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CMCL Interview: Brandy Schantz
49 Plays5 months ago
In this compelling episode, Brandy Schantz—Army veteran, former intelligence professional, and chronic illness advocate—joins Julie Sowash to share how her life was upended by severe Crohn’s disease, drug-induced lupus, and dysautonomia.
Brandy opens up about navigating a healthcare system that offered little support and a workforce that wasn’t built for people with chronic illness. Her story challenges common assumptions about who gets sick and how they’re treated—and why so many women in their prime working years are being left behind.
Together, Brandy and Julie discuss:
- What chronic illness really means
- How it intersects with disability and employment
- The real-life barriers to staying employed with an “invisible” illness—and what needs to change
- What employers can do to support those with chronic illnesses in their workforce
Brandy calls attention to a community often left out of the disability conversation, despite their growing numbers. Her advocacy reminds us that we must build systems that support people through all phases of health, and that no one should lose their livelihood simply because their body changes.
Notes:
Brandy Schantz is a former U.S. Army Intelligence Officer, disabled veteran, and Crohn’s disease patient turned advocate and entrepreneur. She founded Schantz Business Group to help organizations embrace disability inclusion, support newly disabled employees, and tap into the strengths of the disabled workforce.
Changing Minds & Changing Lives is produced by Disability Solutions, a nonprofit consulting firm and job board that partners with global brands to drive inclusive hiring and disability-inclusive talent strategies.
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Transcript
Introduction to Julie Sowash and Brandy Shontz
00:00:06
Speaker
Welcome back to ah Changing Minds and Changing Lives. This is Julie Sowash, a Strategic Advisor and Founder of Disability Solutions. So excited to have you all here today.
00:00:18
Speaker
know, usually I do a little recap, talk about some shows we had over the past few weeks. But today's topic and today's guest is so
Brandy Shontz: Background and Advocacy
00:00:27
Speaker
interesting. I don't want to spend any more time not talking to her.
00:00:33
Speaker
um I want to bring her in and welcome Brandy Shontz. ah to changing minds and changing lives. Brandy is a former army intelligence officer, a chronic illness advocate, host of her own podcast called Living Chronic, and the founder of the Shantz Business Group.
00:00:52
Speaker
through her work brandy ah Through her work and lived experience, Brandy empowers organizations to shift HR perspectives, drive disability and inclusion, and create environments where diverse teams are Don't just work, they thrive, which I absolutely love. She's done federal contracting, public policy, systemic advocacy. advocacy I could probably go on for much, much longer, but but I want her to introduce herself.
Challenges with Chronic Illness
00:01:21
Speaker
Brandy, welcome to Changing Minds, Changing Lives. Thank you so much, Julie. i really appreciate it. i love doing these podcasts because it's such a great opportunity not really even just talk about me, but to talk about all the people out there who are just like me, because i don't think we ever really hear our voices enough.
00:01:43
Speaker
You have these preconceived notions about what happens when you're suddenly diagnosed with a chronic illness. And I think so much of my story flies in the face of these preconceived notions. I did everything right in life.
00:01:55
Speaker
I went to grad school. I was an army officer. i i really went hard charging after some very successful employment prospects and careers, and I was a triathlete, a runner, super healthy.
00:02:10
Speaker
So there was nothing on paper that you could look at and say, other than maybe my army service, which to be fair, I did serve near burn pits and that can that can take a girl out. But other than that, you know, i I really did everything right. And yet I watched as I slowly lost my own life, first to a diagnosis of Crohn's disease.
00:02:29
Speaker
And when I was diagnosed with severe Crohn's disease and couldn't get to the office, the first thing I realized is there was nobody there to help me. When I asked my doctor, hey, I can't even get to work. What am I supposed to do? He just said, well, most people just apply for disability.
00:02:44
Speaker
And of course, that's not what I wanted at all. So I found myself in a position where if I wanted to continue working, I had to figure it out on my own. There was no one there to help me get through this. And then...
00:02:56
Speaker
Maybe 10 years after that, almost, i guess seven years after that, after finally getting onto a medication that got my Crohn's into hum into remission, that was my Humira, I had a severe reaction to it that caused drug-induced lupus, dysautonomia of all systems, and POTS.
00:03:15
Speaker
which once again really knocked me down. And I realized that there's so many people out there who go through this and there's just no one to catch us. There's no one to say, Hey, um how do we keep these people in the workforce? How do we help these people to retrain and into different jobs that will better accommodate their illness? How do we as a company keep these people who are becoming ill?
