How I’m Experiencing Christ Through Chronic Illness

[Editor’s Note: On April 23 we hosted a Christ Talks event in State College, PA, where 10 speakers shared their insights on the person of Christ from their unique perspectives. In his Christ Talk, Steve Lutz shares how he’s experiencing Jesus through living with his wife’s chronic illness. You can watch the video or read the blog , which is based on the video of his Christ Talk.]

My wife Jess was afflicted with chronic illness at 19 years of age. People with chronic illness live with the constant awareness of their affliction in their bones, in their pounding head, in their aching joints every day.

Jess’s affliction morphed from mono, into a relapse of mono, into vague symptoms that wouldn’t go away, but eventually were labelled as “chronic fatigue syndrome, fibromyalgia, myalgic encephalomyopathy.”

But the effects were real, and for her, often debilitating. Jess went from being an athletic, extremely active, driven, super-achieving woman to being sick—deeply sick. This former gymnast now found it hard to walk around the block. This valedictorian now found it challenging to read an entire book. This person who loves people now found it exhausting to be around them.

Not all of the time, but for so much of the time, “The Illness” (as we’ve come to refer to it) has at times dominated our thoughts, prayers, and virtually every decision we make. This fall will mark 20 years since Jess was afflicted—more than half her life. And in those two decades there has not been a day that goes by that we don’t have to factor The Illness into our plans.

One of the burdens of chronic illness—especially ones without a clear diagnosis—is the lack of understanding. People think she looks fine, so she must be fine. She’s not. People think she’s depressed. She’s not—but who would blame her if she were? They say stupid things like, “It must be nice to get to sleep all the time.” It’s not. It sucks. I get defensive.

The lack of understanding, both medical and personal, means that chronic illness is like being sentenced to a purgatory—a half-life of not knowing, not improving, and not knowing if or when it will ever change.

The cloud of uncertainty and misunderstanding of chronic illness extract a heavy cost over the years. But there are other costs as well:

• Friendships have suffered due to lack of ability to maintain them. The invitations tend to dry up. Only friendships with those who are willing to hang in there with you for the long haul last.
• My career suffered. When it became clear that living in Philadelphia was a factor that made Jess sicker, I left a promising pastoral position with a new and thriving church to essentially start over from scratch in an entry-level position.
• There has been a significant cost of money, time, and energy spent on just trying to get better, or maintain the current level of “functioning.”
• And quite literally, The Illness has taken hours, days, weeks, even YEARS off Jess’s life. We estimate that over the past 20 years she has spent an EXTRA 2.5 years asleep beyond that of a normal, healthy person. And the rest of the time, she’s usually not feeling well.

I’ve given you a picture of what it’s been like mostly for Jess. But there’s also my experience—how I, as the spouse, have suffered too, and how Christ has met me in it.

I’ve often felt invisible. I’ve gone to bed and woken up in the dark countless times, keeping  the lights off because Jess is sleeping. As I stumble around the darkened room, trying to match my socks, it feels like no one sees me.

I’ve often felt helpless and hopeless. As a spouse, I am powerless to heal her. Yes, it’s true—men want to fix things. And when I see the person on earth I love more than all others suffering, and I’m unable to do anything to improve it, that’s a deeply frustrating loss of agency. It has often felt like a titanic obstacle in the way of my desire for achievement and significance and strength.

When you’re suffering, people typically give you character-building advice:

• Pain is God’s megaphone to get our attention, as C. S. Lewis said
• Suffering is a crucible to reveal and purge me from my idols
• It helps me identify and empathize with others in their pain

That’s all true as far as it goes, but if that’s all, it can easily become utilitarian—pain and suffering only as the instrumental benefit for the greater good.

But I have found that is not all Christ has for me in this! I have come to see The Illness as a sovereignly orchestrated opportunity to not only grow in character, but also to see more of Christ himself—to draw near to him, and be transformed by the vision of who Christ is right now.

Perseverance leads to character, but it also leads to hope, and that hope does not disappoint because it is in Jesus Christ! I have found that to be true as Jesus has met me in three ways.

