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.

  1. david bryant 6 years ago

    Steve: This is so wonderful! So powerful! I wish the whole Body of Christ would come to this blog today–both to read it and to view it. To view it in order to catch your heart in ways words could never give us (even though your words are to clearly Christ-exalting!). Thank you for working with Chris to pull off the Christ Talks event. Thank you for giving of yourself and being so vulnerable as you speak of your pilgrimage with Jess. Even though we have basically a long-distance relationship, Steve, you have become very dear to me (as you are, for sure, to Chris) and I am so glad the Holy Spirit brought you into my life as well as into the mix of Please tell Jess that I still believe here testimony video (which is placed as #1 in the order) is the most powerful video testimony we offer. Anytime I watch it the tears flow all over again — tears not of pity but of joy, and of longing that my own heart might move into the depth of her relationship with our Lord Jesus.

    • Stephen Lutz 6 years ago

      Thank you for these words of encouragement and affirmation. You have been a great blessing to me from afar and through your work. It’s an honor to be associated with this work. I deeply appreciate all you’re doing to elevate the person and work of Christ!

  2. Laurie 6 years ago

    Steve I haven’t been diagnosed but I believe that is what I’m dealing with. It is extremely hard. Thank you for being open and honest. The relationships are so hard. I’ve struggled with this so much and until I read your post I had no idea no one else did. Prayers to your family.

  3. Jenn 6 years ago

    Thank you. As someone who has lived with chronic illness for many years, it feels great to be validated. I pray and pray for the Lord to remove this thorn in my flesh. He gets me through somehow. Only my family and a very few trusted friends know the extent of what I go through. It’s difficult to make plans. It’s embarrassing when visiting friends or relatives and I have to have breaks. I’m humbled that my mother still has to take care of me and drive me places that I don’t have the energy to do myself. I’m not sure my husband even believes me. He thinks if I got more sun or exercise or protein I’d feel better. I wish it were that simple. Believe me I’ve tried. Try too much and it’s one step forward and ten steps back to bed. I too was full of life and have an education. I used to have a quick mind that remembered everything. I could push my body and make it do what I wanted. This isn’t at all where I pictured myself. I thought I would have it all; kids, career, creative outlets. My kids do keep me going. It’s hard to deal with the guilt of limping along financially with only one income. I pursued ssi and actually won my case! It was a humiliating experience that I hoped would pay off. Although I won in court, my husband’s income was too much and I didn’t receive any financial benefit, only a label. We’ve gone bankrupt, lost our car, home and business. I wonder if things would have been different had I been well…
    No sense in looking back. I’ve learned through this experience that God is my strength and provider and champion. He gets me through. He gives me a smile to wear regardless of the circumstance. Sometimes I even get His Grace to do things I normally can’t do. I am thankful. I am grateful.

  4. P 6 years ago

    Steve, thanks for this. I could have given this speech almost word for word. I’m 59 and my wife is 57. She’s had basically what your wife has for 8 years now. She’s had the diagnosis your wife has had, plus one other, “migraine associated vertigo”. In addition to the pain, my wife falls over regularly. We have to have someone at home all the time. She is able to be up and moving around the house maybe 10 hours a week total. The rest of the time she is in bed or her chair in the family room. Thankfully we have 5 of our 7 children still at home, and they help out a lot.

    I’m in the ministry too, however, I travel overseas about 5 months of the year. I’m always either recovering or getting ready for an overseas project. My wife has given everything she can to our ministry together, but she is unable to travel anywhere. She puts in time at the office each week, some of those 10 hours. She does all that she can and sometimes more than she should.

    There are other a whole host of issues that are real that are not mentioned, but through it all I love my wife and I love Jesus and as He keeps me in Him we will persevere toward glory.

  5. Camille Carswell 6 years ago

    I have the same illness as your wife. Mono hit me 16 years ago and I never recovered. I grieve the loss of a church piano job I had during high functioning days, and feel so badly for my husband who has the financial burden alone. Trying to go to church takes away my ability to care for myself. I love Jesus and try to share His love with others in my patient group… Give your wife a hug from me.

