Interview with Anna Knight

In this conversation, Brandy speaks with Anna, a chronic illness patient and caregiver. They discuss the challenges of being a caregiver while also dealing with their own chronic illnesses. They share their experiences of role reversal, financial struggles, and the emotional impact of being both a patient and a caregiver. They also highlight the similarities in the healthcare experiences of women with chronic illnesses in different countries. The conversation emphasizes the need for patient-centered research and the importance of self-love in activism. The conversation with Anna Knight explores the concept of bringing love into public systems and making change with love. Anna discusses the work of Love Audaciously and how they aim to incorporate love into areas like healthcare, policing, and violence reduction. The conversation also touches on topics like boundaries, self-care, and finding one's vision and mission.

• Being a caregiver while dealing with a chronic illness presents unique challenges and emotional adjustments.
• The healthcare system often fails to provide adequate support and understanding for both patients and caregivers.
• Women with chronic illnesses face similar experiences and struggles worldwide.
• There is a need for global change in healthcare to prioritize patient-centered research and address the financial and emotional burdens faced by patients and caregivers.
• Promoting self-love and easy activism can empower individuals to advocate for change and improve their own well-being. Love Audaciously focuses on bringing love into public systems like healthcare and policing.
• Boundaries and self-care are important aspects of making change with love.
• Finding one's vision and mission can make change-making feel easier and more fulfilling.

Transcript

Brandy (00:00.542)
Hi, this is Brandy Schantz and you're listening to Living Chronic. Today I'm here speaking with Anna. She is not just a chronic illness patient. She's also a caregiver with a lot of great insight and some new perspectives. So welcome Anna. Thank you for joining me.

Anna Knight (00:17.573)
Thank you for having me.

Brandy (00:20.426)
So one of the things I found so interesting about your story is, you know, you are a chronic illness patient. You have lupus. You actually have, like many people, you have multiple illnesses, Srogens syndrome is what it's called, right? I've heard it about a thousand times, but you know, we have what, how many autoimmune diseases are out there and then they never make a music for now?

Anna Knight (00:28.043)
Mm-hmm. Yep.

Anna Knight (00:38.543)
Shokun syndrome, yeah.

Anna Knight (00:45.548)
Hehehe

Brandy (00:46.826)
So it's amazing that somebody who gets to hear about these all day long still can't get it out of her mouth. But you also have a partner who is suffering from illness. So you're a caregiver as well. What was it like to have those tables turned?

Anna Knight (00:58.124)
Mm-hmm. Yeah.

Anna Knight (01:06.716)
So yeah, so when I met my partner, Mel was kind of my caregiver, supported me with a lot of my physical health needs. The pandemic hit, as it did so with so many people, and we both got COVID in September 2020. So before there are any vaccines or treatments or anything available.

Brandy (01:14.027)
Really?

Anna Knight (01:32.447)
in the UK and we didn't have that bad of a ride through COVID to be fair like the actual infection itself was okay but Mel's symptoms kind of progressed from there got worse and worse so Mel got a long COVID diagnosis which has now turned into a fibromyalgia diagnosis.

Brandy (01:55.847)
As they do.

Anna Knight (01:57.543)
as did him. And it was a real adjustment process for us of going like that role reversal, both in terms of how, how it was just physically divvying up the tasks, things that Mel used to do to support me, then Mel couldn't support me with so I was there going, oh, okay, now who's gonna do them?

what do we drop because there were some things that we just couldn't keep up to the same standard. But also, I think for Mel in particular, that emotional thing of going from being the one giving all the support to suddenly being the one needing the support, not being able to do the things that he used to do for me, that was a really hard adjustment process as well.

Brandy (02:50.35)
Mm-hmm. Yeah, I think, you know, I've talked to so many people, and I think many of us realize sometimes not until it's a little too late, but it's very difficult not to begin to completely identify with your illness or as being a sick person because it has consumed your life so much. So to have those tables turned and be a caregiver, which is also an extremely difficult job,

Anna Knight (03:07.653)
Mm-hmm.

Yeah.

Anna Knight (03:20.655)
Hmm.

Brandy (03:22.46)
I think it presents its own confusion and almost identity crisis. You're the caregiver, now you're the patient. You're more the patient, but now you're also a caregiver. How do you struggle with that?

Anna Knight (03:34.06)
Yeah.

