If I tried explaining these symptoms to myself before all this started, the former me would have been confused and most likely skeptical. That’s the most difficult part of living with a chronic illness. Unless you’ve walked the road, it’s nearly impossible to understand.
For 29 years, I was mostly healthy. I had aches and pains, pulled muscles and the like. I had to push through low-energy days. Occasional colds? Of course. But I more or less continued with life.
Something changed, however, at the beginning of 2014.
I don’t know what. Neither do the dozen or so doctors and specialists I’ve seen. Everyone agrees something’s wrong. But no one can find a name for it.
Here’s what I know. The past three-and-a-half years have easily been the most difficult of my life. There’s not a close second, that includes a bout with cancer at 25. I have no way of knowing who I will be from one day to the next. I’ve tried everything short of living in a bubble. Some days, extreme fatigue gets me, the kind that makes holding your eyes open a near impossibility. Other days, nausea gets me. Still other days, body aches, the kind you might have after running a marathon, except I stopped running when all this started.
Then you have the psychological pain of battling symptoms that come and go without rhyme or reason.
And most cruel of all? Every now and then, this unicorn disease takes a day off. I catch glimpses of who I was before this started. It might even take a few days off. Just long enough for a seed of hope to take root.
Maybe, possibly the nameless unicorn croaked over? About that time, Boom! He’s back like he left something.
No assembly of words can describe how completely this chronic illness has affected my life. My body’s tired. It longs for relief. I hear its cries. I cry with it sometimes. I used to force my body to keep moving, angrily ignoring its groans.
Then I realized my body didn’t ask for this. We live in a broken world. Everyone’s body breaks down at some point. I’m 31. Supposedly I’m in the prime of my life. But I’m not entitled to health. No one is. Sometimes the body suffers the effects of brokenness much earlier than it should.
I’ve never openly talked about my struggles the past few years. I don’t know why. Maybe I was embarrassed. No, I was definitely embarrassed. Having played sports from birth, I was bred to push through the pain. Only losers give up when things get tough. I won more times than lost under this logic. Until 2014, that is. Since chronic illness showed itself, I’ve lost many more times than won.
Another factor influencing my silence? The red, white and blue banner. In America, progress is the name of the game. It’s the only game in town, really. We reward the most skilled players. The most productive, efficient, accomplished people have the greatest value. I know this because I played the game well most of my life. Then, chronic illness happened. As my health declined, so did my ability to play the game. No longer did I have the mental or physical capacity to climb the ladder. And as I fell, so did my value and my identity.
Most people don’t understand that America’s game relies heavily on variables beyond their control. Talent, hard work, charisma, connections have must less to do with winning the game than say, health.
So, why bring up my struggle now? I’ve feared being misunderstood or labeled weak or lazy or whatever. But I’ve come to realize that with risk also comes reward, in equal, and opposite proportion. So, I realize some of you won’t get it. Some might even say I’m lazy. But I also some people need these words.
That’s why I bring this up, to give people hope. Maybe my struggle will help someone in a similar struggle. It could be physical or mental or whatever. I want to encourage those who feel alone and isolated. No one understands what you’re going through. Well, I do. I get it. “Where are you?” is often all you can muster up in prayer. You’ve thought about giving up. The stars have aligned against you. And they shine brightly in the ever-present darkness.
I see the stars too. Can I keep it real? Many days suck quite royally. But if I’m keeping it real, I must also say I’ve learned much about God and faith and world. Your pain is not in vain. That’s what I want you to know.
It’s not easy, but you can find joy and peace and hope in the storm. Here a few important I’ve learned.
Keep showing up.
You don’t have much to bring to the table right now. And that’s okay. Sometimes just showing up requires extraordinary faith. You could find a score of reasons to give up, but you mustn’t. In the wilderness, showing up is an act of worship, a step of obedience towards God and a firm no in the face of the enemy’s lies.
Resist nostalgia and shortcuts.
In the wilderness, your faith is being tested, primarily in two ways. First, nostalgia, or living in the past. On numerous occasions, I was tempted to spend my days remembering who I was before all this began. This is toxic, mostly because God doesn’t live in the past, and you will therefore not find life there. Momentary satisfaction, maybe. But no long-term peace or joy or hope. Usually just bitterness and depression and resentment.
Remember the Israelites? What happened when they started complaining, asking Moses to take them back to Egypt? Right, bad stuff. You must fight against this temptation to live in the past. The past can never be recreated or returned to. And you shouldn’t want this, not if you trust God, not if you believe he is good and in control and leading you towards greater degrees of freedom.
The second temptation? To manufacture your way out. To devise your own way of removing the pain or resolving the situation. I must remind you that temptation itself is not a sin. Everyone is faced with this desire in times of great difficulty.
Even Jesus, before he was crucified, prayed that God would remove the cup of crucifixion from him. He begged God to find another way. Here’s what Jesus didn’t do. He didn’t remove the cup himself. He wanted the pain removed, but if the cross was the only way, then the cross he would endure.
In today’s world, there are a million ways to manufacture your way out of pain. Alcohol, drugs, illegal meds, sex, pornography. These never lead to life. Instead, we must seek God
Be honest with God.
I’m always taken back by the honesty of folks in Scripture. As Jesus endured the cross, he said, “God, why have you left me?” The Psalms are filled with brutally honest verses about God’s absence. Then you have Job.
The point here? God isn’t some angry old man waiting to bash you with his holy cane when you express honest emotions.
In fact, I think the opposite is true. God wants you to be honest. I’ll keep it real. Some days really suck. Like really. At times I’m angry with God about my symptoms. And that’s okay, I believe. That’s part of what it means to be human. Difficult times are opportunities to be more human, more whole. Must you be careful not to allow your anger to become sin? Of course. But suppressing emotions because they’re negative doesn’t make you a better Christian. It makes you less human, less holy and less receptive to growth.
Hope might be the most important tool in the Christian arsenal. Hope is not circumstantial. It is a firm conviction, a way of seeing the world. Hope is what sustains us through difficult times. We believe God is in control, regardless of what our circumstances might lead us to believe. We trust suffering is temporary and that God will use even the worst of situations for good. Evil might have the first word (cancer, chronic illness, divorce), but we proclaim boldly that God will have the last.
Many times in the last three-and-a-half years, I’ve found encouragement in 2 Corinthians 12. In verses 8 and 9, Paul talks about his thorn in the flesh that tormented his flesh. He prayed multiple times for God to remove it. Here was God’s response:
“My grace is all you need. My power works best in weakness.”
I may regain my strength and energy. I may not. Either way, God’s grace is sufficient. It’s enough for me. It’s enough for you too.
Grace and peace, friends.
Frank is lead writer and editor for the blog at Bayside church. He is also a husband, father and Jesus-follower. Occasionally he plays golf. Often he drinks coffee.