0:04

Knowing that on one level, maybe I could do

0:06

the thing. So the

0:08

people that are struggling with this, they have that

0:10

too. So you being able

0:12

to support them in believing themselves and

0:15

in listening to their body and maybe

0:17

helping them track. Because tracking is a big part

0:19

of it. But that would be a

0:21

way to be supportive of like really helping them

0:24

come to accept. One of the treatments that

0:26

they used to recommend, by

0:29

used to, I mean recently, this is

0:31

still a little bit controversial. Like I

0:33

said, it was that graded exercise that

0:35

now they are not recommending for people

0:37

even long COVID with post exertional malaise.

0:40

It can be counter indicated. Right

0:42

to push yourself. To push yourself. Right. This

0:45

is not a good idea when you have it. It can

0:47

make you worse. But also

0:49

there was a CBT therapy that they

0:51

were really pushing and saying that there

0:53

was evidence for that. Again, the controversy

0:55

is that that was not good science.

0:58

You can certainly look into that yourself. But

1:01

I think where people are settling is the CBT

1:04

that they're talking about. CBT, meaning

1:06

cognitive behavioral therapy, was

1:08

helping convince them that it was in their

1:10

head. Right. Helping

1:13

them push past their own

1:15

internal barriers. That also

1:17

is contraindicated because in fact, that's

1:19

not the case. Now,

1:22

CBT therapy that helps someone accept what's happening

1:24

and understand it and get more in touch

1:26

with their body and listen. That's different. And

1:29

that's certainly welcome. When

1:31

you hear people push back about CBT therapy

1:34

for this, it's the kind of therapy where basically the

1:37

therapist is really trying to convince you that it's

1:39

in your head. It's terrible. Welcome

1:43

to Therapist Uncensored. Building on decades

1:45

of professional experience, this podcast tackles

1:47

neurobiology, modern attachment, and more in

1:50

an honest way that's helpful in

1:52

healing humans. Your session begins now

1:54

with Dr. Ann Kelly and Sue

1:56

Marriott. Let's

2:05

take a break and talk about our Spencer and Zach doc. I

2:08

have found Zach doc extremely helpful both

2:10

in my professional world and my personal

2:12

world. You know, finding a doctor

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or a psychiatrist that's available

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on insurance plans and highly

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2:22

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2:26

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2:29

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2:31

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2:33

no compromise. So don't go back to

2:35

that one doctor who makes you feel

2:37

uncomfortable or doesn't take you as seriously

2:39

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2:41

want you to check out Zach doc. It's a place where you

2:43

can find and book doctors who

2:45

will make you feel comfortable, listen

2:47

to you prioritize your health, you

2:49

can search by location, availability and

2:52

insurance. So literally, you

2:54

don't really have to make compromises because you

2:56

have so many options. Zach doc

2:58

is a free app and website

3:00

where you can search and compare highly

3:03

rated in network doctors near you

3:05

and instantly book them online.

3:07

So it's really great. You have tens

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of thousands of top rated doctors that

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3:25

especially in different states where you're not as familiar

3:27

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3:30

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3:32

go to zach.com/T you and download

3:34

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3:36

then find and book a top

3:39

rated doctor today. And

3:41

by doing it through our website

3:44

and adding slash to you, you

3:46

are really showing support for

3:48

our podcast. So that's zach

3:50

doc z o c d

3:52

o c.com/to you. Hey,

3:57

everyone, welcome back to therapist uncensored. I'm

3:59

Anne. And before we

4:01

jump in today's episode, we have an

4:04

exciting announcement. We have a conference that

4:06

Sue and I are putting on this

4:09

coming May 4th. And we're

4:11

really, really psyched about it, aren't we? We

4:14

could not do it without our partner

4:16

organization, Austin and Connection, who is sponsoring

4:18

us near and dear to

4:20

our heart, austinandconnection.org. Check them

4:22

out. But what we

4:24

are just really thrilled about is we're taking

4:26

all the stuff that Ann and I have

4:28

learned in clinical practice over the past 30

4:30

years. That's a long time.

4:34

And we timed that by two because

4:36

both of our separate clinical experiences,

4:39

everything we've learned on the podcast,

4:41

everything we've learned from all of our expert guests and

4:44

all the research that we did for the book. And

4:46

we're going to bring it to you live. We

4:49

invite you to join us from wherever you

4:51

are. We know that many people won't necessarily

4:53

be able to make it in person. But

4:56

if you can, this is the event to come

4:58

to. That's true. Some people have

5:00

asked, you know, when's the event for us to

5:02

actually fly in? And

5:04

if you can and you have the resource to do it, we

5:06

would love for this to be the one to do it. We're

5:09

going to also have a meet and greet Friday

5:11

night. It's more than a meet

5:13

and greet. Well, that's true. That's true. It's

5:16

our book launch party. The book launch

5:18

is Friday night. And so we're going to

5:20

have a gathering that should be a lot of fun, a

5:22

lot of ways to connect to people. And

5:25

then Saturday is a full day all day

5:27

conference. And another thing about the

5:30

conference and then we'll move on. But it is going

5:32

to be different. And we'll continue

5:34

to share details about that as we

5:36

go as it gets closer. But I'm

5:38

just it's not going to be just your ordinary conference.

5:41

We're going to specifically do

5:43

a deep dive into modern

5:45

attachment, how to apply it,

5:47

weaving in relational neuroscience, but

5:49

also really, really incorporating systems

5:52

and structures that impact how we

5:54

feel, both our development,

5:56

how we grow and how we see ourselves

5:58

in the world. but also our kind

6:00

of more immediate sense of security in the world.