00:03:39
Speaker
And of course, You know, my my big shtick, I always tell everybody, I'm kind of a pushy broad. I'm going to get done what I'm going to get done. And not everybody's like me and thank goodness for that.
00:03:50
Speaker
So I asked myself, what are these people doing? I have plenty of money. I'm very pushy. I'm going to, you know, break down doors until I get what I need. But what about the people who are just trying to make it work, who need to get to work to pay rent? And if they can't get there,
00:04:08
Speaker
They have no place to live. And that's really what drove my advocacy work and getting into this field, because I knew that no one's out there really doing much to help all of these people, mostly women who are suddenly falling ill and unable to work.
Understanding Chronic Illness and Workplace Impact
00:04:28
Speaker
Yeah, incredible. I mean, and and thank you. for sharing. um and And if we could even just like take a step back, you and I were chatting about thats just a hair before we started recording, is the the disability community has so many disparate kind of groups and interests because we are such a heterogeneous group.
00:04:52
Speaker
And so for a long time, i was fighting to get mental health and neurodiversity be a part of the conversation because I live with ah a neurodiverse disability and mental health disabilities and felt like I was kind of fighting this uphill battle.
00:05:08
Speaker
But what I can still see today um is that we don't talk about chronic illness a lot in the community. a lot of executives I've worked for who live with chronic illness kind of don't recognize their space in our community. and So like, let's just start with the very basics.
00:05:28
Speaker
Can you kind of define what a chronic illness is? and And then you got into this a little bit, but why is it so important in the context of employment? So chronic illness, it's just an illness. you're It's not going to be cured, likely. It can be. There are some that are curable.
00:05:46
Speaker
ah But most of them aren't curable. It's something you're going to live with for the rest of your life. Some of them are things we think of in terms of health. You know, you may have type 2 diabetes, of course, which is very different from type 1 diabetes, which is something that is an autoimmune disease.
00:06:03
Speaker
um based disease, something that you just, you're not going to get rid of. Type 2 diabetes is something that comes on later in life, usually with diet. um Heart disease is also a chronic illness, also typically associated with diet, high blood pressure.
00:06:20
Speaker
But then there are other chronic illnesses, Autoimmune diseases being a pretty large percentage of those when you think about autoimmune diseases, Crohn's disease, rheumatoid arthritis, um multiple sclerosis, all of these are ah autoimmune chronic illnesses that unfortunately disproportionately affect women.
00:06:42
Speaker
And of course, today, what we're seeing more of, and it's growing in numbers, is long COVID, which finally getting on the other end of the pandemic, but on the other end of that pandemic is a new problem, and that's long COVID, another illness that is disproportionately affecting women between the ages 35 50.
00:07:01
Speaker
Again, prime work years. So we're getting a lot of disruption in these prime work years with a with many of these chronic illnesses. And chronic illnesses can take very different forms and they look different on everybody.
00:07:13
Speaker
What I do advocacy day, I am active in both the dysautonomia community. I'm also on the board of the Crohn's Colitis Foundation here in DC.
00:07:25
Speaker
And when I go to advocacy days, so many of us look so different. For some people, they're able to get their Crohn's disease in remission quickly. it It may affect some of their days, but most days they're pretty good and they can go about their days. Dysautonomia, I see some people in a wheelchair, some are using a rollator.
00:07:43
Speaker
um Some of us don't have a mobility aid at all. It just depends on how that disease affects you Where it starts to affect the workplace,
00:07:55
Speaker
is when you have something like say Crohn's disease. My biggest problem was I was sick in the mornings until about 10, 11 a.m. a m So I could not get to an office.
00:08:06
Speaker
There was no leaving my house in the morning. And of course, today we live in a world where work from home is um something that happens for many, many people. This was pre-pandemic when I was diagnosed.
00:08:19
Speaker
And this was also a job I worked in the intelligence community. Everything I did was top secret. The name of the program that I was managing was top secret.
00:08:31
Speaker
So there was nothing I could do at home. So even if that had been a conversation, there was nothing I could do. And these are the scenarios people find themselves in because it may not be something huge. You know, there are certain things we've done very well in the workforce.
00:08:46
Speaker
um You know, if you have a wrist injury, you can call HR, get somebody to come up and outfit your workstation to better accommodate that. But there's other things that we're just not doing very well.