Anna Knight (03:37.807)
I think one of the things that we had going for us is that, oh, my cat has come to join, that I'd already been through the process before. So I'd done a lot of the processing of what it was like to have lupus, I'm a wellbeing and mindset coach. So I've done a lot of work on kind of not identifying with myself as lupus-haver, but kind of living alongside my lupus.

of how to come to that balance. So I think I could help Mel with that side of things, like Kim having me there to kind of go, oh hey, I've spotted, this is, might be what's going on for you right now, like remember this isn't gonna be like, you at your worst, it's not how you're gonna be every day, there'll be good days, there'll be bad days, there'll be crash days, and that's all just part of the process. I think in some ways that was really...

Brandy (04:10.102)
Thank you.

Brandy (04:20.264)
Yes.

Anna Knight (04:35.967)
an advantage that we had. But there were a lot of times as well, like when I was having a flare, when I was really not feeling very well, and we were kind of looking at the chaos that surrounded us, just going, like normally where the person who's in the carer role compensates when there's two of you who are not well, that's this whole unique challenge of just going, well, there's no one to step up now. Like, what do we do?

Brandy (05:04.566)
Right. You know, I feel you because my husband who also served your, look at the kitties, you know we're animal friendly on this podcast. I've got Sunny in my lap as usual. She can't live without me. This is the best part. I can't tell enough people, if you don't already have an animal, get an animal. That'll help. That's so good, isn't it? But yeah, you know, it's interesting. My husband's been having some GI issues as well. And you know, it's funny.

Anna Knight (05:12.323)
Yeah.

Anna Knight (05:23.183)
culture

Anna Knight (05:31.757)
Mm-hmm.

Brandy (05:35.178)
You know, the mentorship seems to be working really well on your end. On my end, my husband's watching me go through everything. And I see him in the same denial I was in and I'm like, honey, you're in denial. And it's like, no, you've watched it happen. But yeah, it's, you know, we go on. I think, oh my gosh, what if we both have Crohn's disease? That's going to be a nightmare because you're so used to having somebody who could pick up the slack when things are bad.

Anna Knight (05:57.121)
Mm-hmm.

Anna Knight (06:02.348)
Yeah.

Brandy (06:03.518)
So it really kind of changes the dynamic and it's like, well, what do we do now?

Anna Knight (06:07.151)
Mm-hmm. Yeah, and I think because I got my diagnosis before I met Mel, so I was in a previous relationship then, and that relationship was an abusive relationship. There's no putting lipstick on a pig. Like, that's what it was. What that meant is that I'd kind of had that model of how not to support your partner through it.

Brandy (06:15.618)
Thank you.

Anna Knight (06:33.683)
And so that kind of gave me in some ways like a blueprint of how I wanted to do things like knowing how I wanted to support Mel, how I wanted to show up for him. I think in other ways what it meant as well is that I kind of overcompensated a bit like I wanted to make sure it was the smoothest ride through a disability diagnosis anyone could have like I wanted him to.

Brandy (06:55.626)
I could see that.

Anna Knight (06:59.119)
to feel the most loved and supported. And sometimes what that meant is that I wasn't, wasn't always giving him the space to try things for himself, to do his own process. Like sometimes there was a bit of overcompensation on my end as well. I think, because of my job as well, like what I do is I support people to make changes in their lifestyle. So like, there was a little bit of that. I'd be like, Mel, I'd have to be like, you're in Coachman again, babe. Like.

Brandy (07:15.222)
Yeah.

Anna Knight (07:27.047)
step it back like remember you're your fiance you're not coach anna right now because it is so tempting to just be like oh my god i know how to help someone do this like and just being like yeah that's not my fault here that's not what i'm here for

Brandy (07:27.244)
Get out of it.

Brandy (07:43.494)
And yes, and I think it's difficult, you know, when you've been through it all. And of course it's taken us years to get to where we are today. You want to get other people there right now, right now, because the past 10 years have been hell. Let me help you get there right now. And you know, sometimes you just have to let people go through their own process. Sit there, let it happen. Tell them you're there when you need, when they need you.

Anna Knight (07:51.256)
Mm-hmm.

Anna Knight (08:02.572)
Yeah.

Anna Knight (08:07.807)
Yeah, and I think just reassuring him that it didn't change how I felt about him because such a big part of his identity, like he's a caring guy, he's a doer, he's a fixer, I think a lot of his identity was on how he supported me. That just being there showing off and being like, like I love you exactly the same as I did pre-COVID, if not more, because we've grown together, we've been through

Brandy (08:14.007)
Yes.

Brandy (08:25.91)
Thank you.

Anna Knight (08:37.115)
a new trial, we've discovered new things about ourselves along the way and that is, you can kind of, for some people it's the thing that shows the cracks, drives the wedges apart. For us it's been something that's brought us closer together so I think we've been really fortunate in that respect that it has helped us kind of get that new level of intimacy that kind of, yeah, it brings a lot of flavour to our life.