6:04

So I'm really proud of that and I think

6:06

that that's really different than anything that's out there

6:08

right now. Well, we're also going to

6:10

have some group portions of

6:12

it. So active participation, not

6:15

just sit and receive,

6:17

but an active participation.

6:19

I'm also really excited about the

6:21

lunch component. Are we going

6:23

to give it all away already? Okay, okay. Okay.

6:26

No, no, no. Okay. So

6:28

we're going to have lunch together. I mean, you're not mandated

6:30

to. You certainly can go off site. But

6:32

that's too much togetherness. You get to take off.

6:34

Totally get that. But lunch is

6:36

included in the ticket and then right

6:39

after lunch, you'll have an option. One

6:41

is to just rest and do nothing, of course, but

6:44

as part of the conference, inspired

6:47

by the book, Lifting Heavy Things, which

6:49

is a book by a person

6:52

in the physical personal training

6:54

field about using

6:56

strength training as part of her

6:58

therapy and part of her treatment

7:00

of trauma and being able to use that with clients. We

7:03

are going to have a certified personal trainer join

7:05

us who is amazing and

7:07

works really holistically and you're going to absolutely

7:10

love her. And she's going

7:12

to lead us through some strength exercises, a different

7:15

way of embodying somatic work

7:18

and connecting us to our bodies and connecting

7:21

us to the strength that it's going to

7:23

take for us to continue to do this

7:25

practice of secure relating. That's

7:27

one option. And then the other option

7:29

is we have another professional who will be leading

7:32

a mindfulness practice at the same time. So

7:35

all kinds of goodies coming at you.

7:38

Those of you hearing the word strength

7:40

training, we're not going to be bringing

7:42

barbells or anything like that. It's going

7:44

to be something pretty accessible and accessible,

7:46

but meaningful, which is helpful to bring

7:48

that kind of thing to an everyday

7:50

life that's really doable and accessible to

7:52

everybody. And so for anybody from out of

7:54

town, we will have some welcoming and then

7:56

on Sunday, I think we've got some volunteers

7:58

that are going to be there. be continuing

8:00

to do cool things so that we want

8:02

to help you all meet each other and

8:04

again do what we say we want to do

8:07

which is build community. So if you

8:09

are a listener and you are coming in

8:11

from if you happen to be coming in

8:13

from out of town go ahead and shoot

8:15

an email to Catherine at therapistuncensored.com just

8:18

that we know that you're a listener and that you'll be coming

8:20

in from out of town. Actually what it's go ahead

8:22

and send it to info at. Okay that's a good idea.

8:26

And then the link should be live by the

8:28

time that this goes live. It should

8:31

be live. So we go

8:33

to therapistuncensored.com and it'll

8:35

probably be backslash conference but you'll

8:37

see it on our page therapistuncensored.com.

8:40

Remember it's not backslash we got corrected on that.

8:42

Maybe it'll be called modern

8:46

attachment or conference I don't know

8:48

but you'll see it on the page. Yeah

8:51

it'll be distinct. Yes. All

8:53

right and again thanks to us and in

8:55

connection for this wonderful opportunity. So

8:58

let's dive into today's episode. So

9:00

we have personally

9:02

close to us experienced

9:04

somebody that we love dearly

9:08

with long COVID and it's

9:10

very very relevant in our hearts and I

9:12

don't know anyone who

9:14

can take a

9:16

topic and dive more deeply

9:18

than you Sue Marriott. When

9:21

she gets her mind to something and

9:23

she cares about you and something's going

9:25

on you're gonna know more

9:27

about it than anybody else I think I

9:29

can imagine knowing. And we

9:32

decided that we wanted to bring this

9:34

topic to our listeners because it's

9:36

so relevant. Long COVID is

9:39

impacting they estimate about 10

9:41

to 30 percent of people who actually

9:43

contract COVID are likely to have

9:46

long COVID symptoms and

9:48

some people won't even know that's what it

9:50

is. So we really feel like it's a

9:52

very very relevant topic and how it affects

9:54

us emotionally and physically as

9:57

well as socially. So we want

9:59

to talk about it today. Yeah, totally.

10:01

And Anna's right, I deal with

10:03

stress by learning. So

10:06

I have read probably more than my fair share, but

10:08

certainly I'm no expert. And as

10:10

we're sharing some of this, you know, we're

10:12

not medical doctors, not neuroscientists, concerned

10:15

people and both

10:17

personally in our life and also professionally.

10:19

So this is in

10:21

stereo for sure. So I care about it

10:23

a lot. So long

10:25

COVID is affecting a lot of people. Let's start

10:27

by talking about what we mean when we're talking

10:29

about long COVID. You know, it can

10:31

manifest in all sorts of different ways, right?

10:33

It can manifest for some individuals with severe

10:36

respiratory issues, heart palpitations,

10:39

muscle pain and aches,

10:42

migraines, even

10:44

digestive issues and voice.

10:47

It can affect your voice and your

10:50

vocal cords strangely and ringing in your

10:52

ears. So

10:54

this is a quick aside, I promise I won't

10:56

derail this too much. But one of

10:58

the exciting things I thought, the light bulb moments

11:00

that I had and reading about some of this

11:03

was the implication potentially of

11:05

the vagus nerve. And

11:07

many of you neuro nerds out there are friends,

11:10

the vagus nerve. I've heard us

11:12

talk about it a lot. And you just know about it

11:14

because of your probably your somatic work and things like that.