00:08:59
Speaker
And for example, rheumatoid arthritis, almost half of everybody diagnosed with rheumatoid arthritis is out of the workforce in 10 years. Wow. And it's just because we're not putting together programs to address these various illnesses and the different severities that they may present to us.
00:09:18
Speaker
Not everybody... is sitting at home with Crohn's disease unable to work. Not everybody is sitting at home in pain all day long with rheumatoid arthritis, but some people are.
00:09:30
Speaker
And when we create programs and avenues for people to work within their diseases, it helps to keep them employed.
Employment Biases and Disabled Employees
00:09:40
Speaker
And honestly, it also helps to keep really great employees and real talent in the workforce, because we're also losing a lot of really great talent.
00:09:48
Speaker
And all I hear all day long from ah h r and executives is, oh, we need people who are nimble. We need people who are, you know, amenable to change and who can,
00:09:59
Speaker
get in here and adapt easily. and That's disabled people. They can adapt. The problem is you and your workforce didn't. And that's really what I want to see change.
00:10:11
Speaker
Yeah. I mean, and thank you for for the exla explanation. I think it helps our listeners to kind of put... Actual kind of faces to what you're talking about, because we all know people who have MS, who have fibromyalgia, who have diabetes, go, you know, listt list your list, your chronic illness, um you know, and.
00:10:34
Speaker
I do. know that we already have a workforce shortage in this country. We have skills mismatch. and we are looking at, in the next period of time, a lot of people losing access to government-sponsored health insurance, which is going to drive more people out of the workforce. So I think this is, ah again, it's such a critical conversation for employers to understand.
00:11:02
Speaker
and I think it would also be helpful. Like, I think a lot of people assume chronic illness, it only affects affects just ah maybe a small percentage of workers.
00:11:14
Speaker
um But you already hinted that a lot of people are prime working age when they are diagnosed. Talk to me more about that. and So I think we, I thought of it this way, you know, if you have a disability, you were probably born with it. As a matter of fact, in the disability community, that's kind of where we put all of our eggs, right?
00:11:34
Speaker
It's all in the born with it basket, you know, start helping them out through school. That's why so many of the programs are actually under the department of education for everybody out there who was shocked when we started talking about the various disability programs that would be cut if you got rid of the department of education.
00:11:51
Speaker
That's what it stems from. We think of disability as something you're born with rather than something that is acquired later in life. But as we're learning and so many things, whether they be um breast cancer, colon cancers, Crohn's disease, ah pretty much any of the autoimmune diseases, we're seeing so many new Crohn's patients, ulcerative colitis, lupus, all of these things can be triggered by an environmental event.
00:12:20
Speaker
So we hear about it all the time with the soldiers and sailors and airmen deployed. If you're near burn pit, suddenly they come home with these illnesses. And now, of course, those are covered under the PACT Act.
00:12:33
Speaker
But we're not really talking about what that means for not just the military community, but the community at large. People are experiencing these environmental events, we don't know all the answers. There's so much that's still just unknown.
00:12:49
Speaker
But what we do know there is an environmental aspect to things and you're living with this. And then next thing you know, you're 39, 40 years old and you're diagnosed with severe chronic illness.
00:13:02
Speaker
And that's growing. That's growing. And unfortunately, it does seem to hit that key demographic. We're seeing it now with long COVID. And I think it's important to bring up long COVID because I think many people ended up being shocked by it.
00:13:19
Speaker
but do you What do you mean I'm still sick, you know? yeah um And these people can't get to work. It's very difficult. Long COVID is not easy.
00:13:30
Speaker
And that also tended to hit people between the ages of 35 and 50. But when that happens, where do you go? Doctors don't know what to say. They just, well, you know, doctors are overworked anyways. They don't have time for your nonsense, right? They're like, i you know, nothing I can do. I've got 50 more patients today and half of them aren't going to get reimbursed almost any money because that's just what we're dealing with with insurance. So they're they're stressed to the max. Every time I talk to a doctor, it's like super fast, got to go.
00:13:59
Speaker
um So that, that they're not going to be helpful. And we need to get some buy-in from the corporate community. the workforce. I say, okay, what are we going to do? Okay, you have long COVID. Can you work from home?
00:14:14
Speaker
Okay. Or, you know, for many people with mobility issues, what if we can change how you do your job? Or what if we take those skills you have and retrain you into a different field.
