Navigating Chronic Illness: A Global Perspective

In this conversation, Brandy Schantz and Anna Knight explore the shared experiences of individuals living with chronic illnesses, emphasizing the global nature of these challenges. They discuss the rise of dysautonomia and the importance of awareness, the grieving process associated with chronic illness, and the power of patient-led movements. The conversation highlights the need for systemic change in how society views and supports individuals with disabilities, advocating for personal agency and the importance of community support. They also touch on the economic impact of disability and the necessity of redefining fulfillment in the workplace, ultimately calling for a more inclusive and understanding society.

Transcript

Brandy (00:01)
This is Brandy Schantz and welcome to Living Chronic. Today I'm here with Anna Knight, audaciously radical coach from the Audacious. And welcome back to the show, Anna.

Anna (00:12)
Thank you for having me again.

Brandy (00:14)
I love when I get a second visit. I keep getting my favorites to come back. So that's pretty exciting. Yay. You know, there's so many of us out there just trying to do our part, whatever it is, whether it's just, you know, surviving for the day or trying to help other people going through similar situations or, you know, out there trying to change policy or law.

Anna (00:23)
Well, I've got a good list then.

Brandy (00:44)
And you're out there every day as a coach and a mentor who's really trying to make a real impact and a change. And I love that. And it's not just that you're doing that, it's that you're doing it from a completely different place. And as we learned on our last episode, even though I'm in the United States and you're in England, we have the same problems.

Anna (01:07)
Yes, very much so. Yeah.

Brandy (01:10)
And I think that's really interesting, especially here in the United States, everybody says, well, you know, it's always a better over in Europe. If we have a problem, it's just because we're not doing it the way Europe does. And Europe, just so you know, encompasses everybody in all things. So it's important to point out that we can't just look to this giant monolith that we just love to call Europe, meaning the rest of the world, because we all have the same problems. How many of, right?

Anna (01:34)
Mm-hmm.

Yeah.

Yeah, it's something I've noticed a lot online recently is this idea that if we were just somewhere else, it would be better. this in Europe, like I know we're not in the EU anymore, but there is that kind of, well, the North Americans are doing such amazing research. And it's like, actually, I think the systems that are impacting us are broadly similar. Like, yes, there's differences in healthcare, social care.

Brandy (01:54)
Yeah.

Anna (02:11)
But on a very broad level, the problems that we experience are the same as the problems you experience.

Brandy (02:17)
No, exactly. And it was one of the first things that really struck me when I started the podcast, because you want so much to have a model to look at and say, see, it's easy. Let's just do it this way. Because that's the easy way. But when you find out that wherever you go in the world, we're all experiencing very similar issues, similar bureaucratic, you know, wall similar.

know, you know, whether, you know, you're in the US or England or Australia or Germany, you walk in, you have a problem, you're a woman, you're probably gonna be dismissed a little bit, are you overweight? That is going to be at 1000 % of the problem every time. You know, must be the weight, must be the weight.

Anna (03:01)
Of course. Your mental health is another good one to be like a little bit anxious. That must be it.

Brandy (03:10)
Yep, you need that therapy. And doesn't matter where we go, we get it the same everywhere.

Anna (03:16)
Mm-hmm.

Brandy (03:17)
So since the last time we spoke, it's been an interesting world for me because, well frankly, I just had my own little meltdown this year, but a lot of it was caused by, I had all these brand new symptoms that came up, things that became worse. And I went to see a doctor and for the first time, this doctor looked at me and said, no, no, it's not in your head. Let me run some tests. I think I know exactly what's wrong with you. And sure enough, he was spot on. I have,

Dysautonomia. And that does take practice to say. But you know, I thought so much about what I've gone through, what you've gone through, what so many different people who've been on my podcast, patients around the world, whoever you are, you know, we just go through these things the same.

Anna (03:50)
Mmm.

Brandy (04:09)
over and over again and it took me four years before somebody said, no, that's not in your head. I have a test for that. And you know what? He had a test for that.

Anna (04:18)
Yeah. And doesn't it strike you? I've had very similar, I can't remember if it happened just before the last time we spoke or just after. But I've got a diagnosis of hypermobility that is fairly recent to me. And that was something that had been noted in my notes right towards the beginning of my journey and then just kind of glossed over.

And it was only when I pressed to see a new rheumatologist who happens to take special interest in hypermobility. And she was like, well, actually this explains this part of what you're experiencing with these symptoms. And it links to things like dysautonomia and drew that whole picture together for me that I went, this would have been amazing information six years ago. But.

It's just that I didn't have the right doctor with the right test with the right knowledge and I was being dismissed as overweight, very anxious, a bit traumatized and I was going, yes I am all those things and there's something else here.

Brandy (05:19)
Mm-hmm. Yes.

Let me tell you about why I'm that way. Yes. Let me tell you, let's, have a storytelling session right now. Can we, talk about how I ended up here, right here. yeah, it's amazing, isn't it? And, know, I've, I've spent a lot of time in the, various groups, for dysautonomia. And of course, you know, sometimes they're just sad, you know, but you know, we're sad, you go through a lot, you see, you know, it feels like a thousand doctors before one goes, well, no, no, this is an actual

condition and you know it's just exhausting getting to that point but these types of illnesses that fall under that dysautonomia umbrella are on the rise and it's largely due to COVID.

Anna (06:15)
Yeah.