11:17

But it is, you know, the wandering

11:19

nerve, the 10th cranial

11:22

nerve, I believe largest nerve in the body. But

11:24

what's important about it is that it innervates

11:26

everything from the brain goes all the way

11:29

over your face, your neck, your ears, your

11:31

throat, all your big organs

11:33

in your chest and your gut, and

11:36

so on. And it is a major highway

11:38

sending information back and forth from the body

11:41

to the brain. And

11:43

so if COVID ends up affecting

11:45

the vagus nerve, that's

11:48

why all these different systems

11:50

might be impacted. So

11:53

I think there's a lot of those kinds of like, you

11:55

know, they say that if this

11:57

was a murder scene, that there would be

11:59

lots of. clues. There's no shortage

12:01

of clues. But today, rather

12:03

than all of those subsystems and all

12:05

of those subcategories, what we're

12:08

particularly interested in and focusing on, because

12:10

of the psychological impact, is

12:12

the many millions of people that are

12:15

impacted by this post-exertion malaise,

12:18

P-E-M, as they describe it.

12:21

It's this very severe fatigue

12:23

that happens with long COVID.

12:25

Well, very significant fatigue that

12:27

happens with just the slightest

12:29

exertion. It doesn't take much

12:31

for many people to feel this like

12:33

deep sense of just the gas going

12:35

out of your tank. Or

12:38

gravity being turned up a hundred

12:40

times. Or people have described it

12:42

like jet lag. You know,

12:44

if you think about, like, if you don't have it and

12:46

you have jet lag and you remember how miserable that can

12:49

be, where you're falling asleep in the

12:51

middle of the day, you cannot keep your eyes open

12:53

for anything or that you're wide

12:55

awake in the middle of the night, like your system

12:57

is off. But normally,

12:59

you get restful sleep and you're

13:01

able to restore. And so another

13:03

symptom is non-restorative sleep. And

13:06

I can tell you as we've dove into this

13:09

and become more familiar with it, just

13:11

about every morning I'm waking up just being

13:13

grateful that my body knows how to go

13:15

to sleep, keeps me asleep, wakes me up

13:18

at the right time, and I feel refreshed.

13:21

And for folks that are

13:23

struggling with this post-exertion malaise

13:26

and this chronic fatigue, then

13:29

that's the Achilles. Because

13:31

there's without restorative sleep,

13:34

then you wake up just as

13:36

jet lagged, just as hungover, just

13:38

as mentally cluttered as you

13:41

were when you went to sleep, which

13:43

is terrible. Then that can be

13:45

so discouraging. That's one reason we want to talk

13:48

about it today, is to help develop

13:50

compassion and care, whether this is

13:52

you or somebody you love to

13:54

understand. And this is not

13:56

just new to COVID. Our understanding

13:59

and focus on this kind of

14:01

chronic fatigue has significantly gone up

14:04

as COVID has been so widespread, but there's

14:06

all sorts of different kind of chronic fatigue

14:08

syndromes out there that people

14:10

struggle with all the time.

14:13

Right. And it hasn't gotten any attention. Or

14:15

not enough, right. It has gotten very

14:17

little attention because it is very difficult

14:20

to treat. It's very difficult to diagnose.

14:23

And it's very easy to blow off and to

14:26

not believe because it's even the

14:28

term chronic fatigue is we just assume that

14:30

we know what that means that because we

14:32

all have felt fatigued, but

14:34

that this is something very different. As a matter of fact, there's

14:37

a movement to really focus

14:39

on calling it ME instead of

14:41

CFS. So ME is myalgic

14:45

encephalomyelitis. And

14:47

then the other version is

14:49

encephalopathy. But basically

14:52

what that means, myalgic meaning pain, and

14:54

then the other meaning inflammation of the

14:57

brain and spinal cord and possibly the

14:59

myelin. And that

15:01

evokes a very different feeling and reaction

15:03

than just chronic fatigue. So it's really

15:05

important. So you'll hear it referred to

15:08

as ME slash CFS.

15:11

So this is an empathy development

15:13

is that we want you to really focus on

15:15

the ME. You know, this

15:17

is really affecting so many organs in the

15:19

body. And as a matter of

15:21

fact, there's a new article that just came out.

15:24

You want to speak to that? Well, it was

15:26

on NPR and it is based on studies

15:28

done in South Africa and the

15:30

Netherlands that have been able to

15:33

point to some really specific

15:35

outcomes that happen for long, specifically

15:37

in these cases, the long COVID

15:40

patients. They compared long

15:43

COVID with patients that have

15:45

recovered fully from COVID

15:48

in significant exercise. They

15:50

gave them an exercise for like 15 minutes. Right.

15:53

So there's a plethora of biomarkers.

15:56

So in general, what happens

15:58

is everybody exercises. and then

16:00

you get everything from oxygen consumption. But

16:03

there even in this particular study, they

16:05

were doing muscle biopsies. So they could

16:07

look at the physical muscle tissue. And

16:11

there were many very significant findings of

16:13

it. But then they would compare

16:15

it and then they would exercise again. And

16:18

for the folks with long COVID that

16:20

had this fatigue, those

16:22

markers were all

16:24

over the place. It was

16:27

absolutely clear and obvious on

16:29

the second round. They had cell

16:31

death in the muscle tissues, atrophy,

16:34

and really could point to

16:37

reasons why these individuals had trouble

16:39

converting oxygen into their energy. They

16:42

even found tiny blood clots

16:44

that increased tiny blood clots in

16:46

the tissues, right? In the muscle

16:49

walls. That's the really scary

16:51

stuff is that, again,

16:53

this is all just forming, just coming out.