00:14:28
Speaker
You know, all of these things are great options that that we could be doing and we just aren't doing it. And it would help the workforce as well. Every time I see a news story about the next job field that we're just terribly understaffed at, I think, well, how about how many disabled people are sitting out there wanting to work ye that you just haven't retrained? Yeah.
00:14:50
Speaker
Yeah. Or you've never even considered because they have a disability because they can't use your inaccessible applicant tracking system. Yes. Use assessments that aren't validated.
00:15:02
Speaker
like and And I think this is probably like my biggest point of frustration with the way companies approach not just not just hiring people with disabilities, but hiring in general.
00:15:15
Speaker
let me Let me say it this way is that All the things that you and I are talking about, these are not government secrets, right? This is not right classified stuff.
00:15:27
Speaker
We know as leaders in TA and in HR and in the C-suite, what is coming. And we fail over and over and over to build programs that support not just our workers, but our shareholders, our investors, and our customers to continue to allow our businesses to thrive and continue to innovate.
00:15:59
Speaker
And, you know, i think that, you know, i would love to hear what you hear from ah HR leaders about, you know, the challenges um of but supporting a person who's living with a chronic illness, how people may be approaching it systemically, um you know, any best practices that you might want to share.
00:16:20
Speaker
i think learning from how people are or are not doing things is is valuable. It absolutely is. Because you know what? The number one problem is usually that employees don't even tell HR because we're scared.
00:16:34
Speaker
And I understand that. i can I can be very honest about this and say you do feel sort of thrown out in the trash often when you're diagnosed. I feel i was hard charging and on this upward trajectory and in high demand. And, you know, I was the kind of person that you know would get poached from one company to the next.
00:16:59
Speaker
And the next thing I knew, it was just, oh, she's sick. And it felt like everybody abandoned me. And nobody wants to feel that way. So people become scared for good reason. We aren't really talking about how we're abandoned. We aren't talking about how you shouldn't be so scared of us.
00:17:15
Speaker
I still can get things done. I just look different than I used to. And that's fine. The second thing I hear all the time is they didn't even know that they were discriminating against disabled people.
00:17:27
Speaker
And the number one way they do that is the resume gap. Yes. If we had a doctor on here with us, i we'd we'd be hard pressed to find a doctor who would say, well, you know, you should try your best to keep going to work every day while dealing with your cancer treatments.
00:17:46
Speaker
not going to say that they're going to say you need to get out of the workforce and you need to concentrate on getting rid of cancer, beat cancer, go back to work later. If you're Crohn's disease, you know, again, I think a lot of people think of something like that, like IBS. No, you can die from Crohn's disease.
00:18:02
Speaker
You need to, if you have severe Crohn's disease and you're in the middle of some difficult flares, you need to focus on getting into remission, put your effort there. So you leave the workforce and you take care of your health and once you're healthy again and you're able to get up and do the things that you wanna do, you go back and it's crickets because nobody wants to hire somebody with a resume gap.
00:18:26
Speaker
Yeah. I mean, and I've been talking about this for 15 years and we're still talking about it. And AI is going to scale that that gap or that that chasm um that a resume gap gives to getting hired and in ways we, I don't think, have fully estimated yet.
00:18:47
Speaker
No, we haven't. And I hear the same thing every day. We just, just like we said, I need a resilient employee. We have so much change coming down the pipeline with ai Where will I ever find these employees?
00:19:00
Speaker
Well, I know exactly where to find them. And you just keep looking over them because there's a resume gap. There's also this obsession right now. And I think it's just been the last 20 years, we've just been obsessed with sort of the breed of employee, if you will, right?
00:19:17
Speaker
Did they go to the best school? Where did they graduate from? What clubs were they in? And, you know, look, I mean, this isn't brand new. You know, I don't care if it's 2025 or 1955.
00:19:29
Speaker
You know, if you kind of went to Yale and you were in the right clubs, you're always going to have your friends come out and try to hire you But today, there's so much obsession with your kind of the breed of the employee, where they came from, where did they come up from? And then from there, it's, is it are they hard to get?
00:19:47
Speaker
Do I need to poach them from a different company that's very sought after? And you have all these HRs and these recruiters out there all fighting over one guy. Whether that guy is really good or not, I don't know.
00:20:00
Speaker
i I've met quite a few people that have a lot of, you know, good on paper breeding with their you know, Ivy League education and this certain club, and I've worked for XYZ tech companies, but I've worked with them and thought, okay, well, this is just not um very productive now, is it?
