsy, right? It's hard getting diagnosis. You might not have, you know, access to doctor insurance medication. And one guy said, and I understood this so much, but if I hadn't gone through what I went through, I wouldn't have, he said, don't judge me. The only way that I can cope with this illness is by taking cocaine.
(34:41):
And I was just like, it kind of jaw dropping moment, but I really, if you don't understand it would've, my thought process would've come from a place of judgment. And I think a lot of people don't understand that if cocaine and drugs is easier to get than a doctor's appointment, a doctor's visit, prescription medication and mental healthcare. If it's easier to get, because mind you, like my situation, I was blessed to have a government job and a union. If you don't have that, there's other repercussions. If you don't get your diagnosis, I can't work, I can't feed my kids, I'm gonna do whatever it take. If that means that I need to be on cocaine to stay awake because I can't otherwise, then that's what I'm going to do. And this was, again, a white guy. So it has nothing to do with race specifically.
(35:34):
People are just trying to get help. What I like about my community, the community that we're developing, all the moderators are certified a i p coaches. So two things about that. They all have one or multiple autoimmune diseases, so they understand from experience, but they're also trained to help you navigate those lifestyle choices that can make life a little bit easier. We're also providing resources. Some of the things that people will come on the round table and have questions about or people have questions about in general, resources for prescriptions, how to get it if you don't have access to it. We have resources on federally qualified health centers, which people don't know. And I didn't mention earlier, I'm on the board of a federal, federally qualified health center here in Houston that sees you on a sliding scale and can't refuse you if you don't have the money to pay.
(36:30):
So that's another option for you. So we include a ton of resources in that group that you may not get from other groups. And it's accurate information, it's helpful information. And then what I started on the round table was a discussion of brave conversations versus safe conversations or brave spaces versus safe spaces. Letting them know that sometimes on these calls, on these round tables, people of color need to have this space to express themselves without telling you, without someone else telling us that's not our experience. That's not what it is because we can't help fix the problem if we don't understand it. And again, it's, I wanna, I wanna reiterate white people too. And I say this and I always say this on my pocket, if it hadn't been say this on my round table, if it hadn't not been for these two white ladies, I would not be doing the work that I'm doing now.
(37:24):
So it has nothing to do with color. Everybody is needed in this space to do this work, and it's so important. But when we're doing this work, understand, sometimes we have to have those brave conversations that are a little bit uncomfortable. But that's the only way we're gonna need that. We're gonna make progress and see change and see impact in this area. But the time for safe spaces we've created in the community a, a global group where everybody can have the conversation, but we have different spaces. There's a black space, Hispanic space, an Asian space that are moderated by people from those ethnic groups. So if there's a conversation that's uncomfortable, you may not want to have in front of the entire group, they can have them in those safe spaces, those kumbaya spaces, those spaces where I just wanna get something off my chest, this is bothering me, and not feel as though it's gonna be a conflict or make anybody else feel uncomfortable.
Harper Spero (38:16):
Wow, that's so, so powerful. I'm so glad that you came up with that concept. And I'm curious to know if someone is interested in being involved in this community and in this network, what are the qualifications?
Jamie Nicole (38:32):
You just have to care. We have an, and I'm trying to at this point, build ambassadors to share this information because Harper, what I've discovered in this process is that I have to dial it back a little bit and I need all hands on deck. Earlier you had me to describe what AIP is and what BIPOC is. And that was one of the things that I discovered that I was not doing well in the first place when I was doing these round tables. Because you have to realize when you go to the doctor, especially for autoimmune diseases, diseases, there are over a hundred different kinds. That's the first part. The second part is your doctor, your primary care doctor, the first doctor you see may have only had like a 30 minute workshop back in medical school. So they're gonna tell you much like my doctor, did you have Hashimotos?
(39:19):
Here's a pill, take some selenium if that and then go on your way. They didn't tell me it was an autoimmune disease. So I don't know when I'm getting diagnosed by the chance, by the time I get diagnosed after four or five years that it's even an autoimmune disease. So then I have to describe it's autoimmune, autoimmune, paleo autoimmune protocol, even to black people. Sometimes I've had to explain what bipo is because that's relatively new as well. So making sure that we're able to define what that is and get the people the right information is so important. What I'm seeing is the non bipo community understands that more than the bipo community. So they're all on top, which is part of the problem I was trying to solve in the first place. So I'm trying to get ambassadors to, and all you have to do, fill out a form, sh when I have a post share it.
(40:13):
If you go out, talk about the community with others. So they'll, so they'll, they'll be aware of it. Because so many people don't know about autoimmune disease, they know about lupus, they know about Hashimoto's, they know about rheumatoid arthritis, but they do not know that it's an autoimmune disease. So when I have a name a i p, that's one part of it, autoimmune disease, okay, I'm getting a little bit better, but they still don't know what that is. And, and they, they don't know that I can help them unless I do a better job of number one, describing what that is, the importance of it, and getting all hands on deck with ambassadors to help spread the word. So if I can do anything this year, that's one of the things I wanna focus on, is spreading the word about what we're offering because it's, it's something that's not out there and it's something that is much needed.