Brandy (08:37.43)
Yes.

Brandy (08:50.583)
Yes.

Brandy (09:07.45)
Yeah, you know, it's so important though. I think we always worry about our caregivers as much as we worry about ourselves because we know how difficult it can be. And of course we worry, is that person going to love us the same? I've been through it too, you know, we all go through it. Oh my goodness, when that man married me, I was perfectly healthy. Now look at the mess he inherited. But you know, that reassurance, you know, that's probably the best advice I think for caregivers. Just reassure your...

Anna Knight (09:28.676)
Mm-hmm.

Anna Knight (09:34.176)
Yeah.

Brandy (09:35.454)
loved one that you still love them the same as you did when they were healthy.

Anna Knight (09:39.979)
Yeah, and that was something that was very absent from my experience of getting diagnosed. I started developing symptoms around the time that I got in a relationship with my ex-husband, but I really got sick about halfway through our relationship. My cat is having a wonderful time here dancing around. But he really did.

it did change how he saw me, how he interacted with me. Like I didn't have that reassurance. And as the person who was the sick person, it was soul destroying knowing that he saw me as a problem, as an illness, as a bag of symptoms to be kind of frustrated at, rather than a whole person who just happened to be on bed rest at the moment. Like...

Brandy (10:36.73)
Right. And it's already difficult enough going through an illness, but to have that on top of it really is traumatizing.

Anna Knight (10:44.295)
Yeah, definitely. Like, I have a complex PTSD diagnosis now and a large part of that, and a large part of what kept me in that traumatic relationship as well, was my disability. Like, there's a lot of evidence that disabled people are much more likely to be in abusive relationships, whether we're disabled beforehand or kind of trauma itself leads to disability. And then...

Brandy (10:58.69)
Thank you.

Anna Knight (11:13.523)
it makes us especially vulnerable. Like one of the big fears I had was the, I can't survive without the care that my ex-husband was providing. So yes, it was very traumatic as a relationship to be in at times. Yes, there were many, many toxic things going on, but I was reliant on him for a certain level of day-to-day caregiving that I had to decide when I left to go without. And that was really scary.

Brandy (11:42.958)
frightening. I can't even imagine. Because it is difficult. You know that you are a dependent person on some level. And here in the United States, for many, their spouse, no matter how abusive, may also be their ticket to healthcare. And where do you go, you know, when you're depending on that healthcare just to stay alive?

Anna Knight (11:51.043)
Mm-hmm.

Anna Knight (12:06.859)
Yeah, and I think even in the UK where we have the NHS, it's still that the benefit system is it fit for purpose. It doesn't give disabled people enough to live on. So if I couldn't work, I was dependent on him for food. If I, like there were times where I really thought my job was under threat because was I well enough to carry on working? But there was that pressure of can we survive on one salary?

Brandy (12:11.831)
Mm-hmm.

Brandy (12:19.275)
Right?

Anna Knight (12:36.031)
knowing that the benefit system is not fit for purpose. There is that real kind of basic level of needs of like health, healthcare, housing roof over our heads that it's really entrapping for a lot of disabled people.

Brandy (12:55.95)
because, and especially, I don't know about the UK and the US, you really kind of have to show that you're in poverty before they're going to give you a benefit. And you know what? I just don't even want to get there. As a matter of fact, I would prefer to always work, is what I've always said. And we just don't, nobody, none of us, and that's the interesting thing.

Anna Knight (13:05.227)
Mm-hmm. Yeah.

Anna Knight (13:11.759)
Mm-hmm.

Brandy (13:19.914)
I've learned in this podcast, I have worked in an international environment in the past and I've learned a lot about similarities and differences between different countries. What I've learned so much about doing this podcast specifically is disabled people, no matter where you are in the world, we seem to have a lot of the exact same experience. UK, US, Germany, doesn't matter. We seem to have very similar experiences.

Anna Knight (13:45.931)
Yeah, my sister in Australia is going through a very similar thing at the moment. She's been diagnosed with Sjogren's syndrome recently, which in some ways has been lovely for her because she's been able to say, hey, sis, like, what's the deal with Sjogren's syndrome? What do I do? But on a very another real level, like listening to her talk about what do I do if I can't work and we're relying on just one income, what do I do about this? What do I do about that? The challenges are the same globally. And

Brandy (13:53.998)
then.

Anna Knight (14:16.995)
That's something that I think we really need to look at as a global society of how we see the rights and needs of disabled people, how we treat our disabled citizens so that we are treated equitably, not just going what they've got enough to live on, that's good enough.

Brandy (14:22.05)
Mm-hmm.

Brandy (14:40.05)
Yet we shouldn't have to live in poverty just to get some help.