00:20:19
Speaker
But, you know, but they look great on paper and everybody wants to feel like they're getting that hard to get guy. But you're battling over these guys that may or may be they are phenomenal. Maybe they are, you know, elite, and you know, just a super high performing employee, but often they're not.
00:20:39
Speaker
But you're fighting over them because there's this obsession with this perception of getting the desirable, you know, nobody wants the you know, coach bag on sale. They all want the Hermes Birkin bag that you have to get on a list for. And, you know, we're people, we're employees, we're not handbags.
00:20:58
Speaker
ye um And we're not helping out um the actual mission, shareholders, the product. but None of this is being supported by these kinds of HR actions.
00:21:11
Speaker
What would really help was getting in people who are nimble, who are resilient, who are good with change, who do understand AI. And that is disabled people. You know why? We have to understand AI. There's so much that I need to make myself uncomfortable to understand because I need that accommodation for my illness.
00:21:32
Speaker
I'm used to being uncomfortable. I'm uncomfortable every day. I wake up each and every morning not knowing what my day is going to look like. And then I have to just adjust accordingly. Isn't that the employee you want?
00:21:44
Speaker
Yes. Yes. The one that can roll with the punches that come and they figure it out. Yeah. I mean, and I think this is true of, of people with disabilities. I think it's true of women. I think it's true of underrepresented, you know, minorities in our workforce.
00:22:01
Speaker
and And too often the the silver spoon Ivy League gets the nod um because it makes everyone else feel good about themselves, I guess.
00:22:11
Speaker
I don't know. And I agree. Like I'm 100% over um the pedigree as as the contender. And, you know, so if we've got a good employer, ah if we've got a proactive employer, let me say it differently.
00:22:26
Speaker
um And... They recognize, you know what, we've got potentially an aging workforce, we have a highly female workforce, ah we have a, you know, underrepresented kind of minority workforce, where auto or where chronic illness is more likely to um make itself known during during prime work years.
Support for Employees with Chronic Illnesses
00:22:50
Speaker
What are some of the supports that make the biggest difference for an employee living with a chronic illness? You've you've talked about some of them with flexibility and that kind of thing.
00:23:00
Speaker
what What are some others that you see as best practice? Wellness programs, we're starting to see more wellness programs in in companies, and that's a great thing. First, for some of the things that you can prevent. you know If you're an employer and you want people coming to work and being productive, well, then let's start with well and health and wellness. If you have a large percentage of your workforce that's dealing with ah you know, heart disease or high blood pressure. These are things that are going have, you know, have them be becoming ill more often and out of the office. So let's have these wellness programs. Let's have gyms in the office, yoga classes.
00:23:38
Speaker
These are all good for that kind of that easy to fix kind of stuff, right? um One of the most overlooked is menopause. Where are the menopause support groups? We never, I mean, my mom, I don't know her generation. She doesn't remember anything of a perimenopause or a menopause. There was just like one day you wake up and you're relatively young. You're like 42. And they're like, well, it looks like you need a hysterectomy.
00:24:00
Speaker
And that's how we dealt with women's hormonal changes for years. Of course, we don't do that anymore. So having support groups. to help employees to figure out how to get through these very difficult transitions. That's that's another really big and important thing we could be doing at work to ensure that our employees feel supported and feel that they can reach out to other employees and find ways to manage their symptoms and get to work.
00:24:29
Speaker
um Same with many of these other chronic illnesses, these wellness programs and support groups. Having people going through the same thing I am has helped me so much. And I always say to people, there's so much about that podcast I started. And I just started it trying to figure out a way to stop crying, honestly. was just such a difficult time in my life. I was so sick.
00:24:53
Speaker
I'm battling trying to get a diagnosis, fighting doctors all day long. And it just turned into my whole life where I was either so sick I couldn't move or I'm on the phone with a doctor trying to get an appointment or trying to drive down some research so that I could tell the doctor which, you know, direction to go because they need direction at this point.
00:25:15
Speaker
Um, and I, and I found that talking to people going through what I am helped and it helped me to understand my own disease and it helped me to figure out how to better live with it so that I could be productive.
00:25:27
Speaker
I learned new treatments. I learned little things I can do. It helped my mental health, which helps your physical health. You know, all of these things you don't think too much about, but having that support system really does help you to be able to get up and get out and be your best self. When you're sitting at home alone feeling ah like you're the only person in the world dealing with this, it's so difficult.
