FINDING JOY IN CHRONIC ILLNESS
Pamela Piquette and Cindee Snider Re never imagined what purpose God had for a friendship that started in the least likely way. They were initially brought together through their boys who couldn’t get along. Through those encounters, Pamela and Cindee started building a friendship. They were two moms each living normal lives until Cindee received a diagnosis no woman wants to hear: breast cancer. Reeling from the news, she walked into church desperately looking for her Bible study friends who were not around, but there sitting in a chair by herself was Pamela. Cindee plopped down and began unloading her diagnosis and pain. Pamela compassionately listened. In fact, Pamela continued to listen to her friend for years as Cindee’s life was hit with diagnosis after diagnosis. She and eventually four of her five children are battling chronic illness (Ehlers-Danlos and a myriad of co-existing conditions; one child is now in palliative care.). It was unusual for a healthy person like Pamela to invest so much into a friend who had long-term chronic health issues, but Pamela was there, ever-present by Cindee’s side. Actually, Pamela couldn’t stay away. She was inspired by Cindee’s faith in the midst of what looked like an impossible situation, and she wanted to be with Cindee because she wanted what Cindee had—but she silently told God not that way. Then the unthinkable happened. Almost unbelievably, after walking alongside Cindee for years, Pamela and her daughter were diagnosed with the same genetic connective tissue disorder that Cindee and four of her kids have (Ehlers-Danlos) and chronic migraines, fibromyalgia, and dysautonomia. Now Pamela was part of the chronically ill club that she never wanted to be a part of, but that she had become so familiar with because of her friendship with Cindee. It’s as if God somehow prepared Pamela through watching Cindee.
Now Cindee and Pamela became open to a whole world of invisible people struggling with chronic illness: nearly one in two people to be exact—approximately 140 million people in the US alone. Their hearts began to break for those like themselves who were walking alone and isolated and invisible from the lives they once knew. One night, God spoke to Pamela very dramatically as she awoke with a specific vision from God. Pamela immediately called Cindee. “I simply said ‘We’re supposed to start a ministry.’ … not even a hello … and remarkably she said ‘I KNOW.’” So in January of 2016, Cindee and Pamela started Chronic Joy, a ministry for those with chronic illness—the ministry God told them to start. Neither had ever done anything like this before and they often wondered how they would do it with all their physical challenges. Miraculously, small step by small step, they started and God began to put the ministry together. Today, the ministry has a website (chronic-joy.org), a plan for a four-book Bible study series with the first book Discovering Hope currently available on Amazon and Finding Purpose in production (to be released this summer) with the other two (Embracing Worth and Encountering Joy) to follow. The books help sufferers find hope, purpose, worth, and joy—all things needed to live well with chronic illness. Chronic Joy posts daily across social media, and the website is full of resources for the chronically ill to find hope, community, and a place where they are not invisible.
The commonality that deeply unites Pamela and Cindee is not their chronic illness, but the shared hope in Christ, which brings purpose and joy to their most challenging days. They have battled despair and hopelessness and understand the complexity, exhaustion and pain of chronic illness — but they have experienced deep joy too.
God has used Cindee and Pamela’s personal brokenness as a catalyst for helping others. “You can’t help but look at all we’ve gone through personally and ask, ‘What do I do with this? Lord, I know you want me to feel broken for what you are broken for, but there are so many people with chronic illness.’ Together, we will impact the world one precious life at a time. Every time we turn around there is one and one and one. And they break our hearts, every one of them.” This is at the heart of why Cindee and Pamela have stepped out in faith to minister to this often-forgotten population of hurting people that God so deeply loves, but hasn’t forgotten.
JBU recently had the privilege of sitting down with Cindee and Pamela to hear their story and the incredible ministry of hope and joy they have started for the chronically ill.
JBU: Tell us about your friendship.
Cindee: When my family was hit with illness, it became completely consuming. Pamela met with me every week and has walked alongside me for almost a decade now. She’s listened long and often as I’ve wrestled with a life I didn’t choose and didn’t want, a road that’s often seemed completely overwhelming, but has also taught me so much about hope. In the space of a couple of years, it was not only my son, Sam, who was sick, but also all three of my girls and me. Pam continued to listen and to try to understand—and that was powerful.