16:56

The scientists are working really hard to figure this

16:58

out. But if that is true,

17:00

that the blood clots weren't in the vascular

17:02

system, which is where you would expect it.

17:05

They were in the muscle itself. What

17:08

that means is that

17:10

those clots somehow are

17:12

getting from inside the little tube

17:15

of the veins and the arteries. It's

17:18

moving through the wall into the muscle, which

17:20

is really scary because if it can do it

17:22

in the muscle, they're speculating that it can do

17:24

it in other tissues in the body too. So

17:28

this is alarming, but it's also

17:31

potentially gives researchers a direction to

17:33

go in. All of this

17:35

to say, one, that it's

17:37

hitting the public press in a much

17:39

larger way, the reality,

17:41

the biomarkers of this being

17:44

a very real chronic

17:46

illness to be taken very

17:48

seriously, both from work standpoint,

17:51

health standpoint, all those things,

17:53

research standpoint. But

17:55

we shouldn't need that. We should be

17:57

just believing people when they say that.

17:59

they're sick. And that is an important

18:02

message from the community, which is, yes,

18:04

we're, you know, those markers and research

18:06

is great. But also, we

18:09

don't want to be propagating the idea that until

18:11

you have a fever that you're sick, or until

18:13

that you can show it on a blood test,

18:15

that it's not real, that that isn't true, that

18:17

we want to listen to our bodies and

18:19

listen to the person who's telling us about their body.

18:22

That's very important message today. Very,

18:25

very important message. And we will link

18:27

some of these resources to the show notes.

18:30

So don't take our scientific description of what's

18:32

going on for any stress. That is not

18:34

our expertise. But what we do

18:36

want to do is to talk about

18:38

the stigma and the emotional pain that

18:40

happens with these kind of diseases, whether

18:43

it's long COVID or whether it is CFS

18:46

or- M-A-C-F-S, fibromyalgia,

18:49

lupus, Lyme disease.

18:52

There is so much stigma that happens

18:54

related to this that can be just heartbreaking.

18:57

And it's so much in

18:59

our culture, if you can't point to it and see

19:01

it, and you can't fix it, you know, then there's

19:04

like, come on, get up. And that used to be

19:06

the theory around this. They were like, oh, with long

19:08

COVID, the advice was, you know, you're

19:10

just been tired, you need to work yourself back

19:13

up, build up your stamina. And they

19:15

have actually discovered that is quite the

19:17

opposite. And this research really shows them a

19:19

little bit about why that kind

19:21

of exertion is actually leading to a rebound

19:23

and actually a decline in functioning, not an

19:25

improvement. Yeah, it's a huge

19:28

controversy. But actually, it's a really important

19:30

point, Anne, because it mirrors what happens

19:32

to us psychologically, when we

19:34

don't believe. And we're in that boat. And

19:36

as a matter of fact, if you're struggling

19:39

with something like this, you often also

19:41

probably don't believe. Like

19:43

we have a human tendency to

19:46

question ourselves. Like, you

19:48

know, when we call in sick, for example, at work, there's

19:50

a part of us that's like, well, you know, I'm not

19:52

so sick, I could go to work. Yeah, how thick am

19:54

I? I have enough energy to go and get up and

19:56

watch my favorite show. Could I sit in

19:58

that meeting? Exactly. Or Or like you think about the day

20:01

and you're like, you know, you might say, you're

20:03

like, I don't feel that great. And then you think about what's going

20:05

to happen. And then based on what you think about what's going to,

20:07

you know, like, oh, no, then you get up and you go. Or

20:10

you're like, oh, never mind. I'm rolling over and going. So

20:12

that self-doubt is in all of

20:14

us in the medical community,

20:16

this argument, one

20:18

of the positions, and this is what the great, this

20:21

is what you were talking about with a graded exercise,

20:23

which is that the old theory was, well,

20:26

yeah, you got sick. And so then you

20:28

got deconditioned because you weren't moving, you were

20:30

in bed. And then because

20:33

you're deconditioned, that when you get up, you're tired.

20:35

And so then you want to go back to

20:37

bed, but then you get depressed, which then makes you

20:40

want to like, in other words, that you're in the

20:42

cycle that is, you know,

20:44

quote, in your head, meaning, if

20:47

we could push you enough and get you moving and

20:49

get you conditioned again, then you're going to

20:51

feel better. And in many, many cases, that's

20:54

actually true. If your body's

20:56

functioning normally and it's oxygen delivery

20:58

and it's recovery, absolutely, get

21:00

moving, push yourself a little bit, no pain,

21:02

no gain, all of that makes sense. But

21:05

what they're discovering in this case is the exact

21:07

opposite, which is that to push someone, as a

21:10

matter of fact, those studies you just mentioned, those

21:13

poor, long COVID folks that had

21:15

the symptoms that were pushed to

21:18

measure, they had the negative impact

21:20

and the backlash, like it's actually

21:22

harmful to push past these things.

21:25

But my point psychologically, though, is that

21:27

there's a group of scientists that are

21:29

really standing firm and know this is

21:31

about deconditioning, you just have to condition.

