Welcome to End the Seams, a podcast by Broken and Mended with your host, David Heffler.
Well, hello and welcome back to End the Seams.
And I'm very excited to be back on the show today.
And I have a guest, Sarah Willoughby is with me.
And Sarah is the founder of a very important conference for people with chronic illness
called Diamonds Conference.
And that's been going on for several years.
And she's going to tell us a little bit about that here in a moment.
I got connected with Sarah through a mutual contact with a ministry called Chronic Joy.
I've talked about them before and they're always good to check out as well.
That led to a conversation between Sarah and I and which has led to an opportunity for
me to get to speak at Diamonds Conference, the summer version of that, which is coming
up here in just a few weeks.
And so I'm excited for that opportunity and I wanted to take advantage of that opportunity
to talk with Sarah and to be able to get people excited about that conference and hopefully
get them signed up.
And I'll mention at the onset here that it is a free conference for those who participate
in it live.
And I really hope that a lot of people will take the time to check it out.
And I think it will be a great source of encouragement and spiritual formation for people who are
struggling with chronic illness and chronic pain.
And so Sarah, thank you very much for being with us and taking the time.
And I just want to ask you if you can begin by telling our listeners a little bit about
yourself and where you're from and what your story with chronic illness has been.
Yeah.
Thank you for having me, David.
And we are so excited to have you speaking at this coming event.
Yeah, my team is just very excited to have you on board.
Thank you.
Where I'm from is a question that I never know how to answer because I have grown up
living all over the place, moving around the US and internationally for various reasons.
But yeah, so I first, yeah, my story with chronic illness, I first got sick when I was
14, just turned 14.
And I was undiagnosed for a long time.
I was undiagnosed for nine months, which I know in the chronic illness world is honestly
not that long to be undiagnosed.
Many people have to walk through that for a lot longer.
But yeah, I was living in Washington state at the time.
It was beautiful, evergreen, rainy state.
And I loved the lifestyle and the environment, but my body did not.
And so long story short, eventually I was diagnosed with toxic mold poisoning, Lyme
disease and multiple chemical sensitivity.
And so from there, our family didn't know what to do.
So we went to Arizona, nice, dry desert Arizona where we didn't think there was going to be
any mold, which is not entirely true.
But it also, we had friends there that were the only people we'd ever heard of that had
any experience with toxic mold poisoning.
And so we went, we went, moved there, no place to live for a while in that process with mold
poisoning and mycotoxins from mold that were like just gotten to everything we owned because
my mold exposure was from mold that was like growing in our walls and we didn't know that.
And so in that process, we lost a lot of our like the majority of our material possessions.
We just uprooted unexpectedly as a family and found ourselves in Arizona.
And so we were house hunting for a while trying to find a place to live that didn't have water
damage, which was very hard and that was didn't have like, it was brand new without water damage.
It had all these, you know, paint chemicals and things like that that because my liver
was wrecked, could not handle.
And so it was a long process, but God provided a place that was just exactly what we needed.
He provided the funds that we didn't have for that place to live.
And we moved in and I started to do better.
And then one day my mom found me on the bathroom floor and I couldn't move and I couldn't feed
myself and I couldn't go to the bathroom by myself and I was just, just not functioning.
And so out of desperation, we tried one more doctor.
And she was doctor, I think number 17, because people had been like, well, I don't know what
to do with you.
Try this specialist.
I don't know the answer to this specialist.
And so we just got passed along from doctor to doctor.
But this this doctor that was recommended by a family friend, she ended up being able
to help me.
And it was like, she happened to have a specialty and she happened to have a practice 30 minutes
away and she happened to have an opening for a new patient and just all these things that
were just so clearly God, God working and God, honestly, just really protecting me.
Because when we went to see her, she told my my parents, if I hadn't come in, I would
have died within a month.
Not something that every 15 year old hears.
And so, yeah, it was a long process, long roller coaster of healing.
I think we before all of this, I used to I didn't think healing was so complicated.
I didn't think it was so long.
I didn't know what the word chronicment.
But yeah, so it was a couple years of that healing process of flare ups and going back
and then taking steps forward and falling back again.
But yeah, that was the general picture of what my chronic illness journey was like up
until about 18.
So and may I ask how old are you now?
I am about to turn 22.
Okay.
So between 18 and almost 22, has that has it been better for you?
Has been able to function better?
Yeah.
So it's again, it's been just a process and a stepping stone of healing and recovering.