Pamela: There was no piece of Cindee’s life that didn’t revolve around a doctor’s appointment, a sick child, an emotional meltdown, etc. I could pray for her family, but I was frustrated many times because there was nothing more I could do. However, I couldn’t stay away because when you walk that close to Jesus you can’t help but want to be near those kinds of people. The longer we hung out together, the more I saw Jesus. And I saw grace upon grace upon grace—and it was captivating.
JBU: How do you define chronic illness?
Cindee: Medically, it’s considered to be any illness that lasts three months or longer. Typically, when people think of chronic illness, they think of things like diabetes, heart disease, arthritis—things that are long-term. Chronic illness is anything that is significant, long-term, and life-changing, and it includes both physical and mental illness.
Pamela: We have included the definition to be “If you think you have something that is a chronic illness where your life has changed, then you belong in our camp.”
JBU: What can people do to walk alongside the chronically ill?
Cindee: It’s sometimes hard to answer people’s question, “How can I help?” I have no idea most of the time. There aren’t always things others can do. Making a meal for my family is almost impossible, because there are so many things we can’t eat. At one point, Pamela showed up at the hospital just to make sure I had lunch. It really is all about presence. It’s like Job’s friends in so many ways; it can’t be solved, but we can sit together in the ash. Presence stems the loneliness and isolation that are such huge components of chronic illness.
Pamela: You are walking in survival mode. What you really just need is a presence—a text, a Facebook message, a card in the mail that says, “I’m praying for you.” That’s enough. Sometimes that’s so much more than enough.
Cindee: — and something that doesn’t require an immediate response. A phone call is sometimes too difficult. It’s hard to explain what I’m going through, or I just don’t have the energy for a conversation.
JBU: How was Cindee there for you, Pamela, when you got into the place you’d hope you’d never be in?
Pamela: I had C. diff for three months. I don’t think Cindee missed a day calling me when I was recovering. She came to see me and just listened. She already knew that there was nothing to be done. She understood that for the first time in my life, I felt such utter isolation because I was sick and I had never experienced such physical pain before.
JBU: How do you personally find hope in the middle of your daily struggles?
Cindee: Hope is the foundation of this ministry. We looked at my 22 year-old son, Sam, who spiraled into hopelessness, and thought, “We don’t want others to get to this point. There has to be something different.” I knew there was, because I’ve already walked through it. Some of the richest moments I’ve ever experienced have been in the midst of this hard place of illness: the conversations that take place when we’re so far at the end of ourselves that we speak vulnerably and honestly. I wouldn’t have chosen them, but I wouldn’t have wanted to miss them either. It’s the nights I drove to campus at 3 a.m. to pick up my son because he was too sick to stay. It’s watching my daughters get PICC lines for infusions of DHE and my 18-year-old finally getting a permanent medical port, because she has no more useable veins—these experiences we go through together can be very rich. I have a relationship with my kids I might never have had without illness. In our fast-paced world, we can miss that. In the midst of chronic illness, we have to slow down because we don’t have a choice and it allows us to experience a depth with each other we might otherwise miss.
Pamela: There are moments when hope is hard. There’s no getting around that reality, but having faith means that God is enough and I trust in Jesus, my hope. That also gives me a deeper sense that there’s purpose in what’s happening to me. I may not always understand what that purpose is, but sometimes the glimmer comes from an action, a word, or someone that I can touch.
JBU: How does this ministry encourage people that they are not alone?
Cindee: We’re working on building a sense of community. If I share my story, it may be different from yours, but there are elements that are similar. I had an experience not long ago where I connected with someone I didn’t know. She sent a message that said, “I read your book at 30,000 feet. I got chills and ultimately was in tears.” She said it wasn’t that our stories lined up, because our illnesses are different, but that our journeys toward hope were so similar. It’s our willingness to do what the disciples did as witnesses. They shared their stories and changed the world. It’s our common experience that reminds us we’re not alone.
JBU: How do people with chronic illness find purpose?