21:35

And then there's these other group of people saying

21:37

that, no, you have to believe them. And they're

21:39

pointing now to these biological markers in order to

21:41

convince them. So it's like they're having to use

21:44

a left brain argument to say, here,

21:46

let me prove it to you that

21:48

we need to listen to these patients. And

21:51

it just mirrors, I think, some of what goes

21:53

on within us psychologically of like, when

21:56

your neighbor gets robbed or when something bad happens

21:58

to someone close to you, typically, very

22:00

natural human reaction is to think something

22:03

very quiet and privately like, well

22:05

they didn't have a security system or

22:08

kept their windows open a lot. Which

22:10

is, has this also this embedded, if

22:13

they'd have done something different, if they would, they should

22:15

have known better. Well no, but the idea is it's

22:17

not so much like blaming, but

22:19

it's more of distancing. Like if I could

22:21

do this, then that won't

22:23

happen to me. It's an unconscious psychological

22:26

defense to distance us from

22:28

this helpless tragic event.

22:31

They weren't wearing a seat belt or whatever it

22:33

is, right? That we have naturally a way when

22:35

pain happens to kind of tell

22:37

a little narrative of how that there's some attribute

22:39

control to it. Like that that

22:41

can't happen to me. And so that happens when

22:44

it comes to chronic illness. Because

22:46

the first thing that happens when somebody says,

22:48

you know, we say we have a family

22:50

member with long COVID, there

22:53

are a hundred thousand solutions given to us. And

22:55

it's with all in love and all in good

22:57

intention. And I've done it too. So this isn't,

22:59

we're more talking about the psychological impulse

23:02

to know what's going on, to understand,

23:04

and then to want to help. And

23:06

like here, this is the solution. Which

23:09

is wonderful and beautiful. And again, we've, it's all

23:11

makes sense. But we're trying to look at the

23:13

more subtle underlying thing. Which is,

23:15

oh this is something I know

23:18

and understand. If you did this thing, you

23:20

would feel better. What we're saying, that's more

23:22

about our need to

23:24

feel some sense of

23:26

psychological control. Then like

23:28

it's much more difficult to

23:30

stay in the absolute helplessness

23:33

and unknowing of

23:35

this kind of strange

23:37

multi-system disease. That who

23:40

knows why one person gets it and one person

23:42

doesn't. It's a more subtle

23:44

point that we're trying to make here on the

23:46

podcast today. Around being a little

23:49

bit more conscious of

23:52

our impulse to think we want to give

23:54

answers. And instead invite you into this

23:56

much more vulnerable place of not

23:59

knowing. and listening and

24:02

hearing and asking more

24:04

questions and being with someone you

24:07

know rather than trying to get it fixed right away. And

24:11

what you're hearing with that amazing

24:13

input is what we talk about

24:15

in general right how hard it

24:17

is to stay connected to people

24:20

just where they are at and

24:22

being aware of what gets stirred in

24:24

our own body our assertion to need to be

24:26

helpful to be caring to not be helpless and

24:28

how much we project into other

24:31

people what's going on inside us

24:33

and miss the connection with

24:35

the person themselves because of

24:37

what's going on the loud the held

24:40

voices inside our body or our

24:42

head and the noise that we ignore to

24:45

try to be helpful and encouraging

24:47

or to judge and think this person is just

24:49

like if they would try a little harder they

24:51

could get out of bed or you know they're

24:53

just playing this off you know so

24:56

this is something you can relate to

24:58

experiencing post-covid and you

25:00

hadn't maybe attributed to the fact that you may have

25:03

literally physiological inflammation and

25:05

again we are not trying

25:07

to say we know the causes of

25:09

this this is not our expertise so

25:11

this is the research we're reading but

25:14

really consider the fact that what

25:17

may be happening to your body is real and

25:20

if you think about it to those

25:22

of you that have this that's not you

25:24

but somebody in your life and

25:26

they've had good days you get hopeful oh

25:28

good we're on the other side of this

25:31

and then they have you know one of the days

25:33

you're speaking about to kind

25:35

of pay attention to how it feels emotionally

25:37

to you because you may be putting unconscious

25:39

pressure on this person to wait you

25:41

were better what happened what happened let's let's track it down

25:43

because we got to fix that and that

25:45

puts a lot of pressure on both

25:48

of you to think that there's a specific answer out

25:50

there that needs to be solved and the effect of

25:52

that can be quite detrimental

26:05

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code t you. promo code TU. Alright let's jump back

29:13

into the episode. It's

29:16

been interesting too because physicians are

29:18

people too and we

29:20

don't like to not understand something and

29:23

it's a challenge to join someone

29:26

in helplessness when your

29:28

whole career, your whole life is built

29:30

on helping people. So

29:32

that gets really tricky and as

29:34

a matter of fact we and some of the

29:36

treatment that I've seen and with the we have

29:38

a local long Covid Center here in Austin Texas.