Brandy (06:15)
which it just blows my mind that this is one of the many things. And of course, I got mine from a reaction to Humira. I've learned that you can also get this taking an antibiotic. There's certain antibiotics that can cause it. There's various viruses that can cause it. I mean, there's just a pretty long list of things. But with COVID, it just really shot up and just took flight.

So to know that there's so many of us out there screaming and saying something's wrong with me and it took a worldwide pandemic for people to really pay attention and say, you know, we need to take a look at these problems. It's pretty, I mean, I guess if there's a time to have this now is it because they're actually looking at it, but also, wow, it took a worldwide pandemic to get these types of illnesses looked at.

Anna (07:02)
Yeah.

Yeah, and like you say, yes, they're on the rise, but it's not brand new. Like, we've been here. Like, my first symptoms were when I was 16, so a good 20 years ago. Like, that is not pandemic related, but it's only now that people are starting to talk about them, starting to recognize them. I'm starting to get answers now that weren't available to me. And some of that is science moving on.

Brandy (07:15)
No,

No.

Wasn't very young.

Anna (07:39)
But like you say, I think that there's been this interesting pandemic impact of gone actually now we're talking about things like chronic fatigue, dysautonomia, the impact of chronic health conditions, just the impact of being sick on working, on living, on what we value and when we value it. Like that to me is really fascinating that it took something so

devastating, earth-shattering, like life-changing. Yeah, actually it's affecting, I'd probably say billions of people across the planet pre-pandemic, but now we're talking about it.

Brandy (08:19)
It's so many. Yeah. Finally. And who knows? mean, just like you have, I've done the backwards, you well, how long have I had this symptom or that symptom? And, you know, they keep asking me about my low blood pressure and I well, I've always had low blood pressure, you know, prior to this, finally getting an actual diagnosis, I would just hear from doctors, you have the best blood pressure in town.

I do. That's great. Well, I'm a runner. do occasionally faint. Is that okay? Well, you know, it happens and we move on. So, you know, you think back to it and, you know, of course there's this big, vast open space of knowledge that we just don't have yet. And we may not even have in our lifetime, but, you know, to, know at least we're finally studying at it, you know, looking at this, studying it and maybe

Anna (08:48)
Yeah.

Mm-hmm

Yeah.

Brandy (09:17)
I don't know, you know, people like you and I were just more susceptible to it all along. Who knows? But, I'm-

Anna (09:24)
Yeah, I think it's really interesting. I've been doing some reading about the stages of grief model, because I think when you do acquire a chronic condition, even when you can track it back and go, yeah, it's there a lot longer than I realized. When you go from viewing yourself as a healthy person to viewing yourself as a person with a chronic illness, I think you go through a grieving process. And

The big thing out there that we all know is the five stages of grief, anger, bargaining, depression, acceptance. But the person who wrote the six stages of grief, David Kubler, has added a sixth stage. And this is the one that's really interesting to me, because he says the sixth stage of grief is making it mean something. And that can be on a personal level, just like understanding it in the context of your life's journey.

But what I see the people that I work with more and more is that what we're making it mean is something's got to change. And so what really inspires me is the amount of patient led movements in all kinds of chronic conditions and neurodivergence and mental health conditions where it's not actually about the medical community and waiting on that doctor lottery to go, am I going to find the one who can?

give me the right test and that we're actually going, nevermind about the label, how can we manage this? What are the tricks, the secrets, the hacks? What do I need to know? Like I've learned more about my health conditions off of things like podcasts and TikTok than I've ever had from someone getting paid medically to give me information.

Brandy (11:01)
Yes.

no, absolutely. my God, you are right. And thank goodness we're all getting up and saying, no, I'm not going to sit here and be depressed any longer. mean, yeah, I might be depressed while I'm doing something, but I am going to do something about this. And what a time to live when we have so many people looking out for each other and saying, no, no, we can make this better.

As a matter of fact, Saturday I'm going to be speaking at a medical conference filled with GI docs, which of course is just my dream right now because they want a patient advocate and somebody just to get up there and talk about how can you make patients' lives better. And the topic I'm going to focus on is, frankly, I don't care about your opinion.

Anna (11:45)
Amazing.

Brandy (12:02)
And I think so much of my problems never, you know, I remember from the last time we spoke a lot of your problems as well were doctors with their own stupid opinion. Well, is that established science? No. Okay. Well then I don't care. Take your opinion, keep it to yourself. Now let's talk about established science or science that we don't know much about or trends we might be seeing. And then we'll have a little discussion about what might be the best next step for me. It's your opinion.

Anna (12:12)
Yeah.

Mm-hmm.

Yeah.

Brandy (12:32)
I don't care. Stop giving it.

Anna (12:34)
Exactly. And I love that that's what you're doing away or gone because I think that's the next step is at the moment I see these webs of interconnectedness patient to patient. But I think the next step that we need to take is moving that out into the wider medical complex and going actually, no, it's time you listen to us. So I last time I was on, I don't think I mentioned that I worked in autism research for three or four years back pre being a coach.

in my previous career as a speech therapist, I did four years of autism research and it was fascinating because it was reported on internationally as this groundbreaking autism study and yet while we had input from parents of children with autism because it was a children's study, we didn't ask any autistic adults to look at what we were doing to give their opinion on what it would have felt like to them.

have gone through this? Was this, did it make sense to the autistic mind? Did it make sense to how they think about the world? Was it ethical? Was it respectful? Like we were asking the parents is this what you want and yet at no point in that whole study's design and it wasn't, I was in the very last phase of the study. This project had been going for 15 years I think.