00:25:51
Speaker
It really is. And and again, doctors, they they're too busy. They don't have time for this, unfortunately. But they're just not there to help you to figure out how to live your life. And that's what we need. We need ah an occupational therapist, a life therapist, a coach, all of these things to help you figure out, okay, now I have these diseases. How do I live my life?
00:26:10
Speaker
I don't know. Yeah, I mean, i I'm so glad you brought up wellness programs and benefits. is a A lot of times when we're talking about HR leaders, you know, they're very focused on, oh, I can do self-ID campaign. I can do a marketing campaign. I can do all these things, which are not unimportant pieces of the work.
00:26:29
Speaker
um But they they tend to overlook the very basic infrastructure of and benefits that really, really, when built with the whole workforce in mind, can be incredibly impactful to to keep people healthy, ah to your point, but also to support them in their journey with and disability, chronic illness,
00:26:55
Speaker
menopause, pregnancy, name your name your life situation. um i think that is a vastly looked under opportunity by most American companies.
00:27:07
Speaker
Absolutely. So you talked about this and I just kind of, as we are kind of wrapping up the discussion, one of the things that you and i talked about a lot was women are are disproportionately affected by autoimmune diseases and and other chronic illnesses.
00:27:28
Speaker
um And we have very busy doctors who are underpaid, underappreciated, and under-resourced.
Gender Disparities in Healthcare
00:27:39
Speaker
um
00:27:42
Speaker
But talk to me a little bit about
00:27:46
Speaker
how we help women, not just women, but, but in this case, let's talk about women. That's okay. Um, to, you know, you went through this journey of getting diagnosed and you had to to your point earlier, a lot of privileges um in going through getting diagnosed. And it was still an incredible challenge for you.
00:28:12
Speaker
Talk to me about sort of that crossover between being a woman and trying to get diagnosed and supported when you're living with a chronic illness from a healthcare perspective.
00:28:25
Speaker
You know, it's a full-time job. It's a full-time job. nobody's Nobody's coming to save you. You have to save yourself. And that's unfortunate and that's difficult.
00:28:37
Speaker
I'm pushy. I'm very aggressive when I need to be. i am very proactive. It took all of those things plus just to get me a diagnosis. And I think one of the things that still to this day shocks me in so many ways is I'm always congratulated on how quickly I got a diagnosis.
00:28:57
Speaker
To be clear, this timeline, I started having the symptoms of my reaction to Humira in February 2020. I did not get a doctor recognizing that I was having a reaction, a well-known reaction, by the way, to Humira until late September 2021.
00:29:16
Speaker
Wow. At that point, I did get my ability. I'd had lost my ability to walk. I started getting my ability to walk back as soon as I skipped my first Humira dose and it slowly got better.
00:29:31
Speaker
But my other symptoms did not subside. And I started going to doctors in January of 2022 saying, Hey, this is still around.
00:29:42
Speaker
I'm not normal. These are my symptoms. I did not get my diagnosis of dysautonomia until May of 2024. i did not get my diagnosis of POTS until the summer of 2024.
00:29:57
Speaker
And I heard over and over again that two and a half years was amazing. Look at the work I did. You really did a great job. And that's really unfortunate, especially since ah particularly the POTS,
00:30:11
Speaker
I was showing very, in hindsight, I realized that my symptoms of POTS were pretty obvious in February 2020. And now that I know what I do, that would have been the first thing I would have tested me for. Wow.
00:30:25
Speaker
I mean, that's that's incredible. I would never think of congratulating you for yeah basically four years worth of work to just get the attention from the healthcare care system that you needed.
00:30:39
Speaker
Was there a
00:30:43
Speaker
ah was there a moment where it kind of all finally came together? Was it finding the right doctor? Was it finding the right support group? Was it just endless amounts of tenacity that pushed you across the line?
00:30:59
Speaker
It was endless amounts of tenacity. I was not going to give up. You know, no doubt. I mean, there's there were times where I just said, okay, I can't do it. And I just laid down And that's what I do. i You know, my cure-all, this is what I tell chronically ill people, anyone going through anything, cancer, you name it, talk to me I'm going to tell you what to do. Just watch Real Housewives. That's what I would do. There were there were my moments where I said, you know what?
00:31:24
Speaker
That's it. We're just watching Real Housewives. And I laid on the couch and I turned on Real Housewives and I binged all of New York and I enjoyed every second of it. If you're sitting out there right now and you keep checking your email for that test result, knowing darn well that it's not there, just turn on Real Housewives, do that.