29:40

It takes forever to get into

29:43

it but even once you get

29:45

into it the physicians will tell you that

29:47

they used to follow patients more closely but

29:49

it was too hard on the physicians and

29:52

the patients to have visits

29:54

too close together and not

29:56

be able to see change yet. So

29:58

they put the sessions far

30:00

apart partly to take care of the

30:02

physician and the nurses and the like

30:04

it that it's very Disheartening when you

30:06

pour everything into it and you try

30:08

but the changes that we see in

30:10

this ME CFS Or the

30:13

post COVID that looks like that are very

30:15

very slow. You know, there's hope for sure

30:17

Yeah, there is improvement over time, right? But

30:19

but more that I think the point I'm

30:21

making is what kind of what you're saying,

30:23

which is that it's very hard to To

30:26

just sit with the passivity and

30:28

the helplessness we really want to know

30:30

and we really want to help and That

30:33

definitely affects the medical care and it affects

30:35

how these patients are treated and

30:37

hopefully in hearing this podcast we

30:40

can widen your window of both

30:42

believing the person and Having

30:45

compassion and like being able to put yourself in

30:47

their shoes when I think about honestly It was

30:50

saying the other day like I

30:52

fall asleep pretty easy and I sleep all night

30:54

and I wake up feeling pretty good I need

30:56

that every morning that I wake up be grateful

30:59

That all the magic that happens

31:01

when your rhythms the kitty and rhythm and

31:03

all those things are working

31:06

And that might not always be the case You

31:09

know what I'm saying? I do I do

31:11

like that's how I have developed deeper like even

31:13

the example I talked about I think about the

31:15

gentleman that I spoke with and I think about

31:17

in my own personal experience I feel very grateful

31:19

for the amount of energy that I just hold

31:22

I guess you and I actually hold a lot

31:24

of just natural energy and I

31:27

feel so much more exponentially grateful that I

31:29

have that and I think

31:31

about the times of the days and I

31:33

think everybody can relate to that where you've

31:36

so fatigued for whatever reason you didn't Sleep

31:38

or jet lag and I could

31:40

think I can't wait to go to bed I can't wait

31:42

to sleep because I know what it's like Post

31:45

this to wake up and feel good

31:47

and that generally is what happens for me, right?

31:49

And so if I stop to really put myself

31:52

in the place of people experiencing this and they

31:54

don't get to wake up They don't

31:57

get to look forward actually to going to

31:59

bed wake up and

32:01

to feel refreshed and that they are likely

32:03

going to feel this. Some people for a

32:05

couple months, some people for six

32:08

months, some 12, some 18 months, some

32:10

longer, that that kind

32:12

of fatigue and if you stop

32:15

to really put yourself in

32:17

that place, it can help

32:19

you really connect and feel empathy and not do

32:21

well. You know, have you tried this? You

32:23

know, think about that. Think about our tendency,

32:25

we spoke about that earlier, to try to

32:27

be helpful and to show our care through

32:30

giving advice or, my friend had

32:32

this and tried this and when you

32:34

have that kind of fatigue and everybody that comes close to

32:36

you has this solution, it kind

32:38

of implies if you would be doing something different,

32:40

like you were mentioning earlier, if you would just do

32:43

something different, you wouldn't have this and

32:45

we don't mean to imply that but

32:47

that's what we do and to slow

32:49

down and go, oh that's not the

32:51

case. This is real, this is a

32:53

post-infection and brain inflammation and brain

32:55

inflammation in your body and

32:57

to show, wow, that is hard and what

33:00

we talk about in our podcast about all

33:02

sorts of other ways of connecting

33:04

to the people we care about, we want

33:06

to really promote that here, that secure relating

33:08

to people going through this is

33:10

really allowing yourself to imagine the experience

33:12

for you and to connect in

33:15

what their experience is because it's different

33:17

for everyone. We're talking about one particular

33:19

manifestation but there is a lot of

33:21

different manifestations of this so the core

33:23

goal here is to listen and trust

33:25

and believe somebody rather than to

33:27

project ourselves into it and

33:30

then start going by own experience

33:32

which impairs our ability to go, how

33:34

is it for you and

33:36

what is it that you need and really

33:38

listening and I think we also have to

33:40

touch base with a lot of our Western

33:43

culture judgment and stigma on

33:45

people that are slower whose

33:47

physical manifestation is to slow down and

33:49

our stigma of that and our pressure

33:51

to get moving and

33:55

the fact that we can't point to particular things

33:57

makes it really hard for those in the workforce.

34:00

when you have a particular event and you're

34:02

out for a week, your boss expects you

34:05

to be back and be back to normal.

34:08

And when you have this kind of disability and

34:10

people don't understand it, it's an excuse to have

34:12

judgment and push people out and

34:14

not have care or provide the kind

34:17

of support that people need to keep

34:19

their jobs when they're experiencing this. Absolutely.

34:22

And you know there's a large

34:24

ME community. One of the things that

34:26

has been helpful for the some of

34:28

folks that I'm aware

34:30

of that are struggling with this are

34:32

these peer groups. There's

34:34

Facebook groups. There's ways to connect. I

34:36

liked what you said though about listening

34:39

to the patient. I'm

34:41

calling it patient, family member or listening

34:44

to the person struggling with this. Yes.

34:46

Listening to the person struggling with this.

34:48

Thank you. That's that feels a lot

34:50

better actually. And asking them

34:52

what would support look like for you and let

34:55

them guide you. And again,

34:58

yeah to believe them. And to

35:00

ask them you know I think about it. It's hard for

35:02

me you know if I've had something go on and somebody else

35:04

has a similar thing. I can remember when I was running and

35:06

I had an injury and then I was able to get better

35:08

through this one way and every time somebody had it. Oh let

35:11

me tell you right. Let me tell you about this

35:13

great thing that I went through. It's

35:15

tempting because we care. But to go I

35:17

have had some experience. Are you interested? Do

35:19

you have any energy to hear? Because just

35:21

my experience and to be open and say

35:23

no thank you but thanks for sharing but

35:26

no. And go I got it.