But thankfully, I started to be able to function more normally and then more start to branch
out, start to have like dreams that had died when I was like, I'm going to be chronically
ill in this way for the rest of my life.
And just, you know, dreams have died.
And so they started to be God resurrected them and he gave some of them back to me.
And yeah, so now I am still sensitive to more and I'm still sensitive to chemicals.
I still can't eat a lot of variety, but I'm able to be in much lower daily pain and be
able to think and to function.
Yeah, like in the ways that I would like to.
Yeah.
Well, I'm very glad to hear that.
I know that part of your journey and maybe a really big turning point in your journey
in terms of coming into ministry to others with chronic illness has to do with a book
you wrote.
And I'll just say as an aside, my family has benefited from that as well because my own
son was he became right before he was 16, became chronically ill.
And you know, we started to have, you know, quite a bit of struggle seeing him change
so much because he just didn't have the energy, you know, to, to do any of the stuff that
he liked to do for a while.
And I found your book online and got it for him.
And I know it was a blessing to him.
So tell us a little bit about that book and how you came to write that.
Yeah, just tell us a little bit, a little bit about the title to in case someone wants
to look it up and get it for themselves.
Yeah, I am so glad to hear that it has been a blessing to your son.
And I know that's hard not just for the person who is sick, but the family.
It's hard.
It's a whole, whole community journey to walk through.
But yeah, my book is called He's Making Diamonds, a Team Scott for Faith or Chronicleness.
When I was, so I got sick, I was supposed to die, then I didn't die.
But I still couldn't really function well and do the things that I wanted to do.
And so I found myself back in, I found myself housebound and I didn't know what to do.
But what I could do was write because I could do that from my bed.
And BrainFog definitely made that its challenge many days.
But some of you know what I'm talking about.
Yeah, but I just wrote out of my questions of, God, why is this happening?
And why now and why me and why my family and how do I pray when I can't think in full sentences?
And how do I honor you when I serve you when I can't even take care of myself?
And how do I hold on to hope when hope is just disappointed over and over and over again?
And what even is hope?
Am I hoping in the wrong things?
And so just all these questions are where my book came from.
Before that, when I got sick, I started writing a blog and then people started commenting and
saying, wait, this is my story too.
And sharing their stories with me.
And so that's really where the book came from.
So I spent that year focusing on writing this book, editing it, getting it to the point of publication.
And yeah, so it's available on Amazon or BarnesandNobles.com.
He's making diamonds.
But yeah, so then I finished the book and was like, now what?
Which is where the diamonds conference came from.
OK, well, and I'll put a link to a couple of those places, Barnes and Noble and Amazon,
in our show notes, so that people can get that easily.
And thank you for telling us about that.
And and so diamonds conference grew out of that.
Now, if there's going to be some people listening to this, they don't know what diamonds conference is.
And so tell me what you can about that and how that came about.
And what what it is that you see God doing in that conference for people with chronic illness?
Yeah, so I so I got to this point and I was like, well, now what do I do?
Because I still couldn't do everything I wanted to.
So I couldn't engage with my local community the way that I wanted to.
And a friend just suggested like, what about a she gave me a long bullet pointed
list, one of those things was like an online conference in my naivety.
I said, that sounds like fun.
And I had no idea what that entailed.
But yeah, we are about to host our eighth event June 23rd and 24th.
And so the diamonds conferences is it is an online conference for Christians with chronic illnesses.
It's like you were saying, it's free to attend live.
But what it encompasses is a lot of different things, primarily it's like different speakers,
like yourself or just we've had a lot of speakers over the years sharing what they have learned,
what God is teaching them through their chronic illness or their chronic pain.
And it's a chance to come together as a community and to engage with other people who get it.
And you'll understand.
So part of that is I think there's also like a private fun community for attendees to engage with each other throughout the year.
We have the study guide to help take the content and apply it to your own life and get your own.
But yeah, I think one of the biggest questions we often get is like, who is this for?
It's for those who are chronically ill.
But well, what does that mean?
I think the question I get most often is, am I allowed to come?
Like, am I sick enough?
I only have chronic migraines or I only have this or that.
And I'm like, that's that's not how this is about.
It's human hearts are amazingly like.
So those who are suffering and those who love those who are suffering.
Yeah, well, well put, you know, I've experienced questions like that with our support groups, too.
Sometimes people feel like, well, should I be in here because others are sicker than me?
And I think if you feel that you need encouragement, we want you to be here.