The first is the desire to be seen, to be known, to be understood.

The chronically ill—and spouses and caregivers—often feel invisible. Oh, for the urgency of a crisis and the outpouring of concern and help and love it brings! But it’s not a crisis. It’s every day. People don’t know.

But Jesus knows. We usually don’t think of Jesus this way, but he knew chronic suffering. Sin was like a chronic condition that clung to him, though he himself is sinless.

Maybe he wasn’t chronically ill physically, but Jesus’ entire life on earth was painful. As a sinless man living in a sinful world he would have carried a constant sense of wrong and alienation for 33 years—like nails on a chalkboard.

And so he was a Man of Sorrows, and familiar with grief, so much so that it disfigured him—so painful that he needed to get away at night just to unload all of it in prayer.

The author of Hebrews tells us “During the days of Jesus’ life on earth, he offered up prayers and petitions with fervent cries and tears to the one who could save him from death, and he was heard because of his reverent submission . . .” (Hebrews 5:7-9).

Like it is for the chronically ill, the source of Christ’s pain was invisible to others. But to those familiar with chronic suffering, this is comforting:

Jesus understands me and knows me. He sees me. And this knowledge meets me in a second way.

In my desire for significance, for greatness, where The Illness feels like it makes me insignificant and hindered, Christ redefines significance. In the crucible of chronic illness, I have gotten to know him in a deeper way, and experienced a special kind of fellowship with him.

When Paul—another sufferer of chronic illness, with his thorn in the flesh that God would not remove—cries out, “I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death . . .” (Phil. 3:10-11), the chronically ill Christian nods his head in sober recognition, but also in fellowship, because he knows of what Paul speaks. He too has known those anguished nights of pain and prayer. And because of that he knows a certain kind of fellowship with Christ in his suffering and his surrender.  What greater significance could I want than that?!

This brings me to my third connection with Christ.

I desire to be strong, but living under this burden for 20 years, I see how weak and powerless I am. But Jesus triumphed over suffering and evil, not by human effort, but by surrender, by trust, by loving submission, by prayer—all to his heavenly Father. And through him, we do the same. When I am weak, then I am strong!

Let me close by sharing several things the journey of dealing with chronic illness has shown me about Jesus:

• I am reminded that the sufferers are not worthless or useless because they contribute less to the bottom line. Instead, Jesus has dignified their suffering with his own, and offers them all the worth and identity they could ever need through adoption into his family. They are not defined by their suffering, but by Christ, and through him they transcend their suffering.
• The weight of our suffering also gives us a clearer view of the cost of our redemption, and what Jesus willingly went through on our behalf.
• The chronically ill who walk with Jesus invariably possess a greater longing for heaven, and therefore keep us honest about what matters here and now. Because the world holds so much less promise for them, they set their hearts on things above, which allows them to focus now on the things that last forever—namely, loving Christ and others.
• This other-worldliness mindset makes signposts for our entire culture, showing us that we can’t afford to ignore our wounds, our brokenness, our limits, or our need for rest—and ultimately points to the hope and healing we can find only in Jesus Christ.
• The chronically ill also lead us to a countercultural and biblical understanding of the Sabbath and rest. The weary and broken remind us that our God is the only god who gives rest. Jesus treasures our rest because it reveals our fundamental dependence on him and his sufficiency, his glory, and his undeserved grace. Our weakness becomes the occasion for him to reveal more of his strength!

I have often told people these words I don’t think I could have fathomed nearly 20 years ago:

I wouldn’t want to go through all this suffering again, but I’m glad in his sovereign foreknowledge and grace the Lord took me through it, for not only what it has taught me, but who it has shown me—namely, the Risen Christ, who continues to reign and rule in all goodness and power. May he be praised!

About the Author: Steve Lutz

Steve Lutz is a pastor with Calvary Church in State College, PA, and is the author of King of the Campus (2013) and College Ministry in a Post-Christian Culture (2011). Steve frequently speaks and writes on college ministry and related issues, and consults with college ministries across the country. You can follow Steve on his blog or Twitter.