35:28

Right. Rather than pushing forward and giving the advice

35:30

without it being solicited or welcomed. Totally.

35:33

And as a matter of fact probably the way

35:35

another way to be supportive would

35:37

be to know that the person

35:39

who is struggling with it also

35:42

sometimes doesn't believe themselves. Mm-hmm.

35:45

Right. Like if you think about when you call in

35:47

sick or something I keep saying that. But yeah you

35:49

probably could have gotten up and gone to work. And

35:51

there's a part that says tracking like you know I

35:54

could have gone. You know I feel like I'm a

35:56

little bit leaning into the sickness. Well even like I

35:58

always like to have a fever. I'm

36:00

sick because I can prove that like okay. I have a

36:02

fever so now I can rest That

36:04

is so true that it really particular to

36:06

you have a really hard time trusting that

36:08

you're sick and leaning into it Without

36:11

this feeling of yeah, right that

36:13

I'm making it up or yeah. Yeah, that's

36:15

directly related to my history But

36:17

it's true and I think that other people

36:19

experience the same thing of like knowing that

36:21

on one level Maybe I could do the

36:24

thing So the people that

36:26

are struggling with this they have that too So

36:28

you being able to support them in believing

36:31

themselves and in listening to their body and

36:33

maybe helping them track Because

36:35

tracking is a big part of it But

36:37

that would be a way to be supportive of

36:39

like really helping them come to

36:41

accept one of the treatments that they used

36:43

to recommend I mean

36:46

by used to I mean recently This is

36:48

still a little bit controversial Like I said,

36:50

it was that graded exercise that now they

36:52

are not recommending for people even long covid

36:54

with post exertional Malays it

36:57

can be counter indicated right

36:59

to push yourself meaning push yourself, right

37:01

that this is not a good idea when you have

37:03

it It can make you worse but

37:06

also there was a CBT therapy that they

37:08

were really pushing and saying that there was

37:10

evidence for that again the

37:12

Controversy is that that was not good science

37:16

You can certainly look into that yourself, but I

37:18

think where people are settling is The

37:21

CBT that they're talking about CBT

37:23

meaning cognitive behavioral therapy was

37:25

helping convince them that it was in

37:27

their head Right

37:29

helping them push past

37:32

their own internal barriers That also

37:34

is counter indicated because in fact

37:36

that's not the case now

37:39

CBT therapy that helps someone accept

37:41

what's happening and understand it and

37:44

Get more in touch with their body and

37:46

listen that's different and that's certainly welcome When

37:49

you hear people push back about CBT therapy

37:51

for this It's the kind of therapy where basically the

37:54

therapist is really trying to convince you that it's

37:56

in your head. It's terrible Right,

37:58

and if you just push yourself and don't give in.

38:01

There's this whole thing of don't give in,

38:03

right? And if you don't give in and

38:05

you push yourself, but I really

38:08

taking time to educate myself, which is a

38:12

fourth or a half as much as you've educated

38:14

yourself, but a lot more than I was educated

38:16

a year ago when I was having my biases,

38:19

is to really understand that that kind of

38:21

push past the pain is actually

38:24

so productive to this and

38:27

could create a lot more rebound

38:29

and detrimental long-term effects. So

38:31

doing the kind of CBT to say what is

38:33

it like for you to really listen to your body

38:35

and to trust it and

38:37

to communicate with it and that that in and

38:39

of itself and think how much of us in general could

38:41

learn that to quit getting out of that push

38:43

past the pain thing that we

38:45

promote in our culture in general

38:48

to really listen to yourself and then this fear that if

38:50

you listen to yourself you're going to cause some kind

38:52

of weakness in you and how

38:55

much that is not actually true. Absolutely,

38:58

and I love what you were just saying. This

39:00

is actually a really important thing that I've learned,

39:02

which is you know, we were

39:04

just kind of working on developing our empathy

39:06

and putting ourselves in the shoes of not

39:08

being able to get restorative rest. You

39:12

know, then you feel all this like oh that

39:14

feels terrible, which can cause us to sort of

39:16

pity or feel

39:19

like less than and here's

39:22

the thing in the world

39:24

of disability, one of

39:26

the ways again, I can't represent this

39:28

but I am learning about it that

39:31

they really talk about is a lot of

39:33

these folks have been movers and shakers and

39:35

runners and goers and their

39:38

stories of I had

39:40

to slow down and I had to listen to

39:42

myself and I began to look around and see

39:44

all these crazy people running around and not

39:47

knowing that they're not in touch with their bodies, not

39:49

knowing what they're missing by

39:52

being still and slow. So

39:54

this kind of

39:57

it's a different ability that you tap into

39:59

with this. slowness, for

40:01

example, maybe more spirituality,

40:04

maybe grappling with who am

40:06

I if I can't produce? Those

40:09

kinds of big, deeper questions

40:11

that wouldn't be gotten

40:14

to and explored without this. So I'm

40:16

not saying that it's a good thing,

40:18

it's not something somebody would choose, but

40:20

it's more about like don't assume that

40:22

you know what it's like for that

40:24

person and maybe some of the things

40:26

that they are gaining from it and

40:29

that helps us kind of be humble around like

40:31

well that could be us tomorrow, you know. We

40:33

get restored to sleep today but who knows

40:35

what's gonna happen in our future of abilities that

40:37

we have now that we won't have then. It'll

40:40

happen even just with aging. And

40:43

when you said earlier it probably

40:46

isn't something we wouldn't choose, that actually isn't always the case.