And at no point in that process had someone actually stopped and gone to the people who will be impacted by this in the future and gone, hey, can you cast your eye on this? Can you look at it? And I'm hopeful that that's changing now, because like you say, we don't need external opinions. We don't need people to talk about what they think is best for us. I have a friend who

has just been given support from personal assistants to let her do things more independently. The assistants could drive her places, they can kind of support her with activities. She's an ambulatory wheelchair user, so sometimes she's in a chair, sometimes she stands, she transfers. The first thing she got her PAs to take her doing was kayaking.

And you'd never think that anyone at the doctor level or the social care level or at the funding level would have gone, what is really important to you in life, kayaking? But to her it was. That was something that she'd always wanted to do. And as soon as she got that funding, she was living her life. Literally day one, that's what they were doing.

Brandy (15:19)
that's the right way to do it. I tell you what, you know, I we always want to look for a model somewhere because that makes it easier. And knowing that in so many ways, this community internationally is just paving a brand new road makes it difficult. But where we have seen a lot of really great work like that is actually with disabled veterans.

They came home. There really wasn't a whole lot here for them. You went to Afghanistan or Iraq in 2004, five, six, whatever year you went. And you came home and you'd lost a leg or an arm or one eye, whatever it was. There just really wasn't a whole lot available to you to continue to live your life as this new person. And that's when a lot of veterans said, well, we'll figure this out on our own. And they did start various non-profit.

organizations that would take you kayaking if you wanted to. They would start a sports league just for people with various disabilities, missing a limb, whatever it is your disability is. And today we see disabled veterans living very full lives, playing sports, getting out there into nature, doing all the things they used to love. Sometimes it's new things that they never even thought they would do. And somebody said, hey, you know what?

I bet swimming might be something that you'd have fun doing and voila next thing you know, they're at the Special Olympics. So, you know, there's just so much that has been done there. I would like to see that, you know, really implemented broader.

For those of us who were experiencing, know, maybe, you know, you didn't lose a leg in Afghanistan, but you know what? I can't use my legs sometimes. I had to finally break down and get my handicap sticker and you know, I don't, only use it when I need it, but you know what? Sometimes I don't have the use of my legs either and it has absolutely nothing to do with an amputation. So, you know, I think these kinds of things are just amazing for our mental health.

Anna (17:16)
Yeah.

Yeah, and I think it challenges the idea of what a person with a disability is like. There's so much of that idea of being quiet and grateful and, I get just enough to get by and that's good enough for me. I...

when my friend told me what she was doing with her PA, I was like whooping for her because I was like, yeah, that, it was surprising. She's a very dainty, petite, little English lady. And yet at the same time, what a wonderful thing that PA must have turned up for their first day at work thinking like, what are we doing? Getting that kayak, like, we're off down the river. There's so much.

Brandy (18:14)
But I love that. I bet without, you know, we don't even need to ask most people, but I bet most people had in their head when you started that story, she's going to want to go knitting or let's try a painting class. No.

Anna (18:28)
Yeah, like a decorating pottery, like something like that. But no, she was like, kayaking, we're off. They've gone clubbing. She's saved up some of her PA night hours and they've taken them at a night time and they've gone out to the local rock club. there is no one typical person with a chronic condition and yet we're lumped as this.

monolith sometimes of, even condition by condition, like this is what someone with hypermobility is like, someone with ME is like, MS is like, this is your box, now stay in it.

And I'm really passionate about going, like, we just need to smash that box. We need to go, like, there is no box that fits me except the one that is me.

Brandy (19:19)
Yep, exactly. You know, and you know what we did talk about this our last episode, we talked about how difficult it is. You know, they want to just put you into poverty as a disabled person and then maybe you'll get some benefits, but I bet you're trying to milk the system. You know, it was just such an odd system. I just don't know who wants to never do anything else again in the rest of their lives except sit at home and think about how disabled they are.

I just can't even understand why that seems to be the prevailing thought. I, you know, it's been two years now I've been on the Virginia State Rehabilitation Council. And I was recently elected chairperson of the council. So I'm really enjoying it. But I've taken it to

going out and speaking to a lot of people, both in person and online who live in the state of Virginia, most of whom are dealing with long COVID or associated diseases and different dysautonomia issues. And they just have nothing to do and they just have settled into this well, I guess I can't work and I have to be in bed and I'll take the gab of Pinton and never do anything again in my life.

And I'll say, no, you can still work. We have an entire rehabilitation program in the state of Virginia. You can apply for it. You're eligible as a disabled person. Yes, long COVID is a disability. Yes, dysautonomia is a disability. And I can't tell you how happy. The smiles, the joy. One person just squealed. She's like, you've got to be kidding me. Because you know what? As it turns out,

Anna (21:01)
Yeah.

Brandy (21:04)
people of the world, sitting at home all day long just thinking about how disabled you are is not the best way to take care of disabled people.

Anna (21:12)
Who knew we don't want to just sit and feel sorry for ourselves? This shouldn't be a groundbreaking revelation. But I think it is that there, again, there's... It's really interesting. there's a system in the UK called Access to Work, which is, as it sounds, is providing the things that you need to be able to access work. And...

Brandy (21:16)
I know. It really shouldn't.