And, you know, and I think it's never about how much more someone is suffering.
What we're going through is is difficult for the person that's going through it.
And and so, yeah, that's good.
And and certainly want to encourage everyone, you know, to listen to this podcast to please be a part of the conference.
And tell us the theme for this particular one.
Yeah, the theme for this summer event is resting in the storm.
Yeah, for people who are chronically ill, we can think that I've struggled with these things.
I felt like I am resting so much already.
All I do is lie in bed.
So what does it mean to rest?
Or I don't deserve to rest because that's all I do.
So so what's my purpose and where's my purpose?
Because I'm I'm not doing anything or or whatever.
But rest is an act of worship to God.
Rest is what Jesus modeled.
Rest is possible even in the middle of chaos, even in the middle of suffering.
And so that we're just diving into all of that with probably coming from the questions again, just like the book.
Yeah.
Well, you know, I was encouraging to me to know I was already thinking about
before I knew the theme, kind of what I was going to be wanting to talk about.
And then it just kind of fit.
I felt like really perfectly with that theme because I'm talking just for my reader.
I'm sorry, my listeners benefit.
Want to, you know, say that what I'm going to be talking about has to do with kind of the way that Americans and Westerners in general often view time and productivity and how we attach value to it.
So that when we're not able to do what we used to be able to do, we accept messages from our culture that were less valuable.
And so I'm wanting to articulate a view of time that's completely different than that, which is, you know, a time that is that is focused in the quality of our interactions and relationships.
And it's not tied to productivity and and that there's grace in that.
And that grace comes from this idea of how we can be able to do what we used to do.
And this idea of rest, which is embedded in the creation itself and is the first day that is set aside.
First thing that the Bible says is made holy is the Sabbath, which is, you know, which is that means rest, you know.
And so I'm so I'm excited about that because I just feel like this is such an important thing for people with chronic illness to be able to grasp.
But they are valued for who they are for the relationship with God and the relationship with others, not because they can do, you know, A, B and C or do this much of that and spend this much time doing that and or because of their careers.
Or and and it's a very counter cultural message, but it is one that's always been at the heart of the kingdom of God.
And and yet, you know, Jesus, who tells us, you know, all those who are weary and in heavy laden or burdened, depending on which translation used there to to come under me and I will give you rest.
And like you said, that's it's worship, it's grace, it's it's beautiful.
So it's exciting and so so glad to get to partake in it and so glad for others that we'll get to as well and looking forward to hearing from the other speakers.
You know, you kind of touched on this a little bit through the process of writing your your book and then how it evolved into the Diamond Conference.
But I wanted to our Diamonds Conference, I wanted to ask just about how your relationship with God has changed or maybe your perspective on that through your journey with chronic illness.
So as you're kind of taking a you said you're 22 now are about to be and started at 14, you got the eight year snapshot.
How would you say your relationship with God has changed through this experience?
So when I I grew up in a Christian home, I was the pastor's kid.
And I think somewhere along the line in that time before I got sick, my faith became my own and I started to like seek God for myself and spend time with God on my own.
But it was really bubble wrapped, I had a really bubble wrapped faith, I think, in that I didn't really face any major challenges or suffering or anything like that.
And so when I got sick, it's really, I had to confront my faith is my, can my face stand up to what I'm facing?
Can God stand up to all the questions that I'm having and the suffering that my family was going through that I was going through?
And I think of a temptation of people and me can be to hide from our questions or to shove them aside to be like, well, we shouldn't have these questions.
We should know the answers to these things or or whatever. But I think that really separates us from God. I think those things become barriers for coming close to him and sharing our true like our their deepest heart with him.
And so what what I did was I started to, I just asked God these questions and that's where the book came from and the conference and all that was asking these questions.
But before it was all this public stuff, it was, and even while it was that public stuff, it was in my heart, it was, it was sitting there and crying and not having answers and saying God, why and God how and and asking him these things.
And that's where I think the biggest, the greatest intimacy with him came in that not to say that it was like this magical overnight thing. There were days where I was just unable to engage with God in the way I wanted to.
There were times where I was angry, where I was terrified, where I was grieving. And there are two occasions where I remember just just giving up like God, I'm just can't I can't pursue you anymore.
I don't know where to go from here and he met me in that he met me in that honesty and those questions and those that sharing of the things that I didn't think I was supposed to be feeling or thinking and I think that's where the like greatest intimacy with him is that I've experienced in my short young life is in those moments.