  6. Nancy 6 years ago

    I too have this dreaded illness along with a couple others illnesses.

    I too left my church job after 17 years…. Broke my heart to leave it, and at the same time relief and rest and healthier pacing were to be had. Along the way, i married, my married children began gifting grandbabies and life is very different than I ever thought.

    Wonderful in so many ways, with that underlying struggle every night and day. A couple friends continue to stay in contact, even as I say”no, I can’t go” way more than I say”yes , let’s!”. It’s wonderful to be asked!. Especially when the asker is ok with alk the”nos”

    My husband deserves this article. Thank you. I don’t think he’s ever read anything about his side of this coin, and he makes so much possible for me.

    Thank you

  7. Chatty 6 years ago

    There is a product at the health food store which helps this illness called Cure Med..also I take Gamma Globulin shots to boost my immune and I now have no joint pains..I too looked perfectly normal..this is an invisible disease we have to address everyday, while those looking for a n would never understand what we do..I am now totally pain free and very very active at age 66…if you get a chronic fatigue panel done you will see when it started..
    I had it even as a small child, this viral issue..was always sick, always had swollen glands..etc..but didn’t go full blown till I worked in chemicals for a few years..this is fixable.u also shouldn’t eat anything with the amino acid arginine in it..this flares the clinical nutritionist taught me that…also a product called Laracidin, from coconut..very strong, natural and kills the virus..also nutritionist all works,,hope this helps..

  8. Julie belliveau 6 years ago

    Have you tried removing gluten from her diet? It causes all of the symptoms you listed above and more. For a full list see, i don’t have celiac disease, a gluten intolerance or sensitivity or allergy according to all the tests but two weeks without gluten and I knew that was the problem. I can now awake to an alarm, my blood pressure returned to normal, the tachycardia is no more, the sound of blood rushing in my ears is gone, no more bloating, the brain fog and joint and muscle aches are gone. I can now stand for long periods without feeling as if I would pass out. I suffered with a tired achy feeling for the first 49 years of my life. I finally feel normal since eliminating it last July. It is worth a try.

  9. Brenda Elliott 5 years ago

    Thank you for sharing this eye-opening with all to read. I’ve suffered with CFS for 14 years and have been married to a wonderful man for six years who cares greatly for me. You see, he was suffering from loneliness after an ugly divorce. He married me knowing how our lives would be limited greatly. God brought us together and is at the center of our marriage. I am anxious to share this with him so he will know, additionally, he much I recognize his great devotion. I walk with Jesus daily, I speak to God throughout my day. I dealt with cancer the years ago. I just had to have all of my upper teeth pulled to get dentures after my teeth fell apart from being dry, on meds for so many years. This was just a few weeks ago so I am still dealing with the aftereffects of oral surgical trauma and will for months. Yet, we now live full time in our new fifth wheel. We spent summer beautiful Oregon and leave next week for AZ for the winter. God is my best friend, my hourly faith and hope. I know I will be caught up in the air with my sweet Jesus very soon. Thank you for your wonderful words and for your understanding. ..from a fellow CFSer. Best regards to your precious wife. Sincerely, Brenda Elliott

  10. mike 5 years ago

    We are all called. Sometimes it is a good and fun calling and sometimes it is hard, sad, frustrating. and hurting. It is at there times we are most Christ like. It’s not about me but about the Glory of god we like to call this faith. I will never understand why my wife has to lived 50 years plus with a Chronic progressive disability. it is not for me to understand it is for me to love and be loved in ways I can’t even comprehend. Because of my relationship with my wife God has given me love i will never deserve, but gladly receive. THIS IS GOD LOVE! This is what I see in my Wife and myself and others suffering with chronic pain. Thank you Father for a love I will never be able to comprehend

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