Anna Knight (14:44.319)
Yeah, I had a conversation with someone a few weeks ago where we were talking about food bank usage and they were saying that someone they knew was delivering food for a food bank and they were very upset because the people had a big television.

Brandy (14:53.102)
I'm going to go ahead and turn it off.

Anna Knight (15:07.359)
And I was like, you shouldn't have to pick food or the basics of entertainment that in a Western society we take as for granted as your house has a television in it, if not multiple televisions.

Brandy (15:07.901)
We love you too!

Brandy (15:16.276)
and

Brandy (15:25.818)
Yes, multiple internet, computers. This is a very modern society. How do they expect us to live? And despite all of that, when I'm in a bad flare and I'm feeling sick, you know what gets me through the other end? Real housewives. That's the stuff you don't feel good. Trust me on that. That's healing. Now, let's talk about the stuff that's healing beyond medicine. Dogs, cats, housewives. The three necessities.

Anna Knight (15:27.902)
Mm-hmm.

Anna Knight (15:39.243)
Hahaha!

Anna Knight (15:43.628)
Yeah.

Anna Knight (15:52.611)
Exactly, like where would we be without Netflix?

Brandy (15:56.538)
I can't live without it. Sorry, guys. You know, give me something here. It's just so amazing. And you know, something else I found amazing when we were speaking last week before this reporting, your diagnosis, again, two different places, you're in the UK, I'm in the US, such a similar experience to what I and so many other chronic illness patients, especially women go through, especially women.

Anna Knight (16:22.776)
Mm-hmm.

Yeah.

Brandy (16:25.986)
And I talked about this over and over again, 80% of autoimmune patients are women. So we do get the brunt of this. And you didn't really find out that you had lupus until you stood there in an office and said, tests now.

Anna Knight (16:31.929)
Mm-hmm.

care.

Anna Knight (16:40.847)
Yeah, to the point I'd taken a list of symptoms in. I'd been having symptoms since I was 16. I'd reached 25, 26 and things were getting a lot worse really quickly. I took a list of symptoms in a whole A4 page that I typed out with like, this symptom started on this date, now it looks like. And at the very bottom I'd written, is this lupus? Because you know, I could Google. Like, it wasn't subtle what was going on with me.

Brandy (17:11.086)
And let's be frank, I don't know if you've seen it, but I have with my own eyes seen in a doctor's office, the doctor with his phone, Googling as I'm speaking. Let's not pretend that we're selling now.

Anna Knight (17:19.264)
Yeah.

Anna Knight (17:22.567)
Yep, exactly. So I had this whole, I'd like I was prepared for this appointment and it got written off as anxiety. It was like, well you seem very anxious to have done all this and it's like, well yeah, I'm 10 years in and I'm just getting sicker and no one is listening to me. And so I did the, I'm not leaving this office until you do the tests.

Brandy (17:41.858)
Thank you.

Anna Knight (17:48.783)
and they called my bluff a little bit and I sat in the chair a little bit and then they were like, fine, we'll order the tests. But it took them another month for me to get another new symptom. I got pericarditis. So the lining of my heart became inflamed. I tried to go back to work after I was working at school. It was the end of the summer vacation, tried to go back to work and my heart was inflaming and rang my GP to say

Brandy (17:54.615)
Mm-hmm.

Anna Knight (18:18.755)
feels like I'm getting punched in the chest every 20 seconds. This is quite scary, what do I do? And the GP was like, oh, that'll be pericarditis because of your lupus. And I had to be like, I'm sorry, what? What, lupus? That they hadn't even bothered informing me of the test results that had identified an autoimmune condition, let alone initiated the process for treatment or referrals to rheumatology, because to them it was seen as.

Well, she's cooked this song. It's livable. She's not dead yet. Like...

Brandy (18:51.531)
Mm-hmm.

Anna Knight (18:52.611)
how is that good enough that because I'd survive 10 years, I didn't deserve that urgent care in the same way that if, like not to be stereotypical, but if a man turns up with a tingly left arm, he gets sent to hospital because they think he's having a heart attack. And yet I was there going, my legs won't wait there, I have a rash spreading all over my body, I can't go out in the sunlight, like.

I'm in constant pain. I'm so fatigued. I can barely move. Are they like, Oh, yeah, but you know, are you dying? Ridiculous.

Brandy (19:31.138)
It's amazing. And it's the same story. US, UK, it doesn't, we all go through it. I remember I've told this story quite a few times because it, I mean, it made me mad. You know, I had lost my ability to walk. I was, you know, I had these severe brain issues, forgetfulness. I couldn't speak sometimes. So I couldn't work.