And so there was that and then in the like darkest moments, there was that intimacy and then as I started to physically heal.
I got all turned up, so down again. I was like, okay, like suffering had forced me to go to God constantly every day because I just couldn't do it on my own and then things got like a little situationally easier.
And I was so afraid of losing that intimacy with him. I was so like, well, when I'm not forced to him every day, am I actually going to be like coming to him in that way? Am I going to be close to him?
And how is this going to look in a new season of life? And so that started new wrestling and the healing process, you would think would be all joyful and cheerful and it was not.
It was grief and it was processing and it was trauma and it was healing. And so, yeah, it's just been an ongoing journey and an ongoing process.
Started out bubble wrapped, got to have some intimacy. It was really sweet and beautiful. And then I'm still figuring out what it looks like in this new season of life.
Wow. Well, that's, thank you for sharing that. And, you know, that is such an interesting perspective you shared.
I think not necessarily unique in the sense that others don't experience it, but maybe unique in a sense that we don't really draw attention to the idea that we're always going through a process of if we're gaining something, we're losing something else.
So whereas, you know, I think about early on in your journey, you're losing physical health and the things that come with that, but you're gaining this deeper intimacy with God and in a more authentic faith because of what you're wrestling with.
But then as you get better, you start healing, you have a sense of, or at least a fear of losing something that has been gained through that experience.
It just kind of shows that it's really this whole chronic illness journey, both the good and the bad is always a roller coaster in some ways, you know, one in which we know God's got us.
But, you know, we don't can't necessarily see the hills and the turns ahead either, you know, and so that that can make it pretty challenging.
So yeah, thank you for sharing that. That's that's given me something to think about a little bit because I'm in a I'm in a season right now, where I've been feeling quite a bit better than I had in than I have in recent years, which I'm very grateful for.
But I had I need to I need to contemplate some of these other these other things to that it's never a simple process.
And so maybe in all seasons in life, we can we can learn that when we draw near to God, he draws near to us. So thank you. Thank you for that.
I know to we've talked a little bit about your age and I even know my age my problem started at think 35 I believe.
And, you know, and, and I would get a lot of times from older people or people in the church, you know, oh, you're too young for that.
You know, which was not really that helpful, by the way, and you probably have heard some versions of that.
But I'm wondering you have a perspective as someone who's had to deal with this from a very young age.
And what is something that you would want to share with a younger person, you know, that younger person we can define them just anyone in their their teens or early 20s or something like that, you know, and what is something that you would want them to know at the beginning of their journey.
And kind of a different way to look at the same question, but whatever works best in terms of answering it may be a, but you wish that you knew at the beginning of your journey.
Um, yeah, I don't know if this is age specific, although there I feel like maybe it applies, especially to younger people, but you're not alone.
And I wish I'd known that I wasn't alone. I think it's so I felt like I was the only teenager sitting there watching my friends play and watching my friends be normal.
And I was the only one sitting on the sidelines and I was the only one unable and I was the only one who felt like my body was really, really old.
Um, yeah, I just, I really, I think any, any person with chronic illness, I just want you to know you're not, you're not alone because there are people who get it. I think, don't maybe quote me on this, although this interview so whatever but I think it's like 90, 90 million Americans that are
uh, chronically ill according to the CDC or I think this was a study in 2018. Um, but that's insane. Like you're, you're not the only one with that's going through what you're going through and because humans are amazingly alike.
You're not the only one with the questions that you have. You're not, um, you're not alone in what you're going through. And even if, even if no other person understood, because honestly, you are the only person going through the exact set of circumstances you are with the past that you have and the future that you have and the
dreams that you have. And so even if no one else understands you, God does. He sees you. He understands you. And he's also, he loves you in that and he's with you in that he doesn't abandon us. He doesn't leave us to figure it out on our own.
And so, yeah, ultimately what I want every person with a chronic illness to know him, but especially the young people is that you are not alone.
Yeah, awesome advice and insight and so important for people to realize. And I know it's a big part of, I think what chronic illness ministry is about whatever kind of flavor of chronic illness ministry we're talking about conferences support groups online resources and or podcast whatever it might be that that is the reason why we're talking about it is
not just because it's maybe therapeutic for us for talking about it because we want people to know that they're not alone and even as we share stories that hopefully they their stories are unique to them, but they will recognize things in our stories that are reflected in their own kind of like you talked about where
people were telling you when you were writing the blog and you know that's my story to that there are these commonalities with the struggles with the questions and and with some of the experiences that we can lean into God and learn from and and so yeah that's that's really important and
that kind of brings us full circle and talking about the the Diamond Conference or dying I keep on it. It's diamonds plural right that's a diamonds conference because we're the diamonds in this case yeah and I talked about the summer theme already.
