Extreme weakness. Debilitating fatigue. Severe pain. Multiple other symptoms. Every day. For years.

Emotional grief and depression. Mental struggles. Spiritual struggles and warfare. Disappointments. Relationship tension and social isolation. Missing out. Crushed hopes and dreams. Uncertain future.

These are some of the hard things I have faced and experienced while living with serious chronic illness. I know that, when living in hard circumstances, hope can be hard to come by. But I also know that hope is vital for living well with and coming through chronic illness.

Before I got sick, I seldom thought about hope. That is, I seldom thought about real hope. I hadn’t needed to wrestle with that issue before. But then Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) invaded my life and didn’t go away. It went on and on. Weeks turned into months, and months turned into years. It left me extremely weak and debilitated, and bed-bound, unable to get around without the aid of a wheelchair or crutch. The illness had no known cure, and, though I had hope of it improving someday, I had little hope of it ever going away.

I desperately wanted them to find the problem behind my dozen or so symptoms, fix it, and get me back to life as soon as possible. But as I lay in a hospital bed, listening to the doctor give a long talk about Chronic Fatigue Syndrome that left my Dad and I with the impression that he didn’t have a clue about the illness he was diagnosing me with or what to do about it, I realized that my hope for a quick fix was not going to happen. Life as I knew it had ended. Now, looking back after going through all that I have, I realize how far removed from reality that ‘hope’ was.

My Dad brought me home from hospital and laid me in the big double bed in our guest room. For a while, I felt so helpless and hopeless. I was stuck in bed extremely sick with a misunderstood illness that was physically agonizing, unable to care for myself, much of the time barely able to do anything other than lay there, and with no time-frame whatever for how long I would be there. It was God’s mercy that I didn’t know that I would be there for the next two years! My parents began valiantly searching for answers. They took me to doctor after doctor and tried remedy upon remedy. But most of those things made very little difference in my condition.

Finally they decided to try a functional medicine practitioner in the United States. No, they didn’t fly me over there, though that option was considered. They talked to him over Skype. He was super optimistic and sure that he could cure me. He put me on a paleo autoimmune diet and prescribed a vast array of supplements for me to take. Yes, I was taking around 35 pills or capsules every day. No fun! 😛

But God used this! It did something! Though it didn’t cure me, or even strengthen my body enough to get me out of bed, it did decrease my symptom severity from about a ten to an eight. But there I stayed.

After a period of waiting, and more tests that included Lyme testing (which came back negative), he informed us that he didn’t know what else was wrong with me. We hit a dead end and I hit hopelessness again. I had begun to see light at the end of the tunnel. I felt like maybe this was the time God would bring me out. Instead, things got worse. My neuralgia became almost unmanageable, and tension in a precious relationship was growing more painful as well. This was in the early months of 2018.

At this point, I began to seriously pray about and wrestle with this issue of hope. What is hope? It has to be more than wishing away painful circumstances or wishing for better days. How do I find and cling to hope when my circumstances seem as though they will never change, or even get worse? How can I keep from losing hope? Where can I find the hope I need to keep pressing forward through my difficulties?

Medically I decided that the next best thing I could do at this point was to learn pacing methods (pacing is the typical management strategy prescribed for people with CFS/ME) and put my life back together the best I could. I worked on this for a few months. And then a family medical crisis,  followed by another busy and stressful month worsened me again, and towards the close of 2018, I hit hopelessness again.

Months of effort to improve my condition with pacing methods, in addition to two stressful months, culminated in a massive crash that threatened to put me back to where I had been a year before. But since then, treatments from a local natropath have worked wonders and I am now dramatically improved and out of bed. Praise God!! When I began these appointments, I remember having a conversation with God in which I prayed that I would be able to truly place my hope in Him, not in physical answers. As I was sitting in the waiting area for my first appointment with the natropath, I kept the lyrics of the song Even If playing in my head.

“I know You’re able and I know You can

Save through the fire with Your Mighty Hand

But even if you don’t my hope is You alone.

I know the sorrow and I know the hurt

Would all go away if You’d just say the word

But even if you don’t my hope is You alone.”

I didn’t know, of course, what the result of this round of appointments would be, but I knew that it was in God’s hands and that He would do whatever is good and best for me.

Of course through all this time, I knew that my hope needed to be in God. I wanted it to be in God. But sometimes I have to wrestle with issues to learn to apply them practically in my own life.

I don’t know where this post finds you today, friend. Maybe you’re in a similar place to where I was. If so…I’m sorry. I know that it’s so hard. 😦 May I come alongside you today, and share a few of the lessons Jesus is teaching me about hope?

The first lesson I am learning about hope is this:

1. Hope is about knowing a Person – Jesus Christ

When we are suffering, we need more than just truth. We need relationship We need the real presence of a real person – Jesus Christ.

I believe that, when a person is suffering, the most precious gift you can give them is  your presence. Simply being with them can mean so much!! This is what Jesus gives us! He has made his home in the hearts of each of God’s children, and has promised never to leave, even in suffering. Even in chronic illness. Even in failure and loss. Even in depression. Even in our darkest times. Even when we feel completely abandoned, forgotten, and alone. Knowing that Jesus is with me, even when I cannot feel His presence, has brought so much comfort to my heart. It is a reality that I cling to more than almost anything else. Knowing Jesus in the midst of suffering is a precious gift. He has promised never to leave or forsake me. He is a Friend who loves at all times, and who sticks closer than a brother. To have His always presence with me is to have His always present Love, Peace, Joy, Comfort, Power, Grace, Wisdom, Hope, Light, Goodness, Life, and Truth.

My friend, I encourage you to dig into your Bible for truths about who God is, and ask Him to make those truths real for you. Ask Him to reveal Himself to you in your suffering. We were created for relationship. Let Him lead you to hope.