Anna Knight (19:33.263)
Mm-hmm.

Brandy (19:54.25)
You know, I was having to hand everything over to somebody to take care of that for me. And I told this doctor, Hey, I can't work. And I'm meaning this, like fix me yesterday. I need to get back to life. And he said, Oh, so let me put this in my notes. So now you're, what do we say? A homemaker? And I thought, Oh my God, this man might die today. If my husband had come in the office and said that exact same thing,

They would have, well, we got to get you back to work immediately. Let's, let's figure this out. But me, oh, are you a homemaker?

Anna Knight (20:24.938)
Mm-hmm.

Anna Knight (20:30.343)
Yeah, and that's the thing. I was there. I was a professional woman. I was managing a team at work. I had like master's level education, very competent, and they were like, oh well, you know, maybe you're working too hard. And it was like, in what other world would a 25 year old be told, oh no, you're working too hard. You just need to chill a bit. You're quite, quite highly strong.

Brandy (20:54.766)
Yeah.

Anna Knight (20:57.583)
I was like, yeah, I'm highly strong, but I like stop working. Like, you'd be highly strong.

Brandy (20:58.059)
Yes.

Brandy (21:01.73)
You expect me?

Brandy (21:07.29)
It's just amazing to me and there's just no sense of urgency when you're going through this. We see it. This is my life. I have to get back to living. But so often doctors, other medical professionals, they're just on their own timeline. Well, maybe we can order some tests. I think we can get you in three months. Three months? What world do you live in?

And it gets worse as you get older for some reason, you know, I'm having my kind of midlife thing happening. I'm like, I'm losing days. I would.

Anna Knight (21:34.609)
Yeah.

Anna Knight (21:39.491)
Mm-hmm.

But as soon as they can attach the word menopause to it, that becomes the catch on net for so many symptoms, right? Like, if it's not weight, if it's not anxiety, it's menopause. Like, the only three illnesses women suffer from.

Brandy (21:46.883)
It's falling.

Brandy (21:59.662)
Clearly, clearly, what else could it possibly be? I mean, we've got to.

Anna Knight (22:03.791)
And I don't know about, like, I don't know about in the US, but here in the UK, even when you reach, like, I've had rheumatologists who said to me, oh, it's your weight. If you lost weight, your symptoms would be better under control. And having to go, okay, how do you suggest I lose weight? When I am struggling to walk, I'm trying, I'm putting all my effort into working so that I keep a roof over my head. Like,

When am I gonna find the ability to lose weight? And actually, is my weight having a dramatic impact on the pain in my fingers? Like are my hands so fat they're weighing me down at this point, or are you actually being a little bit prejudiced?

Brandy (22:51.178)
Yes. Well, you know, I had this, you know, a similar-esque experience when I was going through my stuff, but it was the opposite. I walked into this endocrinologist office and I said, Hey, and when I say I walked in, I mean, I came in with a cane and kind of dragging and I said, Hey, I was training for Ironman Chattanooga. Next thing I know, this mess. And the doctor ran all these tests on me.

And then after he was done, he didn't find anything in his test. But he said, but you know what? I know there's something wrong with you because you know, you're fit, you're, you're in shape, you know, so there must be something wrong. Normally I get people in here who are fat and lazy and I'm like, get off the couch and put down the bag of chips. And I thought, of course later I would find out it was my humera causing this. Which by the way, doc, if you would have looked away from my fit body and down at the chart.

Anna Knight (23:41.272)
Mm-hmm.

Brandy (23:48.67)
you would have seen the humira. And I kept thinking, and if I was overweight, he still wouldn't have looked at the humira on the chart, you know, the actual problem, and would have just gone straight to, well, gotta lose weight.

Anna Knight (24:01.343)
Yep. Such a snap judgment, such a physical, that must be it. And actually, like in my case, when I demanded a second opinion, which took me three years to get, they found that I had undiagnosed hypermobility, and that my joints kept dislocating. Nothing to do with my weight at all. They just missed a part of my diagnosis. And it was only I got sent to a physiotherapist who was like, Oh, did you

Brandy (24:13.759)
of

Brandy (24:20.75)
Yes.

Anna Knight (24:28.695)
Did you know you're hypermobile? And I was like, oh, but I don't meet all nine of the points on this thing that the doctor did. And they're like, oh yeah, that scale is outdated. Actually, look how bendy your spine is. And I was like, oh, maybe that's causing my neck and shoulder pain.

Brandy (24:47.598)
Jeez, so much that is missed. And I don't even know why sometimes, other than I just think for some reason, they don't wanna listen to women. They don't wanna hear us out. And I've said it a million times, and it's interesting to learn that it's very similar in the UK. You probably wouldn't have to worry about me needing benefits so much if I would get the healthcare I need immediately so that I can just go back and get back to life.

