We are very pleased to announce the first episode of the EDS Unplugged podcast, brought to you by Chronic Pain Partners.

In this episode, Cassandra and Marcia speak with Kate Schultz about what we do here at Chronic Pain Partners and living with EDS in the run up to Invisible Disabilities Week.

Listen to Episode 1 here: 

Transcript: 

You’re listening to the EDS Unplugged podcast, brought to you by Chronic Pain Partners, a non-profit supporting the Ehlers-Danlos Syndrome community. (Quiet music in the background)

 

We’re joined today by Kate Schultz, part of the media team at Chronic Pain Partners.

Kate not only contributes her skills to their advocacy, but also lives with chronic illness 

herself.

 

Welcome, Kate. How are you doing today?

I’m doing all right.

How are you all doing today?

Not too bad.

It’s an EDS day for me.

It’s a bit of a brain foggy kind of day.

I’m sure our audience will understand that as we move along.

Absolutely.

 

Before we dive into the theme of invisible disabilities, let’s start by getting to know a 

little bit about you.

Okay.

Again, my name is Kate Schultz.

I live in Madison, Wisconsin in the United States.

And I was one of the very lucky people that got diagnosed with Ehlers-Danlos when I was 

seven years old. Dating myself, was back in 1990. So there was no genetic testing.

It was done by skin biopsy and clinical observation.

So I’ve kind of grown up with Ehlers-Danlos. And as more information has been learned 

about Ehlers-Danlos, kind of learning about it as the medical world did.

I have Classical Ehlers-Danlos, so I’m a little of a special snowflake type.

So it’s been interesting to meet so many different people who all have Hypermobile 

Ehlers-Danlos and see kind of how their symptoms all align with each other.

And then I’m kind of over here going like, okay, that’s interesting. I experienced this.

I’ve had a number of torn or ruptured tendons and skin issues, but my dislocations, I can 

count on one hand.

My joints are loose, but they don’t dislocate the same way that I think some people with 

Hypermobile Ehlers-Danlos have issues with.

 

So it’s been an interesting ride as I’ve aged and learned more about this condition in all of the different ways that it affects the body and how little is still known about it.

I’ve always been very open about my illness and what it does to me and how it affects me.

So I took that. And wanted to do it on a broader scale.

And fortunately, Chronic Pain Partners and I kind of found each other at the same time 

and it ended up being a great match for me to be able to write for them and share some 

of the stuff that I’ve learned and get a chance to learn a lot more about this condition and 

share that.

 

I always feel that like, if I can share something I’ve gone through or something that I know, 

or a process for doing something, and someone else doesn’t have to figure that out on their 

own, I’m happy to help those who come after me.

 

You know, if I can teach a doctor that like, this is what Ehlers-Danlos looks like and 

therefore more people are going to get a diagnosis sooner, great, I’m in for it.

It’s also the reason why I work as a standardised patient, which is kind of a medical actor 

for medical schools.

I live near the University of Wisconsin, and I go in and portray a patient, not necessarily with Ehlers- Danlos, but with a specific illness or a set of symptoms, and the medical students 

get to practice their interviewing skills, sometimes their examination skills.

So it’s really heartening to see how medical students are being trained and I’m like, okay, 

these are my future doctors and I get a chance to give them a little bit of help and information about how to act with patients and treat them.

 

So that’s a little bit about me.

Yeah, and I’m excited to talk about invisible disability with y’all.

Okay, lovely.

 

Could you share a little bit about Chronic Pain Partners and the role within the 

organisation?

Sure. Chronic Pain Partners is a non-profit that was started by John Furman a 

number of years ago as his kind of passion project.

John has Ehlers-Danlos, I believe his late wife did, and I believe his daughter does as well.

So he poured in time, money, effort, heart, blood, sweat, tears, I’m sure, into this beautiful 

website that has several other websites underneath it.

So if you go to chronicpainpartners.com, you’ll notice that it says EDS Awareness at the top.

And then there are some other websites under the umbrella for provider training, nurse 

training, and a couple of other things.

 

It’s unfortunately shrunk in the last couple of years, due to some personal issues on John’s 

end with his health.

So our editor, Karina, has bravely pushed forward and helped kept the organisation going 

with the newsletters that we publish.

And that’s mostly where I spend my time is helping write the newsletters, research the topics, organise that area of the world.

We have another writer who just joined us. We have our wonderful podcasters with us now.

And we also have a great social media manager.

 

If anybody listening wants to volunteer with us, we are happy to hear from you and just tell 

us what skills you have and we’d love to find a place for you on our team.

Okay, fantastic. Thank you for sharing that information.