Anna (21:39)
It has seen the biggest rise in applications in recent history. Like people have suddenly, like through that patient to patient sharing gone, hey, I got this support through Access to Work. Have you heard of it? You could get it. It's having a massive influx of applications. Some of the people that I work with get their support that I give them funded through Access to Work.

to help them develop the skills that they need for the workplace, those kinds of things. But as a provider, what I'm seeing is that the system above it has gone, wow, there's this massive increase in need. We need to tighten down and give everyone less.

Brandy (22:26)
goodness. Yep.

Anna (22:28)
And so the amounts of awards are getting smaller. The things people can have is getting less. And it's like, it's so backwards to me that you go, my God, there's a scheme that is letting hundreds of thousands of UK citizens access the workplace. The government is actively out there saying we want people to get back into the office. We want them to stop working from home. We want people to be working. And yet they're going, my God, so many people have applied for this.

It's not recognizing a need we best give everyone less. It's ridiculous when you think that the amount that could be contributed to the economy supporting all these people who genuinely want to work, want to have fulfilling lives, like want to be doing what they can, but are being not supported by the system. And at the same time, the other side of the benefit system is saying,

or we're going to take all your money off you if you work more than eight hours a week or 16 hours a week. And you go, well, that is such an arbitrary criteria that it means that if you're someone who could maybe work 12 hours a week, you're like, well, I don't want to lose this much money because the wages that I would get wouldn't match it. And I can't live with less money because I'm already living in poverty. So where's the incentive to to expand your horizons to be?

Brandy (23:30)
Yes.

Anna (23:56)
fulfilled as possible if it's gonna make your financial situation worse off. It's backwards!

Brandy (24:01)
No, exactly. Well, and sometimes too. And this, mean, so much and we all do it the same way. That's what's so just mind blowing. You know, you have this system, whether you're in the US, you know, you're in England, wherever. And if you are in a bad place, you're very sick, you need some assistance here in the United States, you have to hire an attorney. So right off, you have to have some level of money to hire an attorney to try to get Social Security disability.

But what if, and of course then you don't, you you chance going off if you make, you you work one hour too much, you know, chance losing your Medicaid, which is your health insurance here in the U.S. if you're, you know, work, you know, you're living on that disability.

But they want to work. you know what? Sometimes every disability is different. I've said it a million times. We all look different. We all react differently. We're all under the same umbrella, which in many ways is crazy because me living with a very severe form of Crohn's disease and dysautonomia is definitely different from somebody who was born, let's say, with Down syndrome. So.

The fact that we're just standing there and lying next to each other trying to do the same exact things, it's just mind blowing that nobody's fixed that yet.

But if you're somebody like me, chances are you could probably look just like a normal person. I mean, you know what? Most people would never know that I was sick if I didn't tell you. Just like you, you you don't know what I'm going through. And I could be the same successful person I've always been, working 80 hours a week in charge of this, taking care of that. But when things go bad, they go bad.

And that's when you need something. I don't need to hire an attorney to be sitting on disability for the rest of my life, but can I please have some sort of a net that I can fall into when things get bad and then just bounce right on out of that? How much better would the system be if you could fall into disability and the proper medical care and if you're somebody like me, you can bounce right out of that. Or if you're somebody who's always going to struggle.

You just don't lose your benefits because you made an extra $200 that month. I mean, it's insane.

Anna (26:23)
Yeah, exactly. Or I don't know about in America, but there's a certain amount you can have in savings. So you can have saved and saved and really be trying to improve your situation, buy a house that you have housing stability, but you can't save up enough to buy a house because even if you're working, if you get any kind of support from the government that's means tested, there's a savings cap on it. It's a trap.

Brandy (26:53)
It really is.

Anna (26:54)
And it frustrates me so much because...

the assumption, that's a very topical subject, that we've got a new government in the UK and they've just announced that they are cracking down on benefit fraud and they quoted 1.6 billion lost to the UK in benefit fraud but what they don't say is that the flip side of that statistic is that the rate of benefits fraud is 0.02 percent of claimants.

When you say 1.6 billion you go, that's a big problem. When you say 0.02 % of claimants are fraudulent you go, actually this isn't a problem.

Brandy (27:39)
Yeah, it's not so bad, it? It's interesting. It's same here in the United States. We have all these people screaming about benefits fraud or, well, as you know right now in this country, voter fraud, as if that's ever even been, you know. But the reality is it's just not happening. It's just not there. But it reads well. People get all excited about it and bent out of shape. People are taking money. I just don't, you know, I'd give up every benefit I have.

Anna (27:42)
Yeah.

Mm-hmm.

Brandy (28:09)
If I could just go back to being the healthy person I was, the healthy young woman I was before I went in the Army, I'd give it all up. I'd give it up in a second. You know, I just don't know why people seem to think that living just, you know, in poverty with nothing to do and depending on the state for, you know, your assistance, your health, that's somehow attractive to people.

Anna (28:19)
there.

think they don't understand the realities of what it's like. think they hear the story about, everyone knows that one person who's a friend of a friend who's got whatever from the government. And you go, that is not the reality. That is an urban legend.

Brandy (29:00)
No. yes, we have them here too. We have them here too.

Anna (29:06)
And you go, yeah, people don't see the reality of it, like being up at 2 a.m. I dislocated my knee yesterday, sleeping, as you do. Like, people don't see that to be able to function for work yesterday, I had to use KT tape to hold my knee back in place once I got it back in place.