Anna Knight (25:12.851)
Yeah.

Brandy (25:15.838)
You know, so much of my time out of work had nothing to do with me per se, and everything to do with the doctors who were taking their time, not doing the correct tests. Me having to go see two, three, four doctors saying, Hey, you need to do this before he gets somebody to do it.

Anna Knight (25:30.671)
Yep.

Brandy (25:32.802)
And here we are, together, worldwide, women, all experiencing the same problems.

Anna Knight (25:40.811)
Yeah, exactly. And what frustrates me the most is it doesn't seem like it's changing.

Brandy (25:47.846)
No, it really isn't. And even among women sometimes, you know, I'll try to, you know, pick a female doctor and sometimes it's just as bad. The good news, I think I've been able to see at least here in the United States, the younger doctors are far more likely to really listen to you. I think they're doing something different in med schools or maybe

Anna Knight (25:51.535)
Mm-hmm.

Anna Knight (26:12.687)
Hmm.

Brandy (26:14.35)
Maybe these young doctors have grown up watching, as somebody else mentioned, maybe it's all the medical shows, where they see that the doctor just didn't listen to something, was too busy doing something else, and then in comes the nurse and she saves the day. Maybe they saw that so many times that they thought, you know, maybe I should talk to this patient.

Anna Knight (26:35.275)
I did think that when I got my lupus diagnosis there was a little bit of that house MD moment of like, is it lupus? I wondered if the doctor was like, it's never a lupus! Because that's exactly what my brother said to me as soon as I said it was lupus that they'd finally got the answer. He was like, haha, what is it really? And I was like, no, no. It's actually lupus this time. But you know the other thing I think that plays into it a lot, Brandy, because my

Brandy (26:53.866)
Rolly lupus.

Yeah.

Anna Knight (27:02.191)
training, I'm a speech and language pathologist, so I kind of I've gone to a medical education as well. Is that I think a lot of the problem is that the good doctors burn out, the ones who do go above and beyond for their patients, the ones who are wanting the best who are trying, they get exhausted by working in a system that doesn't care that is underfunded in the UK for sure is underfunded, that is understaffed.

Brandy (27:14.986)
Yes.

Anna Knight (27:31.223)
they do their best until they're on their knees and then they can't anymore. And what you're left with after a certain age is the ones who've emotionally checked out. The ones who are complacent, the ones who skate through the day by going, oh, she's fat, don't need to do anything about that other than prescribe. Like I was offered weight loss tablets where they were told, oh, you'll lose the tablets because it gives you constant diarrhea. And I was like, I have IBS. I don't need that. I'm good.

Brandy (27:41.175)
Yep.

Anna Knight (28:00.683)
Thanks, like I would quite like an answer to why my hands hurt not to just someone say would you like to lose weight? through tablets that make your body void all fat like How would that be a solution at all? But it's quick. It's a five-minute consultation not a 20-minute consultation

Brandy (28:14.167)
Thank you.

Brandy (28:21.471)
get them in, get them out. That's the biggest difference. The same here in the United States. And I've learned these doctors, they have quotas they have to meet. Over here, it's a for-profit system. So whoever's running the practice, we have a lot of chain practices here that are nationwide, the hospitals are the same. Your doctor, you have to see X number of patients every day. You have to do X number of.

Anna Knight (28:31.056)
Mm, yeah.

Anna Knight (28:46.121)
Yeah.

Brandy (28:46.99)
doctors every month you have. You have all these metrics that you have to hit, which is insane. Why does my doctor have a metric for number of colonoscopies he has to perform? What if all of his patients are young? This is silly. So we have the same problem, a little bit different. I noticed very quickly, I ended up switching all of my medical care to government health care. Specifically, VA is where I'm doing the majority of my...

Anna Knight (28:59.287)
Ridiculous.

Anna Knight (29:11.791)
Mm-hmm.

Brandy (29:16.982)
things, whatever it may be, with the exception of a couple of doctors I see at Walter Reed, which is our military hospital. But I immediately noticed that these doctors take time. My primary care at the Veterans Affairs Hospital, he just blocked off 45 minutes for me one day. He said, let's just start going through this. Let's figure stuff out. And he was writing referrals. We were talking through what I was experiencing. And I realized nobody.

Anna Knight (29:28.175)
Yeah.

Anna Knight (29:35.235)
Mm-hmm.

Brandy (29:45.13)
in the United States of America with, unless you're paying a lot of money for say a concierge, it's that kind of care. So it's the same.