 

Now, for some who may not know, living with EDS can cause disability.

Not for everybody. There’s some people that live with EDS that it doesn’t impact them in the 

same way, and it impacts us all differently. And often these disabilities are invisible. So other people can’t see what we may be going through on a daily basis.

It can change from hour to hour, day to day in regards to what it actually visually looks like, let alone what it feels like.

I just want you to explain that a little bit for people who may not understand what 

invisible disability actually means.

Invisible Disability week is happening on the 19th of October, so this is all a very timely

and a fantastic time to have you here with us, Kate.

Great.

I love advocacy weeks.

I love pointing out, celebrating them, making sure people know about them.

 

Why do weeks like Invisible Disabilities week matter to you?

To me personally, it is exactly the reason that you explained. It’s that Ehlers-Danlos 

specifically, but also a number of other conditions, are invisible.

You can’t tell somebody has it by walking down the street.

And as we’re learning in a variety of different ways in the medical community and outside, 

you can’t tell somebody’s health by looking at them.

You can’t tell what kind of pain they’re going through by looking at them.

You don’t know how many times they’ve had surgery or how many times they dislocated a 

joint since this morning.

So it really touches into something that I feel very passionate about, which is just a sense of 

empathy for those around us.

We are all human beings. We are all struggling with something.

A lot of us with illness, but for some people it could be… mental illness as opposed to a 

physical illness.

It could be, you know, family stress, work stress.

You know, we’ve all had those days where we’re just hanging on by a thread and the one last 

little thing can just push us over the edge.

You know, when somebody is struggling, whether that’s mood-wise, behaviour-wise, 

I love weeks like this that make us take a chance to say, “you know what, I don’t know what’sgoing on with that person, so I’m going to approach them openly and with the best of 

intentions”, because I think we’re all going through a lot more than any one person looking 

at us can tell, even those closest to us.

Absolutely.

And I think raising more awareness, hopefully people will take more of that on board.

Definitely.

In the week they have a theme and it’s myth busting.

My question to you is, which is one misconception you would like to set straight?

Oh, that’s a really good question.

I think for me, because I have a lot of mobility challenges, is that just because I look like I 

can walk okay, doesn’t mean I can walk okay.

So for example, I have a handicap placard for my car, and I use it because I need it.

And oftentimes I’m okay when I walk into a store, but the act of walking through the store 

and doing whatever I need to do inside the establishment makes it super difficult to get back 

to my car.

And I see you both nodding like, yes, this is very common.

Commenting on a social media platform the other day, people were getting upset about how 

shoppers weren’t putting their carts back in the cart corral, which I understand is not 

necessarily as much of a problem in the European countries as it is in America, but I had to 

chime in and be like, you know, I know this isn’t the majority of people, but sometimes 

people who have a hard time walking or who maybe have kids with them or whatever.

Really have to go to the bathroom, I don’t know. Just can’t get the cart back.

And again, it goes back to that piece of empathy.

Like, if I have a handicap placard, assume that I need it.

Until you see me breakdancing, and even then, you know, maybe I can breakdance and then Ineed to get back to my car and I can’t walk that far.

You know, people with heart conditions, people with breathing conditions, all those kinds of people who look like they’re just fine need accommodations in a variety of ways.

Including parking.

So making an assumption that people are, you know, faking it, using someone else’s, oh, they must have taken that from their grandmother or grandfather because they look young.

All of that kind of preconceived notion about what somebody who has chronic illness or a 

disability looks like can just make doing simple things like going to the grocery store really 

uncomfortable.

Yeah, absolutely.

We covered that in our book, didn’t we Marcia?

Yeah.

Yeah. Talking about the experience of doing things like shopping.

Yes.

And what that could be like for us.

Find that it doesn’t happen as often, but there used to be pushed back by just parking in the disabled bay.

Yeah.

And some people will see you walking in, not knowing how much pain you’re in, what 

you had to place back into the joint because it’s dislocated or subluxed.

And yeah, I’ve had a few people in the store actually approached me historically.

Oh, why have you parked there? Because I’m entitled to.

Yeah.

You know, I definitely can relate to walking in, feeling one way and walking out, feeling 

another way, as you said as well.

Yeah.

Yeah. Absolutely.

I don’t know if you have something over there. We have something here called the

Sunflower Lanyard.

No, I’m not familiar.

Okay, so this is a green lanyard with…sunflowers.

Sunflowers on it.

I was going to say daffodils.

Where did that come from?

With sunflowers on it that basically symbolises that person has an invisible disability.

That’s great.

Now, not everybody in the general public actually knows what it means.

