5 Things I Learned From Living With an Incurable Illness

Apr 10, 2017 |Joshua Rogers
man on rock looking at sunset

What I wish someone had told me when I found out I was sick and couldn't do anything to fix it.

Seven years ago, I was having a conversation at a birthday party when I suddenly felt like I was in a dream. My voice felt far off, the room looked two-dimensional, and I couldn't get my eyes to focus. Fifteen seconds later it stopped, but that episode was only the beginning.

I started having a variety of other bizarre experiences. Sometimes it seemed like I was watching a scratched DVD — other times I would lose my words mid-sentence or forget how to type.

My doctor eventually diagnosed me with epilepsy, a disorder that's caused by abnormal electrical activity in the brain. It's an illness people rarely recover from, and if you don't take medication, the symptoms only worsen. It can be hard to find the right drug to treat the illness; in my case, I ended up having to change medications five times over seven years, which was incredibly disruptive.

My medication changes resulted in a persistent and embarrassing slew of side effects, which at different times included foggy thinking, dizziness, irritability, forgetfulness, and exaggerated feelings of sadness. They were a reminder that although I could treat epilepsy, I couldn't get my life back. Abnormal was the new normal.

Nobody prepared me for the process of learning to live with a long-term illness. In fact, when the doctor gave me the diagnosis, he basically just announced it and then left my hospital room. I didn't feel sad when he left though — I felt numb. But the numbness eventually wore off, leaving me to sort through the feeling that my body was damaged goods.

If I could go back and be the one who delivered the news, I would've offered some compassion or at least said, "I'm sorry you're going to have to go through this." And if I'd known then what I know now, I would've shared the following basic truths.

This diagnosis does not define you.

You are bigger than this diagnosis. It may be hard for you to believe that right now. The symptoms of your illness are going to be with you every day, tempting you to accept that chronic illness is now central to who you are. Don't believe it.

You are more than the sum of your symptoms. This illness is just a plot twist in your story — a story about an overcomer who's going to look sickness in the eye and say, "You may slow me down, but you will not suck the joy out of me."

That doesn't mean you need to pretend everything's OK with your body. It means that in order to keep sickness from being a central part of your identity, you've got to believe God has a purpose for you that transcends your circumstances.

Your sacred, untouchable purpose will require you to keep using your gifts to love Him and the people He places around you. Don't let sickness steal that from you. At the same time, just because you're moving forward with your life doesn't mean you have to give up on being healed.

It's OK to keep praying for healing.

Some folks receive miraculous healings and are freed from their physical suffering — that's awesome. However, there's no guarantee this will happen for you, and after a few dozen times of asking for healing, you're going to start to feel like God's ignoring you. He isn't — He's doing something way more interesting.

Remember Jesus' parable of the unjust judge? The widow in the story repeatedly pleaded for help from the judge until — out of exasperation — he finally gave her what she needed. Jesus said the purpose of that story was to show His disciples that they should "always pray and not give up."

Don't miss the truth there. Simply refusing to give up on God's ability and desire to heal you is an act of worship. You're essentially declaring in faith, God, You may not have healed me yet, but I'm not giving up on Your goodness or sufficiency. As you keep coming back to Him with requests for healing, remember this: The most important reward for your relentless prayers won't be the healing you hope for, it will be the deeper relationship that comes from repeatedly drawing near to the One who says, "Come to me, all you who are weary and burdened, and I will give you rest" (Matthew 11:28, NIV).

That rest is a promise, and you're going to need it, because the only thing more taxing than your symptoms will be your fear that it's your fault you're not healed.

Don't blame yourself.

Although you'll grow closer to the Lord in your prayers for healing, you're going to have times where you start to wonder if it's your fault it hasn't happened yet. Unfortunately, other people will reinforce that.

Believers will imply or explicitly say you that you could get healed if you just had enough faith. They don't realize how you're hearing those words: It really is all your fault.

Don't believe it.

If you have enough faith to ask for healing, you have enough faith to be healed. There was once a father who begged Jesus to heal his son and thereafter confessed, "I believe; help my unbelief!" (Mark 9:24). Jesus wasn't intimidated by that dad's doubt — He responded by healing the boy. Which begs the question: Why hasn't He healed you yet? Perhaps it's for the same reason He allows other people to endure hardship. And you may never know what that reason is.

You don't get a pass on suffering.

There are good single folks who can't find a spouse, pastors struggling with chronic depression, and people who've been stuck in dead-end jobs for years. They have also felt the ache of waiting for a breakthrough that may never come. Like you, they may struggle to see how anything positive can come of their hardship.

Nothing positive is going to come from your diagnosis — unless "all things" truly do "work together for good" for those who love God (Romans 8:28). Because if they do, then take courage. You wanted a miracle, you've got your miracle: God is converting your struggle into a blessing for you and everyone else who loves Him.

Every doctor visit, every time you forgot how to type, every time you couldn't form a sentence, every discouraging medication change, every time someone made a careless comment about epilepsy — all of it is adding up to good — right here, right now.

This illness is coming to an end.

I'm not talking about embracing some kind of optimistic martyr complex here. Nobody wants physical suffering any more than Jesus did when He was in the garden of Gethsemane. Yet Jesus himself said "a servant is not greater than his master, nor is a messenger greater than the one who sent him" (John 13:16). We are in good company in our sufferings. Jesus learned obedience through what He suffered, and so must you.

Jesus is calling you to the obedience of faith. He desires you to walk in the hope and conviction of things you cannot see. That kind of hope will keep you knocking on a door that hasn't opened and looks like it never will. That hope will give you eyes to see that chronic illness as a "light, momentary affliction" that's somehow "preparing for [you] an eternal weight of glory beyond all comparison" (2 Corinthians 4:17).

And someday that hope will be realized when you hear a "loud voice from the throne [of God]" and the announcement you've been longing for:

"Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away" (Revelation 21:3-4).

Goodbye, illness.

Yes, praise God, you will be healed — that's settled. But regardless of when it happens, be at peace. You're on the journey of learning to believe it before you see it.

Copyright 2017 by Joshua Rogers. All rights reserved. 

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