At age 14 Sarah Willoughby's world turned upside down when she fell seriously ill. Sarah went from trail running and adventuring to spending her days sick in bed. Doctors struggled to diagnose her condition until they finally discovered the culprit: toxic mold. Facing the severity of her condition, Sarah sought the Lord. She joins the podcast to share how her faith in Christ has sustained her through the trials of chronic illness, and to help you find hope amid your own hardships.
At age 14 Sarah Willoughby's world turned upside down when she fell seriously ill. Sarah went from trail running and adventuring to spending her days sick in bed. Doctors struggled to diagnose her condition until they finally discovered the culprit: toxic mold. Facing the severity of her condition, Sarah sought the Lord. She joins the podcast to share how her faith in Christ has sustained her through the trials of chronic illness and to help you find hope amid your own hardships.
Sarah is the author of He's Making Diamonds: A Teen's Thoughts on Faith Through Chronic Illness and the host of the Diamonds conference, a free online conference for Christians with chronic illnesses.
Learn more at sgwilloughby.com, Instagram: @sgwilloughby, and Twitter: @sgwilloughby.
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Crystal Keating:
At the tender age of 14, Sarah Willoughby got sick, very sick. After multiple tests and doctor's visits, medical professionals detected the cause of her illness, toxic mold. Sarah went from being a healthy, active, and vibrant young woman to embracing the reality that her illness impacted by Lyme disease and multiple chemical sensitivity may be around for much longer than she ever expected.
Slowly. She began regaining health, and now at age 21, she's joining us to talk about navigating faith in the midst of long-term sickness. Things have been tough for her, and she still has ups and downs, but through it all, God has done so much more in her life and in the lives of others than she ever imagined.
Welcome to the podcast, Sarah. It's so good to have you.
Sarah Willoughby:
Thank you. I'm so excited to be here.
Crystal Keating:
Well, we're excited to have you and to talk about this really important topic that I know we've talked about a handful of times on the podcast, but we can't say it enough because we have so many people who write to our ministry, who live with conditions that seem to hang on and we hear from people with chronic pain, chronic illness.
I just really appreciate you coming on to share a bit of your story and the hope that you found. So, Sarah, I'd love if you could just take usto the time in your life around age 14 when you first noticed, hey, I'm not feeling right. What was it like to go from being unwell to discovering your body was fighting the effects of toxic mold, and how did this happen?
Sarah Willoughby:
Yeah, as a kid I was always the one who was having adventures. I was keeping up with my teenage brother, playing paintball and going fishing, and I loved trail running. And so, I was a very active kid. I know that for a lot of people, chronic conditions, chronic illness tend to come on slowly.
You might not even realize that they're happening as they do. But for me, it was pretty overnight because there was a trigger that caused my health to kind of spiral and keep spiraling. So, I had a strep throat and a tonsil abscess, and so, I recovered from that, but my body just never recovered, and I started to develop all these weird symptoms and then was undiagnosed for a long time. Every week or so I'd come to my mom like, all right, this is happening now. Why? What's going on?
Crystal Keating:
What were some of those like unusual symptoms you were experiencing after you got over the strep throat? What were you noticing?
Sarah Willoughby:
So, the first ones were mostly digestion related of just like pain, abdominal bloating, other not digesting-related things. And then it progressed to more like muscle weakness. Muscle failure. I had a lot of organ issues, whether that was spleen or liver or some vision issues, things like that. And then just lots of musculoskeletal pain in my joints and things like that. So not normal, 14, 15-year-old things.
Crystal Keating:
No. And it almost sounds like they seem so unrelated to one another.
Sarah Willoughby:
Exactly, right. So, because of that, it was really hard to get a diagnosis. I kind of got passed from doctor to doctor going, oh, I don't know, try this specialist. I don't know, try this specialist.
And so, lots of misdiagnoses. But I think that was what eventually led to the mold poisoning diagnosis because it's a poison. So, it affected all the systems of my body. But it was definitely a challenge to get to that diagnosis.
Crystal Keating:
And so, once you did identify, hey, there is something going on, it's probably mold related, what were the next steps for you after that? Was there treatment? Did you get on any kind of protocol? What was the prognosis?
Sarah Willoughby:
Thankfully at the same point that I was diagnosed, we discovered that there was toxic mold growing in the walls of the home that my family was renting.
So, the first step was to get away from the exposure to this toxin that was affecting my body, and then from there, I tried a lot of detoxing treatments, a lot of alternative health stuff cuz it's just a little more uncommon. Environmental illnesses are a little more uncommon, I guess, in the Western medical world.
And so that was helping for a while until we realized that I needed a lot of organ support. So, a lot of nutrition was really the biggest thing, getting out of the poison and rebuilding my body by nutrition.
Crystal Keating:
I think it's hopeful to have a direction when you are dealing with a chronic condition.