There have been campaigns by some supermarkets over the years. Most stores had to teach their staff. All kind of stores, banks, supermarkets.

They know as soon as you walk in, so you may get that extra help at the till.

You definitely get help at the airport.

Yeah.

And it’s run by the Hidden Disabilities organisation.

I think that’s what they’re called.

Yeah.

Well, I only knew about it a few years ago, but it definitely makes a difference.

I mean, if I’d have had it when I was younger, it would have made a massive difference to mylife and not feeling like I have to hide it or fake it or explain stuff and things like that.

So it’s something that we’re both really grateful for here in this country.

And it would be good if it was something that was global, actually.

Yeah.

I’ve travelled with it. I’ve travelled to Morocco. Airports know instantly.

I’ve travelled to places in Europe and they know instantly from seeing it. 

They will fast track you just from seeing that you’re wearing it.

But those are particularly trained organisations.

It would be good for organisations globally, but also for the general public 

to understand.

Yeah, I don’t think the general public even here know what it means.

Yeah, it’s organisations basically, where they have to train their staff from a 

legal perspective.

But yeah, we found that really helpful.

Do you have anything like that over there?

Not that I’m aware of.

Obviously, if somebody does know of something like that, please contact us because we 

would love to promote that and get that word out to more people.

One other thing that I was thinking about in terms of, again, my mobility issues is that I wear knee braces and sometimes they’re bigger and sometimes they’re smaller, but oftentimes they are hidden under my clothes.

So if I don’t happen to be using crutches or a walker or my wheelchair that day and, you 

know, I have baggy pants on or a skirt, again, people might look at me and be like, well, 

she looks like she’s walking fine. I now have a pretty substantial limp.

So most people see that and go, ah, yes, I can see that she is troubled.

That was always been an issue.

And then kind of on the flip side, you guys were talking about being asked like, well, what’s wrong with you?

I noticed when I go to the gym, I get asked that a lot.

They see me with crutches or taking my braces off and they’re like, “oh, what happened to 

you?”.

And I’m just like, life happened to me, life with Ehlers-Danlos Syndrome.

And they just want a cute little like, “oh, well, I fell down while I was skiing and, you know, I’ll, I’ll be better”.

So it’s kind of the opposite of invisible disability.

I mean, it relates because they want to know, they want the explanation, but it’s a little bit 

like, I don’t need to tell you my medical records.

Yeah, there’s been times for me, especially in the past, not so much now since we went 

public with EDS Unplugged. But I used to be very much like,  I can’t be bothered 

to explain.

I mean, it took 20 years to get diagnosed anyway., so initially I couldn’t actually 

explain what was wrong.

And even after being diagnosed, sometimes it’s just like, I can’t be bothered.

They’re not going to know what it is anyway.

What’s the point?

Are they even going to be interested?

So they make the assumption, “oh, did you break your leg or sprain your ankle?”

I was just like, yeah. It was just easier.

Agreed. So much easier.

Yeah. “I had surgery”, “did you have a knee replacement?”. “Sure, let’s just go with that”.

People understand that.

Yeah, there’s some days you just can’t be bothered.

I do kickboxing.

Oh, wow.

I would say I’d injured it doing a sport or something. Because I actually have. due to the EDS.

And that is definitely more acceptable to people than I live with a health condition.

 

With Ehlers-Danlos syndrome, we find that there’s a combination of conditions on top.

Have you been diagnosed with anything else?

A number of things.

I don’t have the traditional POTS diagnosis that a lot of hypermobile Ehlers- Danlos 

folks have.

I do have other autonomic dysfunction in terms of temperature regulation, blood pressure, 

heart rate, things like that. It’s just not officially POTS.

And a lot of what I do have stems from the Ehlers-Danlos.

So, for example, I have really bad acid reflux, like almost needs surgical intervention acid 

Reflux, but we’re assuming it’s because my esophagus doesn’t close the way it’s supposed to.

Let’s see what else…chronic pain, obviously.

Yeah, everything I have seems to be a symptom of the Ehlers-Danlos.

And then if it’s not, one day we find out that it actually is.

Yeah.

 

You’re clearly very resilient.

Thank you.

What would you say are your top three resilience tools?

Oh, I have been needing to dip into this bag already this week.

So one of the big ones is connecting with other people with disabilities, invisible disabilities, Ehlers-Danlos sometimes specifically, because as we’ve done during this podcast 

recording in just this short time, I’ve said something and both of you start nodding and have 

your own stories to share. So it just makes me feel less alone.

It doesn’t fix people being nosy and it doesn’t fix people making judgements about how you 

look, but at least you know that you’ve got people out there who understand you and can be in your corner, even if you just need to vent.