Harper Spero (40:56):
I also think it's such a reminder of how much you have, have to advocate for yourself. And this is across the board for all patients, everyone going through anything related to invisible illness or disease in general of how much you have to decide what you Google, what you bring to your doctor, where your concerns are asking certain questions. Because to your point, it's not like you go to a doctor or most of the time you don't go to a doctor and you're empowered with tons of information. You're given a diagnosis. And then from there it's like, go figure out what to do with that. I mean, that's what I speak about related to my own story so frequently is I was given a diagnosis at 10 years old, but have no memory of what happened after that other than exactly what you read, which was given a medication, you're gonna be on this for the rest of your life. And that's about it. So I think there's something so important about remembering that. And to your point, having people be your spokespeople and your ambassadors, I'm wondering what role doctors play in the network and community and if you brought them in for round tables or how you're raising awareness with educating doctors around this topic.
Jamie Nicole (42:10):
I'm so glad you asked that question. <Laugh>, on our next round table in a couple of weeks, I believe it's on the 25th, the fourth Tuesday, we have a doctor on Dr. Nicole Charles. She's also of Kill Me Delicious. So she has, I guess a website, a blog where she posts all of this nutrition information, but she also has a course specifically for doctors called Embodying Equity. So on our next Roundtable, she's going to be on sharing information for practitioners, for doctors, and also giving information to clients on how to find a doctor who will actually listen. So again, I think a lot of times we get it confused and it's some doctors are unaware and don't wanna be educated and they just think that how they, how they operate is the best way to operate and they don't want to work on any implicit bias.
(43:07):
And then you have others who are just unaware, but want to learn how they can be a better doctor, how they can reach more people. And so that's what the conversation is gonna be like, be, be about on the 25th. And I'm so excited about that. And then also we have a doctor on, I also met her during quarantine when Clubhouse was hot and heard her story. So I thought that she would be a good guest as well. She's coming on in in June, she's called the GPS doctor. A part of her story was that she was taking her dad to the hospital. I forget what disease or chronic illness he was facing, but she was not getting the treatment that she needed from the doctors right, until she pulled out her doctor card. And she shouldn't have. Her point was, I shouldn't have had to do that.
(43:56):
And so the experience that she went through made her have an awareness of a need of teaching people. How about how to advocate for themselves, what you just mentioned. So she was a pediatrician. She's no longer a pediatrician. She's called the GPS doc. And so she trains practitioners, but she mostly trains and also acts advocate for families who are going through medical crisis and need to know how to advocate for themselves because they're not getting the answers and the care that they need from the doctors that they're currently seeking. So we're, we're, we're reaching all aspects and that's why I say it's so important and for everybody and everybody needs to be on board because I can be as educated as I, you know, possibly can and go to a doctor who sees me, right, and thinks, because I'm for, I'll give you an example, because I'm overweight.
(44:45):
My issue is not that I have a chronic illness. They are not run any tests and then send me on my way and tell me to go on a diet and come back in six months not realizing that the weight gain or the inflammation in my body is a symptom of something else that's going on and you're not helping me reach my root cause. And then why that's so important, again, I mentioned earlier, if I'm a frontline worker, if I'm somebody who doesn't have the time like I did to continue to go to the doctor to continue to advocate for myself, I'm gonna give up and let the damage just continue to happen to my body until I'm forced to either get on disability, I'm not able to work anymore, I lose I I've known people who have lost their house over their chronic illness, who've, who've lost their, you know, apartment over chronic illness because they couldn't figure out what it was.
(45:33):
Or if they did, they weren't properly medicated so they couldn't keep a job. So it's, again, it's not just a healthcare issue, it's an economic issue, it's an environment issue. It's so many different issues all wrapped into one. We need to educate all parties that are involved in the process so we can lessen that time and diagnosis, not let it do so much damage to our body and be able to provide the proper resources to those patients. And making, also making doctors aware that the resources out here like the AIP BIPOC network that can help create that healthcare team. Like I said with my clients, I, I'm not a doctor, I work in conjunction with your doctor, but to have available resources to their clients so they can help have better patient outcomes and it's a win-win for everybody.
Harper Spero (46:18):
So incredible. I love that you're doing this work and that you took this on. So my biggest question for you is, given the way where we started this conversation to where we are now, how do you manage your own health and your sleep habits while doing all of this incredible work?
Jamie Nicole (46:37):
It's a little bit easier now because I'm not working a job where I have to be somewhere at a specific time and have meetings at a specific time. And I know everybody doesn't have that luxury. I'm be be able to better manage my sleep because that was a big thing with the narcolepsy for a long time. I thought it was a badge of honor. And I think a lot of type A we, we've mentioned that a couple of times. There's so many people out there that I've seen that have that type a personality, that think that lack of sleep or working hard or, or, or, or burning the midnight oil is a badge of honor. And I think, cause I I say this loosely, it's, I don't just call myself the type A personality. A lot of my clients are too. Cause because I think we drive it, we drive that chronic illness because we're not taking care of ourselves.