And go, that's an easy fix. Until you go, well, actually, a roll of KT tape costs in the UK about £20, so about $40. And I go through three rolls of them a month just holding my joints in the right place. That's $120 in my budget that I have to find just for the privilege of my joints not dislocating.

Brandy (29:57)
Yeah. You know, there's so many things. I mean, we could probably do an entire series on all the things that people think that just drive me nuts or all the things that have happened in my life that really kind of piss me off now. Yeah. Just.

Anna (30:14)
Brandy and Anna rants. We could make the whole thing.

Brandy (30:18)
Just the whole, I mean, we could do it monthly, weekly, who knows? I mean, so much. But I remember being a young lady and I was in college and I just really wanted to make a big difference in the world and I didn't want anybody's help. In school, always, it was a joke back then, I'm sure it's still a joke right now. the girls who were there at college, we would say they were there for their MRS degree. They were always hanging out outside the med school or the law school trying to find that husband.

Anna (30:21)
you

Brandy (30:48)
to find that guy with a certain last name that comes with a lot of dollar figures and you know and I was never that person and I you know of course when you're young you're so judgmental which is so funny because when you look back you're like wow you were judgmental young lady. You know I had in my mind I was going to do great things I was getting ready to commission in the army I was gonna be an army officer I was going to you know work in you know I really wanted to save the women of the world and do all these great

things and here I am I've got severe Crohn's disease it knocked me on my high knee for the longest time it took me four years to get a proper diagnosis for everything I went through with the humero from the drug-induced lupus to the dysautonomia you know pots all this crazy stuff and so much of what is prescribed to me is stuff that is not a prescription drug

I have to get massages once or twice a month, take hot baths. I mean, just, I have magnesium supplements all over the place. My house is just nothing but one big magnesium supplement, magnesium cream, just all this expensive stuff. you know, there's times where I just can't work because I can't move. you know, that's a problem.

And people will say, thank goodness you married somebody who can afford all that. And I'm like, my god, this is what happened. This is where I'm at in life. Is that really what we want for people? Well, you should probably try to marry well. That way, in case you get sick, you can afford all your massages. What a nightmare. No, I'm not happy that I married well, guys. No, not at all, actually.

Anna (32:33)
Yeah.

And what my own situation taught me with my partner who pre-COVID was able-bodied and now has as many disabilities as me, if not more, is that that is fragile. We are one bad case of post-viral fatigue or being hit by a bus or like you never know what it's like until you're facing it. And so...

Brandy (32:48)
Yeah. Get it in tomorrow.

Mm-hmm.

Anna (33:03)
The idea that you're reliant on, thank God I've married well, or that my parents have money, or I have a friend who works in the US, she was a doctor, so she had the really good insurance when she got lupus. Like, that shouldn't be what we're relying on. We should have a robust system in place, like you say, can let you bounce into support and out of support when you need it without...

Brandy (33:22)
That's, yeah. Yeah, exactly.

Anna (33:33)
jumping through hoops without having to go, well, you have to prove that you're really needed. And by that time, you've been relying on food banks for six months because you couldn't feed yourself.

Brandy (33:38)
Yeah.

Yep. Yep, exactly. It's infuriating. It really is. And you know, I love my husband and don't get me wrong, I do feel fortunate to have that strong person standing next to me and supporting me. mean, yesterday I had an MRI. I'm claustrophobic, like nobody's business. So I'm on, you know, three Xanax and he's carrying me in and he knows he's just gonna sit next to me at that MRI and hold my hand for all three hours.

Anna (34:11)
Yeah.

Brandy (34:14)
And everybody's, you know, all the techs are like, man, that is a good husband. know, and that's stuff I appreciate more than just the fact that he can cover all the bills when I'm in a bad place because it's, nobody should have to say, whew, well, thank goodness I have money. You know, that's not the right answer. And more than anything, I never ever wanted to leave my career. I'm still, you know, I still grieve that every day.

Anna (34:30)
Yeah.

Brandy (34:43)
So, you know, we can be doing better.

Anna (34:43)
Yeah.

Yeah, and as you're talking about it, it's making me think as well, there's something in there about what fulfillment even looks like that the end pursuit of it is enough money to be safe.

that I've been having a lot of conversations recently about sleep with my clients. Sleep is something that a lot of changemakers are in short supply of, lot of chronically ill people are in short supply of, a lot of neurodiverse people really would love some more sleep. But the more I read about it and the more I learn about it, the more I'm coming to see that actually part of the problem is not.

sleep itself. Part of the problem is that we are expected to mold our sleep to a societal expectation. So there's a great book called Why We Sleep by Matthew Walker and he talks about there being different chronotypes, different advantages to having people who are up early and up late and that in the days of your even to like your medieval village, your colonial times.

It was a big advantage to the society had some people who were awake really early, some people who went to sleep really late so that the whole community was communally asleep for as short a period as possible. That was advantageous for the survival of the unit. But we've lost that now. So I have clients coming to me who are going, sleep is my problem. And yet actually they're getting 10 hours sleep if they were allowed to be on their natural body rhythm.

Brandy (36:33)
Right. Yeah.

Anna (36:35)
just that their body rhythm would have them starting work at 11 o'clock in the morning. And their boss is saying, no, you need to be here at nine. And they're going, I can't work because I can't be up and at work from nine o'clock. But if I could start my day at 11 and work through till 8 p.m., I'd be able to work.

What a ridiculous system. Like, it can't just be me that thinks that that's bonkers.