And so, it sounds like you and your family moved. But then there were some other diagnoses for you, right? Lyme disease and multiple chemical sensitivity. When did those come along?
Sarah Willoughby:
Yeah. So, we moved, we moved states. So, we started seeing yet another doctor. I think that was doctor number 18.
Crystal Keating:
Oh, my goodness. That must have been exhausting.
Sarah Willoughby:
Yeah. It was a long process of being poked and prodded by a lot of different people. She diagnosed me with Lyme disease and multiple chemical sensitivity. Often chronic illnesses I feel like come in pairs or more just because one thing affects your body and suddenly, you're weak and susceptible to other things as well.
Crystal Keating:
Well, you mentioned seeing 18 doctors and amongst those 18 doctors there's multiple perspectives and you're being tested and probably going through many exams and many blood panels and trying to figure out what's going on.
And you've talked openly about experiencing medical PTSD, something that we've touched on. Would you like to share more about the impact long-term medical care has had on you and how you've worked through healing from some of the trauma? I mean, you're already dealing with the effects in your body and those things do have an effect on our mind and on our spirits.
Sarah Willoughby:
I think for a long time I was just too sick to process or realize or understand everything that was going on. It was just surviving and staying alive. So, I think for me, a lot of understanding, realizing, having to process the traumatic experiences that I had been through came as I came out of flares, as my body started to do a little better for a while.
I mean, there's a lot of different layers to the trauma that someone with a chronic illness experiences. There's maybe the trauma of suddenly, like in the case of toxic mold, losing your home, losing your belongings, and having to move, maybe losing friends and family.
But people often lose that community as well, no matter what health challenges that are going on, because it's just a lifestyle change. So, there's all that relational stuff. And then there's also the stuff of like medical related things where it's having lots of invasive treatments, or for me as well, there was a near-death experience that I had with the mold poisoning because my body was just so sick that I didn't know it, but I was dying. And so, one of the doctors that was able to finally give me effective treatment, she said if I hadn't come in, then I would've died within a month.
Crystal Keating:
Wow. So, you were what she would say, near the end, but did you sense that? Did you feel that?
Sarah Willoughby:
Yes, actually. So, she told my parents this, but none of them told me until I realized it on my own. And so, I kind of brought it up a few months later and was like, how close was I?
Crystal Keating:
How, how did that impact you just even as you looked ahead to the future? Often when we experience something like that, there's a lot of realizations that we may have. Our values can shift. What was that like for you?
Sarah Willoughby:
I think it depended on the point in processing that I was at. They're both maybe positive and negative things.
Like on the one hand, I think I was blessed to have a perspective shift at a very young age that most of my teenage peers were not. You know, they were focused on grades and significant others, and none of those are unimportant, but I was really just forced to focus on the things that are eternal because I was faced with life and death, forcing you to take a good look at things.
And so, it gave me compassion for those who are experiencing similar things. It gave me courage, I think, to say things and do things that I might not have otherwise. I think it gave me desire to use all the time in my life that I have really intentionally and well and faithfully.
But then on the flip side, I since then have struggled with fears of premature death or fears of the death of my loved ones or struggling to allow new doctors to treat me or whatever, because it was so much for a long time.
Crystal Keating:
Oh yeah. And you're trying to take all of this information in mentally and spiritually, but also care for your body. And I know that those with chronic illness often feel, I don't know if you experience this, but like a sense of brain fog and processing isn't always as it could be. And so, there's just a lot going on, which I think you've really expressed the need and the power in partnering with others who can support you spiritually, mentally, and emotionally through the heavy burden of chronic illness.
Well, and I'd love if you could talk a bit about your own journey in working with a counselor and how that really helped you reconnect better with God and others and give you a renewed perspective about the ongoing illness you faced. When you talk about a near-death experience, did you work with a counselor even through that?
Sarah Willoughby:
Eventually, I did. But I wish I had started seeing a counselor far sooner. Maybe as a kid, I was afraid to ask for it. I think I felt like in a lot of ways my illness was a financial and practical burden on my family. And so, I just, I didn't wanna ask for one more thing and none of my family had done counseling before.
Now, many of us have, and it's been super helpful for myself and for my family, because I mean, they experienced a lot of trauma through this whole thing as well, of watching their loved one go through this and going through it themselves. So, I initially was kind of afraid like there was the fear of not wanting to ask for it, for help from a professional counselor.
But there was also just a fear, I think, of not knowing what to expect. Again, like going through all of those doctors, I met some really incredible, amazing doctors. I also met some that whatever the treatment that they did, it harmed my body instead of helping it. Or it wasn't a good experience or interaction or whatever.
And so, I think I was hesitant because I knew I needed help. I just didn't know how to work through all these things and remembering or even not remembering, sometimes knowing that there were things that I didn't remember from what I had been through. But afraid to let someone start pushing buttons or something.