(47:26):
So I would say making sure that you get sleep following your circadian rhythm if you can. That sleep cycle where you're going to bed when the sun goes down and waking up early in the morning, getting eight hours of sleep and prioritizing that just because of the specific chronic illness that I have is, was key for me. Cause I can't not have enough sleep on top of the narcolepsy because the me, my medication won't work at all. But I also know that my situation or everybody's situation isn't ideal. So taking those small baby steps is how I work with my clients because doing everything at one time, changing your diet, changing your sleep, changing this and changing that can be a stressful process as well. Sometimes people with type A personalities like me want to fix it immediately. And I mentioned earlier it, it has to be a mindset shift.
(48:17):
I'm not the person that I thought I was going to be. I'm not gonna do all the things that I thought I may be able to do. But life, that doesn't mean that life is over. You just have to shift your mind frame, your your, your frame of mind and your mindset to be like, okay, how can I make my life the best that I possibly can with the conditions that I currently have? How can I minimize the impact of flares on my life so that I can function and have a life? So reframing your life in the context of your illness, you don't wanna be defined by it. I don't wanna, I don't wanna be the person that has narcolepsy, but I wanna be the best person that I can be. So I wanna say again, start with baby steps. Making sure that you have a good support system is key. And just realizing that it's a journey. Chronic illness is chronic illness and it's not going to go away. They're gonna be good days and be bad days, but you have to be able to give yourself grace that's so important.
Harper Spero (49:21):
I agree completely. And you know, you acknowledge that you're lucky to not have the full-time job that you used to have where it was hard to balance and that not everyone has that luxury. But I do think that one of the benefits of the pandemic is that a lot of people are now working from home who live with chronic illnesses and have the ability to have a little more flexibility to be able to take care of themselves in ways that they didn't pre pandemic. And I know that's not the case for everyone, but I do think the companies are becoming more supportive and understanding on that front.
Jamie Nicole (49:55):
Yeah, and that's been, it's been a big game changer as well.
Harper Spero (49:57):
Yeah, for sure. So my last question for you is, knowing that this podcast is all around invisible illness, what do you wish people knew about invisible illness?
Jamie Nicole (50:09):
That it's difficult. It's not something that is, and I, I say this loosely and I don't take it lightly, but when I make that comparison, when I'm trying to explain it to somebody, it's not sexy, right? With invisible illness, it is something that you can only understand if you've gone through it, if it impacts you personally or someone in your life, it is something that can take such a mental toll on you, an emotional toll on you that many people will never understand. So if you know someone who has an invisible illness, if you have somebody in your life, friend, coworker, I would just encourage people to just do a little research, right? And I was thinking about this Harper the other day. When we talk about racism, people always say, it's not my job to explain to you what racism mean, white person. Go look at it for yourself. That's what they say. I see that all the time. And so I was thinking about that in the context of chronic illness. How great would it be if people showed a little compassion and understanding and cared enough to go research before they judge?
(51:43):
That way they can become an advocate for those who don't always feel as though we have a voice because we have an invisible illness. How powerful would that be to have someone else when you c, when you can't stand up for yourself when you don't have the energy because you're just battling with doctors, battling with your illness, battling with other things. If you have someone in your corner, anybody that could be a voice for you. And so again, that's part of what I'm trying to do as a part of the AIP BIPOC network is to be that voice for others who can't be a voice for themselves. Because nine times out 10, they've even, they probably don't even know how. So I just to just encourage you, again, Harper, I applaud you for having this podcast because that's a part of it. Having people tell their story so people can understand. But just on top of that, I encourage people to go out and do research on their own, whether they have a family member with a certain disease or chronic illness in general. And it'll open your eyes to a different world of what we experience. So you can have a little more compassion, a little more empathy, sympathy, and be that voice for us as well.
Harper Spero (52:53):
Wow, Jamie, thank you so, so much for the incredible work that you do and for sharing your story and for creating this network that's clearly so needed. Can you share a bit about where people can find you, work with you, join the AIP BIPOC network and connect with you further?
Jamie Nicole (53:15):
Awesome. I sure can. For the AIP BIPOC network, you can go to www.aipbp.org. That's the online community. Once you join that community, you'll see a ton of resources. You'll see a link to become an ambassador if you wanna do that as well. We're on all social media platforms at AIP BIPOC You can also find me the Natural Healing coach@www.naturalhealing.coach. And you can find me on all social media platforms at Heel Coach H E A L C O A C H.
Harper Spero (53:52):
Amazing. Thank you so much. Thanks for tuning into Made Visible. We hope you learned about something new today. If you enjoyed this episode, please take a few minutes to subscribe, rate and review the show on Apple Podcasts. Your support means the world to us. Visit made visible stories.com to check out our writing workshops, corporate offerings, and more information that can help you in navigating life with an invisible illness. Follow made visible stories on Instagram. See you next week.