Spiritual Formation in the Midst of Chronic Illness
“Mary, how has having cystic fibrosis affected your relationship with Jesus?” This question from a summer camp nurse sparked Mary Frey’s curiosity years ago. Since then, part of her journey with a chronic illness has been learning how to ask how following Jesus fits into a broken situation.
“The illness that I have does not define me, in the sense that it is not the entirety of who I am, what I am, and my purpose in life,” Mary says. “But it has really shaped me. CF causes me to have more of a reliance on God and not on myself. It causes me to see how He actively redeems brokenness, and look for ways He can use something that doesn’t make sense to us.”
When Mary’s husband, Peter, graduated from seminary several years ago, they expected him to find a traditional pastoral job, in which pastoral ministry would look like “what everyone else did.” During the season when Peter was in a role as a pastor, he felt the tension that comes with being in professional ministry and having someone in his life with chronic illness. “There’s an exceptional amount of guilt that I felt on both sides—not being enough at home and not being enough at church. When the elders of the church would tell me that taking care of Mary was a part of my ministry, it spoke volumes,” he says.
As Mary’s health went downhill, though, the plan had to change. They went through a major shift, learning to view “God’s plan not in spite of CF, but through it.” This eventually led them to what they do now, through their vlog “The Frey Life.” Looking back now, they see God’s handiwork in shaping them for this all along. Their vlog has been an unexpected place of ministry and an opportunity for discipleship, and they have seen people grow in their relationship with Jesus through the relationships built through their daily videos.
One of the key questions Mary has had to wrestle through is related to her sense of purpose. She says a lack of purpose often leads to mental health struggles for many others who live with chronic illness. “Most people find fulfillment in what they do, what they produce, what they accomplish. So, when you strip that down to the point you’re not able to ‘accomplish’ certain tasks and not able to work in the traditional form and not able to prove your worth in traditional ways, you have to get to the place where you actually believe that ‘I am worth something because of Jesus,’” she says. On the hard days, it’s a message she needs to preach back to herself, giving herself grace, just as Christ does each day.
Mary has learned the necessity of shifting the focus of discipleship from “finding fulfillment in productivity to finding faithfulness in our purpose.” This shift emphasizes the here and now, asking “who Jesus is for me today and learning to walk in that.” Mary has seen the benefit of teaching people to learn about themselves, challenge themselves, and ask good questions about their own everyday lives, questions like:
What does it mean to be faithful today?
Who is God calling me to invest in, and how does that look today?
What sacrifice is Jesus calling me to today?
What am I learning about God’s character in the midst of this?
What am I learning about myself?
These questions ground discipleship and spiritual formation in daily life, and keep our sense of calling rooted in embracing the present moment God has given to us, even if it’s a painful one. “Spiritual formation takes place in the midst of a story that’s messy and broken,” Peter says. “We’ve got to embrace that reality in how we approach it, and not run from our story to a program. We need to form people in really looking at what’s in from of them and how Jesus is calling them to those things, those people, those realities. There is a tremendous opportunity for discipleship in your suffering.”
As her own understanding of her unique purpose within the Kingdom has developed, Mary has grown in her conviction that a big part of her calling is to take care of the body that has been given to her. She remembers a time during her freshman year of college when a professor pointedly asked her if she was caring for her body in the midst of all of her other responsibilities. “God entrusted this body to you,” he insisted. Since then, she’s realized “taking care of my body was itself a ministry and what God called me to.” As Peter says, “CF has forced Mary to reevaluate purpose in a much more holistic sense than I do. She has to think about how all of it is wrapped up in taking care of her body. Caring for herself is not a means to an end. It’s part of the end.”
This need to prioritize her health, and the physical limitations that come with living with a chronic illness, bring their own social and relational challenges, even within Christian community. Peter says, “A lot of people from the outside of chronic illness don’t realize how socially isolating it can be. When people don’t get that you can’t show up for something, it becomes very isolating.” Mary says a lack of understanding leads people to respond in ways that have left her feeling misunderstood.
Though there are many stories Peter and Mary could share about ways fellow believers have responded in unhelpful and hurtful ways, they also have stories about being supported by fellow Christ-followers. About a year ago, we were visiting a church, and one of the pastors caught them on the way out. He said, “I just wanted to let you know I’m really glad to see you here. I watched a couple of your videos, and I know it’s hard for you in the mornings. I want to let you know that I know you probably had a rough morning, and it’s really good to see you.” His words and posture have stuck with them. “That was the perfect thing to say,” Mary says. “He acknowledged the work and energy that goes into just showing up.”
One of the major misunderstandings Mary has experienced shows up often in chit-chat, as people greet her asking “How are you?” In those moments, she doesn’t have the appropriate space (nor do they have the appropriate interest) to give an honest answer. “There’s this notion that people want you to feel better,” Peter says, “but the reality is Mary isn’t going to feel better. But this is where Jesus has us, and we’re pressing through it.” Mary longs for the verbiage of chit-chat and greetings to shift. “For me, it’s not just semantics,” she says. “Focus less on how I feel and more on ‘it’s good to see you’ or on other aspects of life.”
They’ve also seen how such greetings betray an underlying belief that if Mary is feeling better, it’s a better or more worthwhile day. “A lot of people have a context for suffering that’s seasonal, but chronic illness isn’t seasonal,” Peter says. “This isn’t just ‘we’re getting through this.’ This is our life. There’s a need within that space in the church and people who really want to enter our story to embrace this reality. This is our story, and it’s probably not changing.”
Over the years, Mary has focused herself on embracing each moment given to her, and training her eyes on God’s faithfulness regardless of the state of her health each day. “When I started doing better on the miracle medicine I started taking fourteen months ago, people said, ‘Praise the Lord! God is good’” she remembers. “And I say, ‘Yes, He is, and He was just as good when I was being evaluated for a lung transplant and looking at the end stage CF situation. And He was just as faithful and He was just as present and He was just as at work then as He is now.’”
For Peter and Mary, the journey with cystic fibrosis has been a key element of their spiritual formation. It has been a journey of understanding hope as not merely something for the future, but a “very present reality in the mundane of life and the hardship of suffering.” Peter says, “The brokenness we experience in this world is not an exception. It is part of Jesus’ redeeming work. Our natural tendency in life is to push against that, to view hope in spite of brokenness. But we have hope in the midst of it.”
This article is part of our ongoing series, Through the Valley: Real Conversations About Following Jesus When the Road Gets Hard, in which we're talking about discipleship in the parts of life that are difficult, complicated, or sometimes controversial.