'Cuz, I don't know what I imagined counseling to be. But then I got to see a counselor and it actually, it was a few different people till I found someone we were able to really connect, and it was a good fit. But all of the people that I did meet with or see, they were all super respectful and super gentle and let me have a lot of control over this situation and over the conversation. And so, it was so helpful and so much less scary than I thought it was gonna be even though eventually it was a lot of work.
Crystal Keating:
Well, it takes a level of courage to be vulnerable and you have to sense that you really trust the counselor. 'Cuz just like doctors, like you said, there is kind of a weight of influence as to what they would say. I'm glad that you were cautious and careful in finding the right person and I'm so glad it was helpful for you.
Maybe you could talk about some of the ways too, that going through this experience with chronic illness has strengthened your relationship with God. How have you been impacted spiritually through all of this?
Sarah Willoughby:
It's been a rollercoaster as you can imagine. But I'm glad to say that for me, chronic illness has really strengthened my relationship with God.
And there's a specific reason for this, I think. There were various times where I felt like, where on earth was he and why was he allowing this? And I was scared, or I was angry, or I was just confused and lost and overwhelmed. Points where I wanted to just give up trying to seek him, trying to pursue him. But I think that the biggest thing that helped me in those moments was asking him those questions, was telling him those things, was saying, God, why? And God, where are you and why are you allowing this? And why are you allowing it now, and to me and to my family? And how on earth do I make it through this? And how do I make it through this and still honor you? And God, I'm frustrated, or I'm scared, or I'm really, really sad right now and I don't know what to do.
And I think telling him those things was so powerful in my relationship with God and meant that going through this experience just gave me a wonderful intimacy with him that I don't know that I would've had otherwise, and I am so thankful for. It's easy to think, oh, we shouldn't have these doubts, or we shouldn't ask these questions, or these questions should be shoved down or talked with other people. But like bringing them directly to God means that we're not putting up a barrier. When we ignore the questions, it puts up this wall between us and God. But when we bring them to him, he can meet us in them. And he met me in them.
Crystal Keating:
Right. And you see that throughout the scripture, and yet there's something in us that I've heard over and over again that we have to make a choice to be that truthful with God because it also means admitting it to ourselves. And yet God is the one who can receive that and continue to comfort us, transform us, give us wisdom, be there through the ups and downs and the things that just don't make sense. And I know that your relationship with God has really blossomed in the sense that it's given you such a heart for others who struggle with chronic illness. So why don't you talk about Your Diamonds Conference and how did your online outreach to people with chronic illness begin? And how have you seen God move each year? You've been doing this for a couple of years, right?
Sarah Willoughby:
Yeah, it started from Sarah having questions and not knowing what to do.
So, I asked them of God, but then I started Googling them as any good Gen Z member would do, you know. I didn't find a lot of resources, so I was just looking for like a blog or a book or something from someone who had been there and experienced it.
At that point, I felt like the only chronically ill teenager that there was. And that turned out to not be accurate at all. But at the time I felt like I'm the only one going through this and I wanted to connect with people who understood, because I felt very not understood, maybe by my peers around me.
So yeah, I found blogs and I started my own blog and started sharing about my experiences. It was really important to me that I was balancing reality with hope, not just like all doom and gloom of chronic illness sucks.
Crystal Keating:
Yes, amen.
Sarah Willoughby:
And not just sunshine and daisies of like praying and you'll be fine, because that wasn't the reality of my experience. So, as I started sharing my experience, people started emailing me and saying, hey, this is me too. And all of a sudden, none of us were quite as alone anymore.
So, I wrote a book that's called, He's Making Diamonds, A Teen's Thoughts on Faith Through Chronic Illness. And then after I published it, I was like, well, now what? So, two friends took pity and helped me. And that first event we had like ten speakers, but we started an online conference for Christians with chronic illnesses to balance that hope and that reality. Our goal was to help care for the spiritual, mental, emotional needs of people who were experiencing the same thing. Because those who have chronic illnesses or just long-term health challenges, spend so much time caring for their physical health. But so often it's our spiritual health, our emotional health is neglected and it's just as important to be cared for. So, yeah, so that, that was the beginning of that resource and since then we've had lots of events and Joni actually did two different messages for two of our events which was a huge blessing.
Crystal Keating:
Well, great. So, if our listeners want to maybe participate with a conference or look at your resources, where should they go?
Sarah Willoughby:
Yes. So sgwilloughby.com. I know Willoughby is a hard name.
Crystal Keating:
We can put it in the show notes.
Sarah Willoughby:
There we go. Over there you can find my blog and my book, but also all the Diamonds Conference-related things, 'cuz there are the events, but then there's also just a year-long online forum community kind of thing that we have.