Brandy (37:02)
No, it's, know, and it can be applied in so many different things. As somebody with Crohn's disease, people ask me how, what, you know, what was the catalyst that made you leave your career? And I said, well, I had, you I was attached to a bathroom from around 4 a.m. to 11 a.m.

I could do anything you wanted in the afternoon. It was very rare that I was so sick that I had to be down for the entire day or in the hospital. For the most part, my biggest problem was 4 a.m. to 11 a.m.

Text me, I'm in the bathroom, the dog's trying to sit there and comfort me, that's where I'm at. That's where you can find me. So imagine if instead of having to completely leave, and when I asked my doctor for help, I said, you go to work, what am I supposed to do? And his only answer was, well, maybe you could try just to apply for disability, which is not what I want. But imagine if I could have just easily gone to HR and said, you know, I'm kind of attached to a bathroom till let's say 11 a.m., can I start coming in to work at noon?

I could have continued, you know?

Anna (38:05)
Yeah, I had some support recently trying to look at my own benefit situation, see if there's anything I can do, just like you say, to smooth life for those moments where when my illness flares up, like hypermobility is really hormonally driven. So being someone pre-menopausal female, there is a week every month where my joints are spaghetti.

And so I was just inquiring about what I could do for that period. And I was told, well, our recommendation would be you quit work, because then you can get more benefits. And I was like, but I work brilliantly three weeks out of every month, as long as I haven't caught a bug. Like, I'm just wondering if there's, yeah. Like, is there anything I could look at? And they're like, just quit work.

Brandy (38:45)
Why is that always the answer?

Which everybody does, by the way.

Anna (39:01)
that would be your best interest. And I'm like, that is not my best interest, because I would go insane. Like, I struggle with a weekend of nothing to do. If I didn't have a job, I do not know what I would point my brain at.

Brandy (39:14)
You know, this is why, you know, outside of the podcast, I've started a business, helping companies understand how they can, not just how they can increase their disability hires, but how they can retain employees who have become disabled, because that's not what we're doing. We're not doing it in the US, you're not doing it in England, they're not doing it in Germany. We can't just keep losing people out of the workforce, very talented people.

Just because we don't know how to, what, adjust a work schedule for one week a month when they don't feel well? Allow somebody to work from home as they're attached to a bathroom and then come into the office at noon? mean, everywhere I've ever worked, there's always that kind of 9 AM that everybody's got to be there for the meeting. The meeting is at 9. Are you really trying to tell me we couldn't make the meeting at 1 PM? It's not that hard.

Anna (39:42)
Yeah.

Yeah.

Brandy (40:10)
But people don't want to take that next step. they will, believe you me, they will spend as much money and time as possible to make sure that they're stopping even one bit of fraud from getting benefits. Imagine if we put all of that effort into retaining disabled workers. Just imagine.

Anna (40:33)
there.

Brandy (40:34)
It's unreal. It's unreal. And again, it's a shame. Same problem, different countries.

Anna (40:44)
Yeah.

think that's partly why I'm so keen to fight to keep doing what I do. Because I support the people who are on the ground making the change. And I kind of see it that every person that I work with who I can support to make their difference in the world, wherever in the world they are, I've had clients in Australia and America as well as in the UK, if I can help them change their corner of the world.

and network with other people changing their corner of the world as well. Like at some point we have to hit a critical mass where things start to change, right?

Brandy (41:23)
We will, we will, absolutely. We'll do it. I see, know, and for anybody out there who's not subscribing, your stuff you put on LinkedIn is amazing. And that's how we do it. One step at a time, one mind at a time, get out there, change minds, change how we view things. And, you know, I always say, you know, if you don't care about disabled people, okay, I know those people are out there.

Anna (41:45)
Okay.

Brandy (41:53)
you think we should just die, that's fine. How do you feel about profits? How do you feel about economic output? Because I can also subscribe a good quantitative figure to all of this, where, you know, you don't have to care about me, could privately think that I should probably just die and the world would be better, go on, you do you. But keeping me in the workforce, that does have a good number to it.

that increases economic output. It's better for our economy. Companies increase profits. That diversity of thought. I don't care if we're just talking about HR stuff and hey, know, have you ever thought about it from this perspective? Because you know, like we've talked about, there's this whole group of us that can't necessarily be at an office between 9 and 11 a.m. But what about other topics? Why is the healthcare industry not hiring us?

I need some help y'all. And when it's me, it's, you know, it's a little emotional as you, you know, I mean, if you're chronically ill out there and you're having a meltdown or two at the doctor's office screaming, crying, throwing something, whatever it is, have your meltdown. I have mine. yeah, that's totally normal. but you know what? If you call me and say, Brandy, I need help and I cannot deal with these people anymore. I just can't do it. I'm at my wits end. You know what I can do?

Anna (43:00)
understandably.

Brandy (43:21)
I can get you that. I can make it happen. You need appointments? I got it. no, no, no. We'll get you that referral. Don't you worry. I got this. Because we know what we're doing. So why does every job announcement for different health care positions, it's always 15 years experience only in the health care industry? Well, you know what? I got frickin' 15 years of experience in the health care industry, but it's not the way it looks like for you. And you know what?

Anna (43:48)
Yeah

Brandy (43:48)
I know a lot more about what's going on in there than you do. With a different perspective. Just imagine if we hired disabled people to do that.