 

And that would probably be my second coping tool, just venting.

Again, whether that’s to my friends or my people with Ehlers-Danlos, sometimes to my 

husband, who doesn’t have Ehlers-Danlos, but is exceptionally supportive.

I won the lottery when it came to supportive spouses.

I’m sorry, everyone else.

Don’t be sorry. (all laughing)

I’m just, I feel very, very lucky.

So it would be connecting with people who have disabilities, illnesses, Ehlers-Danlos, 

venting.

 

And then I’m a writer, so journalling. For the longest time I resisted it. I’m like, “journalling.

What the heck? That’s not going to be helpful. I’m a writer. I write anyway”.

But in the last couple of years, it has been something that I’ve turned to a lot more.

And while I’m somebody who loves to write by hand, because I’m old school – I was an 

English teacher for a while – I have definitely had to switch to computer journalling, 

typing, because again, a lot easier with the arthritic hands.

 

 

 

I’m also very lucky in regards to having a supportive partner who I can vent to and 

even moreso having Marcia. I can text her or call her or leave a voicenote and vice versa and we just get it and we 

can offload.

Definitely.

But we always check-in first to see if we are in the space to receive it.

Yeah. I’d say, please don’t listen to it if you’re not in the zone or if you’re having a bad 

day because I’m about to rip! 

Yeah, that’s definitely been great for us since meeting because Marcia was the very first person I met who also had EDS, who could understand what I was experiencing.

So yeah, our partnership has been a godsend, basically.

It’s fantastic being able to have a friendship where we can just vent if we’re having a 

crappy day or whatever the case may be, we can say it and not feel judged or guilty 

about it or any of those things, because we know each other gets it and we don’t have to explain anything you know. So that’s really helpful.

 

I have a close friend who I didn’t meet until maybe about six years ago, who I can just take a screenshot of a MyChart message from a doctor and send it to her and she immediately 

knows why it upset me.

Most people would read that and be like, what’s wrong with that?

There’s nothing wrong with your labs. What else are they going to do? And I’m like, never mind. I’ll just send it to Sam. She’ll get it.

Yeah, that is really, really important.

Having that, you know, at least one person, but if you’ve got a few so that that one 

person doesn’t get all of all the time.

But yeah, having that is definitely really important I think, and something that the 

community should take on board if it’s possible for them.

And I think there’s a lot of groups out there now as well.

Social media groups, so many, you know, on Facebook, where people can have these 

conversations, bounce around ideas, get advice around symptoms and get support.

So that a really important aspect of living with conditions that we live with.

Yeah, definitely.

 

I was just saying in that same vein. I’ve had a lot of people contact me when they find a 

friend or a family member that has Ehlers-Danlos and they say “you have it. Would you 

be willing to talk to them?”, and I’m like, “absolutely, of course”.

And I was like, what if there was an Ehlers-Danlos mentoring program sort of where

people who had Ehlers-Danlos or who have had it for a while can kind of get hooked up 

with somebody who has just been diagnosed and wants that connection, just to be that 

support person, not necessarily in a “here’s the tests you should get done and here’s the 

doctors you should see”, but emotional support of somebody who’s like “yep it’s going to 

be harder than you’re used to”. It’s just something that’s been rolling around in my brain for a number of years, you know.

If anybody is interested in helping get that started, let me know, because I think it could be 

super helpful to the newly diagnosed people who kind of go and find lots of websites and 

resources online or from their providers.

And it’s just a lot of medical stuff. It’s a lot of symptoms and that kind of stuff.

But the day-to-day coping doesn’t always get addressed as well as we would like it to.

Absolutely.

And that’s why I started doing the Chronic Warriors Academy, because the focus 

around that is very much about psychological and emotional aspects, because it’s a 

roller coaster.

For many people, you don’t know what one day is going to be like from the next. 

The things that you are constantly grieving about that you maybe wanted to do with 

your life and didn’t get to do or used to be able to do and then you can’t do it.

It’s a constant emotional roller coaster.

So I create courses and do coaching around that.

But I think the idea of what you’re talking about is an EDS buddy, I guess.

Yeah.

Yeah.

Which is actually a really great idea. I like that. Definitely something to think about there.

 

So following on from what you were saying, how do you think our listeners could use 

Invisible Disabilities Week as a starting point to become better allies?

So for people who are living with invisible illnesses, I think one of the most important things is, if they feel comfortable, sharing their story in situations where they’re not emotionally 

charged.

Not that you can’t share your story then, but I’m just thinking about being approached in a parking lot while you’re in pain is not the greatest time to give a lecture on invisible disability.