Crystal Keating:
Good. That's often a resource people are looking for when they contact Joni and Friends if there's any online forums or ways where people who maybe aren't able to leave their home as regularly or be in environments that might give them a flare-up.
Well, maybe you could share on that note about your connection with your Christian community, specifically the local church. Are you connected physically or online?
And what have been some of the most helpful means of support and encouragement given to you from the church through the past few years? Like how do you stay connected?
Sarah Willoughby:
Yeah, I mean that's a huge challenge, which is why online stuff can be so valuable ‘cause you can still participate and connect from your bed or from your, your hospital room or wherever you're at. But the in-person connection and a local connection is so powerful and so important as well. I think the biggest things for me that have been helping me in those relationships has been being creative and intentional. And the people, especially around like locally who are willing, have been so helpful for me and such a blessing to me.
You know, willing to say, all right, I will come and sit next to you and watch a movie, instead of okay, let's go out for ice cream or whatever. I think the biggest thing that local community has blessed me with is just remembering that I'm there.
With the lifestyle change of chronic illness, out of sight, out of mind, can be a reality. And when they really intentionally reach out over time and remember that I'm there and ask follow-up questions of like, well, how did that appointment go? Or wait, you mentioned Lyme disease. What is that? From the perspective of someone who has a chronic illness, it can be hard to know how to facilitate those relationships when you're not physically there. And honestly, I don't have a great answer for that.
First, it's hard and I'm sorry, but secondly, be courageous. Be willing to help educate people as you're comfortable with. Be vulnerable with them to ask for help. I hate asking for help, but I know like my local community right now. For example, I can't eat a lot of the things dairy or gluten or whatever it is, right? And so being willing to like communicate my needs, communicate them beforehand, or communicating them one-on-one and letting people know what I need because people want to help and they want to care, especially like my close community, my local church, the people that I trust and that I know love me. But they often just don't know how.
And so being able to communicate with them even though I hate asking for help has been helpful for them and helpful for me.
Crystal Keating:
That's so good. And you know, we often talk about the need and the desire for the church to bridge that gap for people with chronic illness. And you're right, I think a lot of it is not necessarily a lack of will, but it's a lack of understanding.
So, if you're listening today, and you're thinking, well, I maybe not have a chronic illness, but I know people in our church who do, and I know they're maybe isolated. They're not able to participate on a typical Sunday or Saturday night or come to the events. But I really wanna minister better to them.
We have such amazing church training resources on our website to help us in the church welcome and embrace people of all abilities with the love of Christ, even those who are home and who probably long to be connected. You can just go to joniandfriends.org/church to learn more and even sign up with a ministry mentor.
And so, Sarah, I just love your honesty that sometimes there's not a solution that solves it all, but there are creative ways to show love and care and to help people who aren't as connected to stay connected, to be seen, to be valued. And, you know, one of those key components is to actually serve. Right? It's not just being a recipient of care, but it's actually using the spiritual gifts that God's given you to minister to others, even in the midst of chronic pain and chronic illness. Sarah, I'm curious to hear from you. In what ways can those who have chronic conditions love, serve, or encourage others who are in the same boat?
Sarah Willoughby:
Yeah. You're so right about that. It's easy I think, to think that because we might not have the physical abilities or stamina or whatever, predictable schedule that someone else might have, that we aren't able to serve. But I think those who have a chronic illness or some other health challenge we have almost an advantage in some ways, to serving because of the ways that chronic illness gives us understanding, that gives us compassion, especially for those who are in the same boat. I love writing and so when I couldn't leave bed, I could sit with my laptop, and I could write. Or you know, we started the conference. But I know that there's a lot of other people who serve, whether that's inviting someone over to their home because they can't go out or that's mentoring another person over the phone because that's easier.
Or even if that's just allowing someone to come in and be part of your life with you. Accepting help is again, another way to serve, or even to write letters, to write notes, to pray for people. These are all such powerful, such big things. And when we can reach out to people who get it, it's huge. When you can look someone in the eye and say, hey, you're not crazy and you're not alone, I get it. That can be life-changing, and I've seen that happen so many times. No matter like, I've written books. I've written blog posts. I've hosted a lot of these conferences. And the biggest message I feel like no matter what I say, the biggest, most important thing that I can tell someone who has a chronic illness is that they are not alone. And if you are experiencing that, that means you can also with great authority, be able to tell someone they are not alone.
Crystal Keating:
Yes. God is very near to the brokenhearted and to those who are crushed in spirit, and they're not alone spiritually, but also in community. There's others with whom you can link arms with.
Sarah's website again, sgwilloughby.com. Her last name is spelled W I L L O U G H B Y, and it'll be in our show notes. And Sarah, you're the author of, He's Making Diamonds, a Teen's Thoughts on Faith Through Chronic Illness. Thank you so much for joining us on the podcast today.
Sarah Willoughby:
Thank you so much. I really enjoyed getting to be here.