Anna (43:58)
Yeah, it's a whole new paradigm and I personally cannot wait for that tide to turn because I think it changes the social landscape as well. It changes the economic landscape. There's, I read a great thing on LinkedIn the other day about the purple pound. So the money disabled people would spend if we weren't spending money just keeping ourselves alive.

The impact of that on the economy is huge. The impact on just things like kindness, like the idea that we can view others with compassion. Where if we were hearing more voices, seeing more people, if it was normalized that, Brandy doesn't come in till but you can rely on her to get whatever you need done. And it answers emails on Tuesdays and Thursdays.

Brandy (44:31)
Yeah.

Yes.

Anna (44:56)
because that's when she has her VA sit and help her do it. But you you get her on the phone and that hour you have her on the phone is life changing. that is my skill is coaching people. My skill is not replying to emails in a timely fashion because my ADHD laughs in the face of timely email responses.

Brandy (45:08)
Mm-hmm. No.

Yeah, we don't.

Anna (45:16)
But if people just could accept that that was a part of my neurotype, a part of my disability profile, and viewed that with kindness instead of seeing it as weakness, it would be a completely different social landscape. And I think then you look at other issues that we have going on in the world, like climate crisis and even things as simple as, well, simple, but like homelessness.

immigration, all the social issues if we viewed them with more love, more kindness, more compassion.

the world would be a very different and much more peaceful place.

Brandy (45:55)
We'd be in better place. It really would. No, it really would. And I don't think, you know what? And you're right. I think we look at these things as a weakness. I always like to say it's a superpower. You know, there's things that I can do. It might look different from how you do it or how somebody else does it.

but what my superpower is in how I do things. And just, love your example, the book you talked about, people are awake at different times. Well, people at work at different times.

You know, how many times have you heard of the person that's just angry because they just got a phone call at 7 30 p.m. And for them that's, you know, finishing up dinner, putting the kids to bed. Well, for me, that's no problem for me. You if you would have just let me, you know, hang in my bathroom until 11 a.m. I can be at work at 8 p.m. No problem. Or, you know, because I have an amazing attention to detail because every little

bitty thing that happens in my life changes how I feel. So I think of everything. And that might not be important for some jobs, but for others it is. And there's a reason we don't have engineers doing the same exact job as an attorney. Those are two different jobs, two different mindsets, two different degrees, two entirely different people. And that's good. That's a good thing.

We don't need an attorney coming in and trying to design our newest vehicle. No. It's our problem here in Washington, DC as it is. Attorneys everywhere. Yeah.

Anna (47:33)
Yeah, and if there was some more respect for the lived experience like that.

Like, my partner is the most phenomenal problem solver. He can look at a situation and extrapolate out 52 steps into the 12 potential outcomes and pick his way through to go, here's what you need. But at the moment, he is not well enough to do the jobs that would get him to a role where he could be a problem solver professionally. He can't build up those X years of experience.

Brandy (48:09)
And if we just accommodate.

Anna (48:12)
His gifts are not being used.

Brandy (48:15)
Yeah. There are there is a man here in the Washington DC metro area.

He has a business, his son is neurodivergent and he started a business where he trains these neurodivergent adults to do a very specific type of analysis for the US military. When they graduate his program, he pays for them to get their security clearance and they go off into the workforce doing a very unique and difficult type of analysis.

that we just can't get any old person to do. And I love that he started that business. I started learning more about it through my work at the state. imagine if we look at everything through that lens. Just imagine. Because, you know, did any of these people have 20 years of experience doing that type of analysis? No, no. They were chosen especially for the superpower that they have as a neurodivergent adult.

And now they're using those superpowers and it's been very successful. There is one that works in my husband's division, or not his division. He's over at the office of Naval Intelligence. I there's somebody there and he says, they're just doing wonderful work. And it's because instead of looking at neurodivergence as a problem, this person said, you know what? It's not a problem. It's just that you don't understand it. Let me show you what this neurodivergent person can do.

and it's brilliant. So that's what we need to capture. That's what we need to do. Because it's important.

Anna (49:56)
it is. it, to me, it's one of the kind of the pivotal shifts that will move us forward and out of this weird stagnant period where everyone is looking at someone else and going, you're the problem or you're the problem. Like, actually, a big shift like that of going, here's your gift, fly with it. Here's your gift, fly with it. Here's how we can make a workplace work for you.

Brandy (50:14)
your brain.

Anna (50:25)
amazing, go do your thing. Like, I got my current assistant sent me a thing going, this piece of work you did was brilliant, Anna, but why were you writing like a workbook at like 1am? I was like, because I'd slept all day, because I'd been really ill and I woke up with the genius idea and the energy to do something about it. Like, amazing that I came up with something magical. If I can do that as a self employed person.

and then be like, yes, I made a brilliant thing. But if we could unlock that kind of resourcefulness, creativity in employers, because it's not the employees, they've already got that. It's the employers giving them the scope, the support, what they need to shine. Amazing.

Brandy (51:07)
Yeah.

Yeah, and be uncomfortable with what's uncomfortable. Be okay with it. And yeah, that's what we have to teach people to do. Be okay with being uncomfortable, doing something different. Make it look different. You don't have your 9 a.m. Monday morning meeting. I mean, was it really that important to have the exact same meeting at 9 a.m. Monday, every Monday morning for the last 45 years?

Anna (51:20)
Mm-hmm.

Yeah.