Anna Knight (29:49.359)
Mm-hmm.

Yeah. And it's the same here, the doctors get 10 minutes in a general practitioner's office, they get 10 minutes to see you. And in a lot of doctors offices, they have you're allowed to bring one symptom, one problem. And it's like, what about the complex people like us who have 15 problems? Do we make 15 appointments? Like...

Brandy (30:07.082)
Yes. Yes!

Brandy (30:13.43)
another appointment but it took me three months to get this one. Right? Yes same and you know it's interesting now you know we're not going to have time to go into this we'll have to make a whole another episode maybe even a series about it but how quickly they want to just dismiss you and prescribe a drug.

Anna Knight (30:16.931)
Yeah

Anna Knight (30:31.907)
Mm-hmm. Yeah.

Brandy (30:33.566)
You know, obviously I have a very specific viewpoint because I had a very severe reaction to a medication I was on. I had actually gone back to my prescribing doctor and said, Hey, I don't think this is working and it's making me feel like this. And he said, no, you're wrong. Stay on your medication. And then of course it ended up causing a very severe reaction and lifelong problems. Thank you doc. Um, but you're, you're seeing it now. I don't know if you guys have the same craze over in the UK, but in the U S everybody's on a Zempic.

Anna Knight (30:55.682)
Mm.

Anna Knight (31:03.695)
Hmm.

Brandy (31:04.974)
There's problems going on Zympic. Well, it's already, you know, I think, did you even ask about the side effects? It just got approved by the FDA not long ago. Take it from somebody who got an experimental drug that started adding on black box warnings year after year after year, because they're like, oh, we didn't know that one was happening. Wow, now our patients have multiple sclerosis. Well, ain't that a bitch, you know? I mean, but nobody told me upfront, you know? But there's so much

Anna Knight (31:15.168)
Mm-hmm.

Anna Knight (31:31.558)
care.

Brandy (31:32.406)
Because they have 10 minutes. So what are you going to do? Prescribe you a drug.

Anna Knight (31:35.191)
Yeah. And then when you come with side effects, I will prescribe you a different drug for the next slot of side effects. And then, oh, that's had side effects. Oh, here's another drug to manage those side effects. Like you end up on like chain reactions of things where you're like, the drug that manages one thing causes this side effect. Then you're on this, but that causes this side effect. And actually, one thing is dealing with your chronic condition and the other three things are dealing with the impact of that medication.

Brandy (31:39.85)
Yes. Now, let's go home.

Anna Knight (32:03.159)
But there's no look at like, so for me, kind of with my background in being a survivor of domestic abuse, there's no look at, hey, how's your trauma affecting you? Because like, from a medical knowledge standpoint, we know that trauma increases your cortisol, your adrenaline in your system, chronic cortisol and adrenaline levels cause inflammation. Inflammation causes autoimmune conditions.

Where's the trauma therapy and all this? Where's the somatic healing work? That, like, they have evidence works. But yeah, you don't get funding from a pharmaceutical company for it. So why would we prioritize it?

Brandy (32:41.454)
Promise.

Brandy (32:49.018)
Oh, how depressing that we have the same problems in two different countries. Who figures this out? Can we get an international body together to say, hey, gotta do something, my goodness. And it's interesting, I've done a lot of great podcast interviews with people who have gotten better through that kind of therapy. I've spoken with medical professionals who deal almost entirely in

Anna Knight (33:03.819)
Yeah.

Anna Knight (33:10.562)
Mm-hmm.

Brandy (33:19.342)
trauma and its effects on the body and chronic pain. And there's an interview that will be, I believe it's my next episode coming out with a doctor who has researched cannabis and many benefits of that. And you know, for somebody like me, somebody like you, you know, the benefits are amazing. He has done research.

Anna Knight (33:20.782)
Mm-hmm.

Anna Knight (33:34.251)
Hmm, yeah.

Brandy (33:48.734)
shown that Crohn's patients can get into remission with cannabis except you're not immunocompromised. Imagine what that could have done for us in 2020.

Anna Knight (33:59.023)
Right? Like, and this is what really frustrates me. And I do think you're right that it's about, like, not to get all anti capitalist here, but I'm gonna. Um, yeah. Yeah, but it's about who gets the money with cannabis. You can grow your treatment yourself. No one gets the money in that situation. With trauma therapy, it like there's a certain amount that you can DIY.

Brandy (34:09.846)
I'm not a capitalist. Trust me, I like nice things. What?

Anna Knight (34:27.703)
no one gets the money. And the thing that I think sits at the root of it as well is where the decision-making lies. So again, in my background in being a speech pathologist, I worked in autism research for a while and autism research is a really interesting place to work as a neurodiverse person.