Pamela: There are so many things within the church that people with chronic illness can’t do and just don’t fit into. It’s a matter of finding a new definition of purpose. So let’s figure out how we fit in with our limitations. Cindee began a card-writing ministry. It became a vital part of her life — and to those who received them. She also has used social media to encourage people going through hard things. That’s part of the out-of-the box thinking, and that’s really the whole point of Chronic Joy, shifting the paradigm.
JBU: Why is lament such an important part in processing chronic illness?
Cindee: After you’ve been sick for a while, people can start to look at you as a whiner, a complainer, as someone without joy and hope. They sometimes question how much of this is just in your head. What I’ve watched my kids walk through is heartbreaking. They’re not just fighting illness; they’re fighting a cultural norm. Many of the people around them have no context to understand chronic illness. In the middle of that battle, I realized that they needed lament –to be able to speak their pain whether the words are pleasant to listen to or not. They needed to be angry. They needed to be sad. They needed to understand that this is a grief process. They are letting go of what they expected for their futures and having to rediscover the purpose of their lives. All those struggling with chronic illness have to learn who they are in the midst of illness and what their lives look like moving forward. It can be good in this place, but it will look different and that’s why lament is so important. We can’t shorten that step. We need to offer people permission to process and grieve their losses in order to come out on the other side so they don’t become bitter, angry, cynical, and hopeless.
JBU: Can you define lament?
Cindee: The Psalms are filled with lament. It’s “the breadth and depth of human experience in emotion.” It is absolute grief, deep sadness, anger—it’s frustration. There is an element of hopelessness and asking, “Why? How long O Lord?” However, the Psalms never leave us there. That’s the beauty of lament. When we walk through the valley of absolute desolation, we’ll come out on the other side, and that’s where we find joy again.
JBU: How do you find an identity outside illness?
Cindee: That’s part of lament, part of walking through grief. This might be the best it ever gets, but in this place, life can still be good. When I look at my 22-year-old son, I realize God has given him everything he needs to be in this hard place. He’s gifted my son in ways that allow him to be creative, to have purpose right where he is. It’s also learning to celebrate the little things. That’s how we remember we have worth, that we matter, that we are infinitely valuable to God.
JBU: How has God comforted you through your brokenness?
Pamela: When I was hospitalized with C. diff, I rehearsed the 23rd Psalm. It was almost as if it was rhythmic to the IV pump. When I heard it, I rehearsed it over and over again. On one particular night, I awoke because I needed my sheets changed. A woman who I had never seen before showed up and helped me. She took my clothes and washed them. She wasn’t a nurse. I never saw her again. It was one of those God moments. Angels unaware. My clothes just showed up clean.
God also used the first chapter of Joshua. He reminds Joshua to be strong and courageous and not be afraid. God was gracious enough to tell him five times, in the very early part of that chapter, that He’ll “never leave you or forsake you”. I hang onto the promises in God’s Word as He addresses my very real fears. I don’t know how I’ll feel tomorrow, but I can trust that He is with me.
Cindee: The only way I can manage life is to be present in every moment because, so many times, I can’t even look five minutes ahead. I started looking for small moments early on and I’ve been able to find beauty and comfort even when it’s hard, things like a song on the radio at the right time or five minutes to read when it’s quiet and still. I’ve picked up my camera and found beautiful things in hospital rooms, evidence of God’s presence everywhere. It’s as if He put things there just to make me smile, and those small moments are enough—more than enough.
JBU: What hope would you give to those struggling?
Cindee: No matter how dark the days, no matter how fierce the storm, no matter how deep the valley, there is hope. There is always hope. You are not alone. You are not invisible to God. You’re created in His image. He loves you beyond measure and has a plan for your life. It’s not going to look like what you thought it would, but it can still be amazing.
Pamela: Close your eyes for a minute and in the quiet listen for His whisper, “You are My Beloved.” Hang onto that because it’s enough.
First published in Just Between Us magazine, summer 2017. Published with permission.
Editor of Just Between Us magazine
Shelly has been the editor of Just Between Us for more than 30 years. Additionally, she has been involved with leading and nurturing women since attending college. She and her husband have four adult daughters and two sons-in-law. They live in Menomonee Falls, Wisconsin.