00:31:42
Speaker
And then when I let myself heal through the housewives, I would get up and start again. But i I was reading through NIH journal articles. I was cold calling studies that was that were looking at diseases or disorders that seemed to mimic my symptoms.
00:32:02
Speaker
I was just throwing stuff at a wall. And occasionally I would find really great people who wanted to help me. I called an exercise study at the VA here in DC. They were looking at long COVID.
00:32:14
Speaker
And I said, you know what, some of these symptoms look somewhat like some of the things I'm going through. And I cold called them and the PhD who answered said, you know what, let me see what I can do to help you.
00:32:27
Speaker
And he took a few days and he spoke to all these different doctors and he came back and he said, you know what, these doctors are willing to help you and talk to you. One of them was a retired army doctor. He had just retired from Walter Reed. So he was of my people. And he said, come on in. Let me let me do some tests. Let me see what I can figure out for you. So I came in and he ran a bunch of tests for me.
00:32:48
Speaker
he was able to see that as soon as I started exercising, my blood pressure dropped tremendously. And that's how we knew i needed POTS assessment.
00:32:59
Speaker
Wow. ah So it was a lot of tenacity, you know, again, and a lot of pushing and not taking no for an answer and not putting up with being spoken down to.
00:33:10
Speaker
and That was ah one of the things that shocked me is, you know, yeah here I was, this lifelong athlete, And I have doctors saying to me, oh, well, you know, you can't run. Well, you're probably just starting out too fast. As if, as a lifelong runner, i would have never figured out you don't want to start out too fast. Or, oh, well, you know, you might be dehydrated. You know, being dehydrated can really hurt your run.
00:33:36
Speaker
Thank you, doc. I'm glad you went through so many years of medical school to teach me that. I mean, it was just insane, but I put, but I wouldn't put up with it. I think that was, I immediately stopped them and said, no, you're not doing this. You're not doing this.
00:33:52
Speaker
I'm not sitting here as was a very accomplished runner and letting you talk down to me this way. I know when something's wrong, you need to conduct these tests.
00:34:03
Speaker
You need to do these things. we need to keep pushing and finding a reason for this. I'm sick for a reason. And it's not because it's in my head. I had one doctor who, i yeah you know, something in my file, I guess, showed that I had been in the army and that I had been deployed.
00:34:19
Speaker
He most certainly did not have my mental health diagnosis, but he saw that I was in the army he said, oh, deployed. Yeah, you know what? This is your PTSD.
00:34:34
Speaker
Doctor, you do not have a PTSD diagnosis sitting in front of you. Yeah. Why would you blame this on my PTSD? So yeah, it just takes a lot of tenacity. It takes a lot of gumption. It takes a lot of pushing. It takes a lot of research.
00:34:52
Speaker
which is difficult. I do not have a science background. You know, i studied business, you know, um I studied international relations. I, so you know, you call me when you want to make money or when you need to go into Iran to get the oil, but um you don't call me for healthcare reasons.
00:35:10
Speaker
And reading the NIH journal articles gave me a darn headache, but nobody else was going to do it for me. So when I did finally get my diagnosis, it was 100% because i drove the diagnosis.
00:35:23
Speaker
I did the research. I cold called the studies. I found the places where I could get testing done. It was 100% me. And that's exhausting. Yeah.
00:35:33
Speaker
Especially when you're sick. Yeah. And and i yeah i'm I'm just a little bit speechless, um you know, to hear this. And and I think... for women especially but anyone who's who's ill but as women were taught to be polite and quiet not argue not push back and i can't tell you the dozens of women that i've spoken to in my own life who have
00:36:04
Speaker
been ignored, who've been dismissed. You're, you're a menopausal, you're old, you're overweight, you X, Y, Z, it's all in your head is so common.
00:36:16
Speaker
Um, n women have an, and will continue to lose their lives because they are not men. in these conversations. Let me just be frank. And so I appreciate you telling your story because i want other women to feel empowered to be rude and to be loud. Yes. And to to, that no one else is going to come rescue you.
00:36:45
Speaker
um And without disrespect to the medical profession there who are vastly under-resourced. um They are. We need to take women more seriously when when we say that we're in pain.
00:36:59
Speaker
um And I think that's just hearing that from you is so important. And I appreciate you being being willing to share the hard parts with us.