Brandy (34:37.678)
So,

Anna Knight (34:50.327)
because what you see in the neurodiversity community is that there's the traditional research which has been done by neurotypical people. And there's this growing field of autism research that's been done by autistic people. And the differences in how those treatments are focused, that it's not about cure, it's not about like symptoms management, it's about quality of life, it's about...

Brandy (35:05.762)
How amazing.

Anna Knight (35:18.755)
how you feel about yourself, about self-esteem, about preventing suicide, about helping young people who get their diagnosis accept and understand themselves and value their skills as an autistic people. And you think, oh, it like, look at what the autistic community is showing us about when the patients at the center of driving the research priorities, the focus is different. And I think that like the autoimmune

Brandy (35:42.766)
That's.

Anna Knight (35:46.543)
community has a lot to learn from that of like, lupus UK do amazing work fundraising to fund lupus research. But that's, it's not far enough, we need lupus patients on those boards are like talking on the house, like universities and in the hospital research hospitals go, this is what we want you to focus on. This is what like, don't just tell us, Oh, actually, this is the

Brandy (35:49.518)
Yes.

Anna Knight (36:15.779)
the drug that will help your fatigue a bit more than the other one. Like find out what actually helps fatigue in lupus. Find out what actually helps us deal with our photosensitivity so that we can exercise, we can get out. Like do the stuff that matters to the patients. And you'll probably make the breakthroughs in the other areas as well, because the science underlying it will be the same, but you'll be doing it from a standpoint that is actually...

patient-centered and I think we've got to step up our activism and find the energy from somewhere like find the spoons to get in these rooms because otherwise we're just going to carry on being given humira and given blackenil and told to deal with the fact that all our hair has fallen out and our stomach acid is out of control.

Brandy (36:52.738)
Yes.

Brandy (37:11.286)
That's, I can't think of a better way to say it. I can't think of a better way to draw to a close because that's what it's about. Make this patient centric. Give us a say, put us in the room where it happens. And you are doing a lot of work to help that out as well. You have a business, you have a podcast. Tell me a little bit about that before we go.

Anna Knight (37:32.576)
Yes.

Anna Knight (37:36.703)
Yes, so my business is actually links on really well. It was a very nice segue. I help activists to do their activism in a way that feels easy. So, so many people's change-making missions comes from their lived experience. I started out being a domestic violence activist because I experienced domestic violence. I do disability activism because I'm disabled. Like our lived experience takes us to these change-making paths. And

Brandy (37:53.816)
Mm-hmm.

Anna Knight (38:06.095)
kind of what we've learned about ourselves through the conditioning that we're taught. We're lazy, we're this, we're that. It gets in our way. So I help people unpick that about themselves. I help them get back to self-love and easy activism. And so my podcast is with a public health doctor in the UK as well, looking at the power of love. So I look at it from a self-love perspective of how you can do your activism fueled by self-love.

Brandy (38:12.942)
Mm-hmm.

Brandy (38:29.734)
Mm.

Anna Knight (38:35.155)
And Rachel brings how we can bring love into public systems like healthcare, like policing, like violence reduction, so that that's informed by love as well. So we're called Love Audaciously and we launched quite recently, so you'll be joining us at the beginning of our podcasting journey. But our conversations are all about things like boundaries, love as an action, putting

aside thoughts of being selfish to root your self-care in everything you do. How to find your vision, how to find your mission, how to make change making easy so that it doesn't feel like, oh my God, to get in that room where it happens is going to be a full-time job. It's going to exhaust me. Like to do it with fun and ease and grace and just make it feel good. Because that's what we need at the end of life is to feel loved and feel good.

Brandy (39:24.013)
Thank you.

Brandy (39:34.706)
Yeah, absolutely. I really love the work you're doing. I'd love to have you back. Maybe even your partner, we can do a whole nother interview or two or three or a series. So much work to do. I just love it. So love.

Anna Knight (39:47.395)
I would love that.

Brandy (39:54.174)
Audaciously. My speaking today has been a little niff, but it's okay. It happens. I always tell people I do this thing when I feel good. I do this when I don't feel good. So, um, you know, it happens sometimes. So I've been having trouble speaking, but I got it. Love audaciously and thank you so much. I can't tell you how great this is and I can't wait to do another and for us to work together and make the change.

Anna Knight (39:55.42)
Love audaciously.

Anna Knight (40:06.253)
Yeah.

Anna Knight (40:13.868)
Yeah, it's been a pleasure

Anna Knight (40:24.003)
I love it. Amen.

Brandy (40:27.12)
Thank you.

Anna Knight (40:27.983)
Thank you for having me.