You can if you want, but I will not be coming to bail you out of jail. (All laughing)

So one of the things that I started doing in my baby years of EDS advocacy was during 

Ehlers-Danlos Awareness Month, I started just posting facts about Ehlers-Danlos.

And that just got people on my social media who mostly knew that I have 

Ehlers-Danlos, but to know a little bit more about it and about the different symptoms and

different ways it appears, different types and how to pronounce it and those kinds of things.

And then a couple of years later, I did it again, and then a couple of years later, I focused 

more on my day-to-day living with Ehlers-Danlos.

I took pictures and explained like, okay, today I’m exhausted because I cleaned the bathroom.

And I know a lot of you could clean the bathroom without being exhausted.

So for me, it just took little baby steps from talking about very factual information to actually sharing photos and slightly more personal stuff.

And I think in whatever way people feel comfortable, whether that’s social media, whether 

that’s one-on-one, whether that’s giving talks to community groups or international groups,

sharing that story, so more narratives about what disability looks like and what people with 

disabilities experience exist out there.

The more narratives we have, the more people who are telling their stories, the more varied 

Experiences will help people understand.

And that’s people with both visible disabilities and invisible disabilities, because even as 

somebody with my own invisible disability, I’ll see somebody and being like, “what are you 

using that parking space or assistive device, or getting special treatment for?”.

And I have to stop myself and be like, “no, you don’t know. Let them do their thing”.

And then for the people who don’t have an invisible disability or don’t know a lot about it or want to learn more about it, I suggest looking at the wealth of information online about 

invisible disability. Whether that is personal narratives from people telling their stories or 

more factual information that you can find on chronicpainpartners.com, and everything in 

between.

There’s humorous stuff, there’s listicles, there’s podcasts, there’s vlodcasts, there’s webinars 

from all sorts of educational events all over the world.

Like I said, I was a former teacher, so education is a big push of mine, because if you’re not 

educated on something, you don’t have a seat at the table.

You can certainly listen and learn, there’s nothing wrong with that.

But if you’re just like, “nope, I don’t want to learn about Ehlers-Danlos, even though my 

friend has it, and I’m going to ask all these really rude questions because I can’t be

bothered to educate myself”. That’s the worst kind of ignorance to me.

Feel free to ask questions to people who are willing to answer them, but be willing to learn 

and educate yourself. Otherwise, we have other things to do with our very, very limited time

and energy.

Absolutely. And I think those people who are in your life that don’t show any form of 

interest or empathy, you kind of know where in your life they fit.

Yep.

I think it’s important to be clear on who those people are.

Otherwise, what can happen is that you’re constantly being disappointed because you’renot getting either the support or the interest or the empathy or whatever it is you need.

So I think that’s really, really important and something that I talk about a lot, actually, on my page.

Yeah.

 

For listeners, if you could go over again, if anybody wants to support, be involved or 

donate to the chronic pain partners, how best can they find you?

They can find us at our website, which again is www.chronicpainpartners, just all one word 

spelled out, dot com.

And there you will find articles, webinars, links for donations, all sorts of great stuff.

If you have ideas for something that you want to write, if you want to write for us or 

volunteer for us in another way. Even if you don’t know exactly what you want to do, tell us what skills you have and we’re happy to connect with you and see what way we can add you 

to our growing, small, but mighty army of people here.

We are also on Facebook. We are on Twitter/X. I believe we’re still there.

And we are on Blue Sky. I believe we’re on Instagram. I think we’re cross-posting on 

Facebook and Instagram.

Yes, our social media manager does a wonderful job. I have a hard time tracking down 

where she is posting all of our stuff.

We do have a YouTube channel as well.

Karina, my editor – but also kind of the glue that holds Chronic Pain Partners together at the 

moment – does a lot of filmmaking and does some wonderful, wonderful work.

So her films and some other short films are available for viewing both on our website and on our YouTube channel.

There’s a lot of different ways to involve yourself with our content and with us in general.

Thank you.

That’s fantastic.

Thank you.

 

It’s been wonderful speaking with you. Thank you for the insight and the background.

And we look forward to working with you and with Chronic Pain Partners.

Yeah, I’m excited to have you guys here as well.

It was great sharing this with you and learning a little bit more about you too as well.

Okay, lovely.

So yeah, we’re coming to the end of our first episode, and it’s been a great way to kick 

off with you, Kate. We really, really appreciate you coming on and speaking with us.

Thank you so much.

So until next time, take care of yourselves and each other.

 

You have been listening to EDS Unplugged, brought to you by Chronic Pain Partners. (Quiet music in the background)