00:37:10
Speaker
And I hope too somebody will hear this and think about the women who don't have time to deal with this. You know, i I say over and over again, the reason I'm so passionate about doing something is because as terrible as my life has been as a result of this, I have so much at my disposal that other people don't.
00:37:30
Speaker
As I was going through this, I have plenty of money. There was money sitting in the bank. I wasn't worried about that. My husband makes enough money to take care of any bills. We have no problem. um You know, I have health care.
00:37:43
Speaker
I was able to make this my full-time job, but each and every day there are so many women out there who are dealing with just what I'm dealing with, except they have to get to work because losing Three hours of work that week means they can't quite make rent and or they have children. And, you know, between the cost of daycare and trying to get to work and, oh, by the way, daycare, if you're five minutes late, they start charging you by the minute some ungodly amount of money.
00:38:11
Speaker
It's very difficult to make this your full-time job when you already have a full-time job and a half or two. Yeah. So we need to be doing better to think about what are these women doing? How are we helping them? In the workforce, we put so much emphasis on, and oh, what do we do to not lose our big talent?
00:38:30
Speaker
Well, you know who ah who is also important? The guy that's delivering your packages. Who lives without that guy? He's one of the most important guys in the world. Are we asking ourselves what this person's doing when they're going through a chronic illness?
00:38:44
Speaker
What about the hourly workers down in the mailroom or the folks that are answering your phone? the These are very important workers too. And it's even more difficult for them because as much as you're you know, vice president who just was diagnosed with lupus gets their short term disability and everybody's worried about them and how do we get them back?
00:39:04
Speaker
And we want to worry about that person. But also, what about the person who can't even get the lupus diagnosis? Because she works 40 hours at your company and then another 20 hours somewhere else and is barely making ends meet.
00:39:18
Speaker
And she just doesn't even have time to deal with this. And by the way, she's not even listened to the way I was pushy, but people were like, well, this woman's very well-educated. She's coming in with, you know, a book of, you know, peer reviewed medical journal articles.
00:39:33
Speaker
I guess we should probably read this. You know, what about the people who aren't very well-educated and don't understand that and aren't coming in with a book, you know, so, so, and they're the ones who need the most help. So I think we also need to think about that employee.
Strengths of Employees with Chronic Illness
00:39:47
Speaker
that person, that woman, and and figure out ways to better help them because they're suffering so badly. Yeah. ah No, you I mean, I think that's just kind of a ah perfect note to wrap up our discussion on. And hopefully Ashley told you, um we always end the podcast with two questions.
00:40:07
Speaker
um And the first one, you know, just... If you could tell an employer one thing to change their mind about the value that people who live with chronic illness bring to their workforce, what would it be?
00:40:21
Speaker
Adaptability and loyalty.
00:40:26
Speaker
Adaptability and loyalty. You're going to get the best out of them. Two perfect things that every employer is looking for. um And is there one thing that someone did for you that helped change your life?
Brandy's Community and Resources
00:40:39
Speaker
Oh, gosh, I've had so many people help me now, especially thanks to my podcast. Oh, my goodness. I'm, I am genuinely writing a book right now, which is largely a giant thank you to so many of the guests I had on my podcast.
00:40:53
Speaker
um So I think what I want to say is everybody, everything you do each and every day makes an impact, and it can make a difference in someone's life. um From the first person who told me nobody's coming to save you, you got to save yourself. And that drove me to say, okay, that's it.
00:41:09
Speaker
Stop waiting. Get out there, make it happen. To um my husband, who has stood by me and helped me and taken me to doctor's appointments and you know, helped me as I've had a meltdown in more than one doctor's office to, um you know, just my friends who've been there for me.
00:41:31
Speaker
um You know, every person makes an impact. And just because you think what you've done or said is small doesn't mean it's small in that person's life. Incredible. Brandy Shantz, tell our listeners how to connect with you, where to learn more.
00:41:47
Speaker
So you can go to my website, brandyschance.com. That's not the easiest last name, S-C-H-A-N-T-Z, but just try to look for the most German spelling you can. You'll probably find me.
00:42:00
Speaker
And Living Chronic is my podcast. You can also find me on LinkedIn. I'm very active there. i always share as much as I can on LinkedIn with employers and ah chronically ill workers and HR and all the people who love us um on how to better employ disabled people, chronically ill people and help keep us ah in the workforce and in this economy.
00:42:32
Speaker
Amazing. Amazing. Thank you so much, you guys. Another ah fantastic episode in the books. um We'll see you next time on Changing Minds, Changing Lives.