Well, actually I did want to mention something else for I got to that and I think you barely touched on it earlier the slack community.
Yesterday as part of just kind of, you know, getting familiar more with the your ministry and the diamonds conference that's upcoming and I think I saw like over 300 people that were, you know, in that community. Now is this something that people can join directly or they have to receive an invitation
to work if someone and I'm asking someone doesn't know anything really about slack because I didn't until I I got on to this. You know yesterday is that something people can join through a link or how does that work.
Yeah.
So we've been in your website at the moment. So my, I think that it will be on our website diamonds conference. If you just Google that it will come up. But if you want to be sure you can go through that diamonds conference website and sign up for our summer event.
Even if you're not able to attend live and you can get all the resources that way, including all the community information. But yeah, the community is running throughout the year we do different connecting things on there.
Places to just talk with different people who get get what's going on.
But actually, another recommendation is people hope this is this is not connected like affiliated or anything but people hope has a great like
ongoing program.
It's called focus fix and that's a way that maybe to like have resources and people connection throughout the year.
And I feel like it's often a chance to get to come together. But yeah, we totally have a community. It's been active for a couple years and still daily active.
Okay, well I'll try to include as much of the, you know, the links and, you know, certainly to your website and the registration for the conference and like you said hopefully they'll be able to define the information there but I just wanted to come back to that point just because
I think it's something about helping people realize they're not alone and maybe seeing a community like that like just visually seeing oh my goodness are hundreds of people in this community, which is just one small fraction of like you mentioned all the
millions of people out there that are struggling with, you know, chronic illness and chronic pain. And so yeah, so thank you for that. I think that's that's that's really a neat thing and a great source of support.
Is there anything else about diamonds conference or the future of diamonds conference that you'd want to want to share or even about the upcoming summer event.
Yeah, so I thought about community, if you don't mind. But I think often as those of us who are currently we can think that we're the only ones because we're, you know, we're back at housebound and bedridden or we are just not able to engage and then when we do make it out into
community, the other chronic people are also stuck at home or at the doctors or whatever and so yeah it can be easy to think they are there but they totally are and I think online there's so many tools for connecting.
And so diamonds. Yeah, we have we usually do two events a year this summer event is actually like a mini conference it's like very bite size easy to just take it. And then the winter, including this coming winter we normally have a longer event with like 20 something speakers
so we can plan on continuing to do that for the next couple years we are in the process of becoming a official nonprofit at the moment. And also if you are interested in getting involved beyond just attending, we are always looking for volunteer staff members so we have about 30 volunteer staff
in the moment which is amazing because the first event it was me teenage Sarah in her bedroom with two friends who took pity on her.
Not a good idea.
Yeah, so where we're currently I mean looking for a website designer looking for some people to help with moderators or to help with some behind the scenes stuff so anyone's interested in getting involved further we can you can whether that's joining the party or whatever there's lots of options, and you can find that all at the website.
Okay, well, very good. And that is amazing that you have so many people willing to give their time for this this mission and this ministry and, and, you know, it, that's just cool. It's cool to see God moving people together to do something bigger than any one person can do by themselves.
So thank you so much for sharing that opportunity as well as just that story. And again, I want to, you know, thank you for coming on in the same today to talk to us and I know it'll be a blessing to both young and old and in between, you know, for people to hear some of your
story and, and to see what God has done in that story to not only be a blessing to you but also that blessing overflows to other people and that encouragement so thank you so much for that.
And I want to go ahead and you know just kind of close our time out and just kind of remind our listeners that you can find anything you need to about broken amended a broken amended org including this podcast will be available there as well as
the other places like Spotify and all that. Of course, if you're listening to the podcast, you don't need that information because you're listening to it. But anyway, it's available in a lot of different places and we have a blog there as well other resources ways to connect to broken
amended on Facebook as well as a way to join our sport groups. And I will also include the information you can find in the show notes to get connected with diamonds conference and the other related community and service opportunities that we mentioned in our conversation.
And so for now I'm going to go ahead and sign off and until next time we hope that you keep drawing closer to Jesus journey.