40:48

I think about how I could

40:50

relate to that is everything that so many people

40:52

went through just with COVID and isolation

40:54

and the pulling out of our everyday pace,

40:58

there was a loss in that for many

41:01

of us. But then there was

41:03

a huge gain in that we

41:05

questioned the kind of pace

41:07

that we kept in the world and

41:10

a lot of outgoing effect of that where

41:12

people did change their lives. I think to

41:14

your point when people have

41:16

had to go through all sorts of if

41:18

they've lost their sight, their hearing or

41:20

this kind of energy level that

41:23

gains such insight that we don't have. They have

41:25

all sorts of wisdom. So I think your point

41:27

I love that about instead of

41:29

having a pity, oh I'm sorry for you let's get

41:31

you back to where you were before. It's wait let's listen

41:33

to where you are now. Connect to

41:35

that and learn from it. What's it like? We

41:37

could all learn to get out of this chronic

41:40

pace of feeling guilty if we slow down which

41:42

is part of the effect of this. They have

41:44

to slow down. They don't have a choice removing

41:46

the guilt and also like wow what are

41:48

you getting from that and us learning from

41:51

that instead of assuming that we're over here

41:53

where we should be and we have to

41:55

get them back there. It's oh wow having

41:57

to really slow down welcomes all sorts of

41:59

different parts of of seeing the world that

42:01

we wouldn't otherwise have. Totally. It makes me

42:03

think of altered states or even like psychedelics.

42:05

Like you get in touch with something that

42:08

is right there. Mm-hmm. But

42:10

in a different state of mind, you

42:13

know, it looks and feels different and

42:15

we gain access. So one of

42:17

the books I've been reading lately, Brilliant Imperfection,

42:20

Grappling with Cure by Eli

42:22

Clare. What you said was

42:24

kind of getting them back to how they used

42:27

to be. And I love that

42:29

you said that because the notion here

42:31

is just what you were talking about,

42:33

like coming to accept something you might not have chosen,

42:36

coming to accept that and then finding peace

42:39

and being where you are and

42:41

the advantages and then being

42:43

open to what's going to happen in the future. It's

42:45

not necessarily about getting back to where you were. It's

42:48

about growing from where you are today. And

42:51

I think that that's actually really beautiful.

42:54

And so the disability justice folks talk

42:56

a lot about kind of the

42:58

medical industrial complex and creating

43:01

cure and like too much of a focus

43:03

on cure. And I have found that

43:06

useful. And I think a

43:08

lot of people with new chronic

43:10

illnesses are going to have to go through their own

43:12

process of like, how do I adjust to this? And

43:15

I'm saying chronic. I'm afraid people are like, oh, no,

43:17

am I going to have this forever? Right,

43:19

right. We don't want to imply that. But it definitely is

43:21

not a quick one. And

43:23

some of the stuff they do know about

43:26

ME CFS is that it can be years.

43:29

This is different necessarily from long covid

43:31

with post-exertional malaise. Is that the same

43:33

thing? Hard to tell. But

43:36

with the ME and the ME

43:38

community, it can last for many, many

43:40

years. And this is

43:42

part of why it matters and it's affecting

43:44

people. And we really want you to get

43:46

the attention that you deserve and you to

43:49

get funding for the research that needs to

43:51

happen on this. And for you to be

43:53

taken seriously by your medical doctors. That's

43:56

our message. And for you to

43:58

take yourself seriously to insist on being taken seriously. yourself.

44:00

That's right. I think that's slow

44:05

down for all of us and to kind of

44:08

go, oh what is it that we in this

44:10

experience as we accept it and

44:12

we also work on being

44:15

our best selves with it. Part of that is just

44:17

like, oh what are the opportunities that

44:19

are being offered and

44:21

not just seeing everything through the cure model.

44:24

Like what is here for me right now

44:26

as I experience what am I experiencing and

44:29

we all need to learn from that no matter

44:31

what we're experiencing in our world to be

44:33

able to slow down and go we

44:35

are here right now in this moment.

44:38

Whether it's what we're experiencing or

44:40

somebody we love and learning to

44:43

do that just really exponentially adds

44:45

to connection and care. Secure relating.

44:47

Yeah it's like being with somebody

44:49

rather than that tempting to, oh let me tell

44:51

you about the doctor that I have. We're missing

44:53

the moment of just being there with that person

44:56

which is we know also is the most healing

44:58

for us together. Right

45:00

and when you're the person

45:02

that's down and you can feel somebody wanting to

45:04

help so much, at least I think for many

45:06

of us have been socialized to be caretakers, then

45:09

we start taking care of them. Right? Like

45:11

oh no I'm fine and oh I'm much

45:13

better today than I was yesterday. Right?

45:15

Then now not only am I sick but the

45:17

person who's trying to take care of me I'm

45:19

taking care of. Right I'm having to

45:22

like assure them rather than just be with them. But

45:24

don't put that labor on these folks. That's really

45:26

really a good point. By the way I know

45:28

we're covering a lot but in our show notes

45:30

for today's episode we'll put a lot of the

45:32

resources and references

45:34

including some support groups and

45:37

things like that for you to be able to

45:39

access. And if you appreciate this content

45:41

please jump on wherever you're getting your podcast and

45:43

leave us a rating and review so other people

45:46

can find us. Thanks

45:48

for listening and we'll see you around the place. Their

45:56

best uncensored is Ann Kelly and Sue

45:59

Marriott. This podcast... is edited by

46:01

Jack Anderson.