Brandy (51:43)
I don't think so. If we want to evolve, if we want to change, if we want to be better, we got to do better. We got to change. Be OK with it. You always hear workplaces talk about, we need employees who are resilient and open to change. Well, I know somebody who's resilient and open to change, and that's every single chronically ill person I've ever met in my life. Just let us do us, and trust me, you're going to see some good stuff.

Anna (52:08)
Okay.

Mm-hmm.

Brandy (52:14)
Because I've done some good stuff in some very weird ways. I've done complete financial analysis and everything sitting in a hospital bed. OK, guys, it looks different. But you know what? It got done.

Be good with it. I love that thought. So what are we gonna do next, Anna? How are we gonna solve this problem?

Anna (52:39)
Well, obviously everyone should come get coaching with me.

Brandy (52:43)
That's, that is a good start coaching audacious. is it? What is, was trying to think. I only say it a million times. I'm tongue twisted now. Audacious coaching.

Anna (52:49)
Yeah.

Yes, the audacious and is my company. But I think the the the audacious part of it is it's to me the where we we start that the people that I work with are the ones who are saying, you know, I do have something to offer. I do have a thing that I've changed this corner of the world. I just need someone to help me kind of work out how to overcome.

this challenge or how to actually step forward and say, hey, I've got this big idea and get it happening and get it happening in a way that is sustainable for them. So a lot of the work that I do is based around the idea that you don't have to do it like someone else. You have to trust yourself, value yourself enough to do it like you.

Brandy (53:33)
Mm-hmm. Yeah.

Anna (53:53)
And I think that applies whether you've got a chronic illness, whether you don't have a chronic illness, but you are shy. whatever, whatever your challenge is, I think if we work out how to do it like you and then have the tools, the steps, the mindset to be able to follow through on that and to connect with other people who are doing that, then like I say, we hit this critical mass where

Brandy (53:59)
Hmm.

Anna (54:22)
things start to change where we see bold action. There's a completely outside of the chronic illness space. There's a French court case going on at the moment, a woman called Giselle Pellico. It's a horrific case. was raped by over 50 men in her town. It's...

a wild case. But the thing to me that's really audacious is that the judge offered her the opportunity to have a closed courtroom so that no one would be, they were like, to protect your dignity. She's 76, I believe. And she said, no, I want this to be an open courtroom. want all of the rapes have been filmed. She was like, I want that footage shown in this open courtroom.

and she stands and she watches it every day because she's like, this is my way of doing it authentically to go, you will witness what happened to me.

I'm not saying everyone has to put their pain on show like that, but to her, that is her taking a stand of going, this is how I do it my way. Another of my clients that I was working with today, her way of doing it her way is that she took two months off because she has an autistic daughter and she wanted the summer holidays from school. She didn't think about business. She wanted to focus on enjoying the hell out of her daughter over the summer. That's doing it her way.

And she modeled that to her daughter and she said that her daughter said to her, mommy, I wished on a shooting star that our relationship would improve and it has, and that's made me really happy because I wanted our relationship to improve, but also I wanted to see whether wishing on shooting stars worked.

That is what doing it her way is like. Me doing it my way is sometimes working at 2 a.m. because I've slept all day, sometimes doing it held together by sports tape, sometimes ranting on a podcast, sometimes quietly writing something, using all my skills. Whatever doing it your way is, if you have the support, you have the network of people uplifting you as well, then...

you make change in the world and that ripples outwards. That inspires someone else to make change, not because you've told them how to do it, but they've seen you do it your way. They've seen, I don't turn up to it for anyone who's watching this in a visual format. I'm here in dungarees with giant daisies all over them. I'm never gonna be someone who power addresses their way like an executive coach will. I have.

bright pink hair for goodness sake. I am not a formal coach. If you're wanting a coach like that, I'm not that person's coach. But I show up authentically because I can be audacious in my anoness. And what I love about you, Brandy, is that you show up as Brandy. Like you are you. And the more we can feel safe and comfortable and empowered to show up as ourselves, whether that's in our disability, whether that's in our...

gender identity in our sexuality, our whatever, in our national identity, in our status as a southern woman or a northern lass in the UK, like whatever those parts that make you up are. Like if you can be rooted in that and love the twisty dark bits as well, like that for me is just as important is like.

learning to love my disorganization and the fact that I don't reply to emails in a timely fashion was a challenge because I've been taught I was wrong. I was doing it wrong.

But owning the hell out of that, owning who you are, how you do it, to me that is huge.

Brandy (58:35)
That's very well said. I really hope, actually, no, I know that we're gonna make change. And when we have somebody like you out there doing this work, coaching people to be themselves, that's how we're gonna get there. That's how we're gonna get there. And one day...

we're going to start to see people look at disability in an entirely different way. And, you know, just one step at a time, one person at a time, one company at a time, but I think we're going to do it and hard work. It's going to be worth it. Yeah, absolutely. Well, thank you, Anna. If you are interested in learning more about Anna, definitely subscribe to her linked in page. It's the audacious.

Anna (59:08)
Yeah, I have faith.

Brandy (59:23)
and of course you can also find her as Anna Knight on LinkedIn and your webs you have a website as well don't you that's it very easy to find I also put all of this information in the show notes my mind wanders sometimes but my notes never do so you can find this in the notes as well thank you so much Anna so much fun having you come back and hopefully

Anna (59:30)
I do, it's theaudaciousan.com and very easy to find.

Feel the pleasure.

Brandy (59:51)
We'll get a chance to do this again soon.

Anna (59:53)
I would love that.