2. Hope is rooted in the Gospel

Disappointments shook my hope. On several occasions I saw light at the end of the tunnel and wondered if God was about to bring me through, only to see the light snuffed out. Many times I’ve had thoughts such as, “Maybe this test will show something positive? Perhaps this treatment will get me out of bed? Hopefully I’ll be well enough to do such and such?” Only to be disappointed time and time again. I’ve ridden the roller-coaster of hope and disappointment, hope and disappointment. I’ve struggled with not wanting to hope any more because I don’t want to be disappointed again. Have you been there?

What if, instead of allowing our disappointments to squelch our hope, we allow them to birth within us a hope that is far greater?

I think that, in order for this to happen, we have to look to the cross.

Friend, if ever there was a situation that looked utterly broken and hopeless it was the cross. I mean, the promised Messiah, the One that the Jews had waited centuries for, the One who would save Israel, had just been killed. Hope was crucified in a cross. He died. Then he was buried. Physical darkness enveloped the land, and it seemed as though a greater spiritual darkness had overcome and snuffed out the light of hope.

Yet, God was in control the entire time. He wasn’t panicking about things getting out of hand. He knew that the crushing of His Son was not the end. It was part of His good plan. You see, on that cross sinless Jesus bore the full weight of our sin and took the punishment that we deserve.

The suffering and seeming darkness were only for a time. Better days were to come.

After three days, Jesus rose from the grave, breaking the power of sin, defeating death, and crushing Satan’s head. His shed blood meant that our sins could be washed away, and the wall that separated us from relationship with God could be torn down. It meant the end of true eternal hopelessness – separation from God in Hell – and the birthing of true eternal hope – eternity with God in Heaven.

“We had hoped…” Luke 24 shows that the disciples had their hopes and expectations surrounding Jesus of Nazareth. They were so sure that He was the one who would save Israel. Can you imagine the sense of hopelessness that these and the other followers of Christ must have felt in the time between the cross and the resurrection? But God’s plan was so much bigger than their expectations. Jesus Christ didn’t come to save Israel alone, but also the entire world. He didn’t come to free the Jews from the tyranny of Rome, but the whole of humankind from bondage and eternal consequences of sin. What looked like hopelessness, what looked like defeat, turned into the greatest triumph in history.

Friend, if God can work such tremendous good out of something so dark and horrible as the cross, then He can surely work good out of the brokenness and seeming hopelessness of your situation right now. In this place we live of the ‘now but not yet’, in this place of in-between, we can place it all in His hands and rest in His promises.

3. We Hope in God’s promises

I have struggled to define hope… but I appreciate this definition by Pamela Piquette, co-founder of Chronic Joy Ministries:

“Hope is the confident expectation of what God has promised, and it’s strength is rooted in God’s faithfulness.”

Isn’t that good!

We have a God who has given us a whole Bible full of promises, and who has promised and cannot lie. 2 Corinthians 1:20 says,

“For all the promises of God in Him are yes and in Him amen, unto the glory of God by us.”

Some of His promises are for the here and now to help us through the hard days, but some are unseen as of yet. Like this one:

“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you,“ 1 Peter 1:3-4 (emphasis mine).

Honestly, simply knowing that I would go to heaven someday didn’t always bring me much comfort. It felt like something that would happen some day in the distant future. I mean, here was I at the beginning of my life, not the end, in the middle of agonizing circumstances… heaven just seemed a long way off. Did I have periods of time when I wanted to die? Absolutely. The suffering was that bad. There were periods, when my illness was at its worst, when I wondered if that’s what dying felt like and if maybe I would die. My illness wasn’t life threatening. I knew that. But for the longest time there was no way out. I felt as though I had to bravely suffer on and on.

However, thinking about heaven did comfort me. During those long days in bed, I would often lay there and try to imagine what heaven is like. In heaven, my body will be completely healed and whole. This sick, weak body that is wasting away will be replaced with a new, perfect, glorified body like Christ’s. We will know love in it’s fullness. We will be able to dwell in the fullness of the His holiness without shame and stand in the fullness of His glory without fear. There will be no more sin or suffering of any kind. Everything will be as it was meant to be. We will have perfect relationships. Every need will be met and every desire satisfied above and beyond all we could dream or imagine.  Every wound will be healed and every tear will be dried. Every loss that we have suffered here will be more than made up for. And best of all, we will be with Jesus and will love, serve, and worship Him forever. This hope is more awesome than we can fathom and more sure than we could wish!

This hope is certain because He is certain.

The reality is, heaven is not just something in the distant future. Jesus Christ has promised to return… soon. Remembering that my Saviour could come at any moment and thus end my suffering at any time as has often comforted my heart. It has also helped to give me the motivation to press on and be faithful.

But in the meantime, you and I live in the ‘now but not yet’. And in this place of in-between we can trust in His promise of the glorious inheritance that is coming for us. We can trust in His always presence with us. We can trust in His everlasting love, in His peace that passes all understanding, in His acceptance of us as His beloved children, in the spirit of power, love, and sound mind that He has given us (not the spirit of fear!). We can trust His promise to bring good out of what we are suffering right now. He promises that it is only for a season. As we surrender to Him, He will use it to make us more Christ-like and prepare us for the glory that is coming. He may not change our circumstances, but He can and will change us.

Romans 5:3-5 say,

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Because of this hope and by God’s grace, we are able to rejoice in hard circumstances. Because of the sureness of the character of the Promiser, we know that this hope will not put us to shame. Because we are indwelt by the Holy Spirit, we are guaranteed an inheritance that we will one day receive. Christ in us is the hope of glory.

4. We hope in the goodness of God

True hope goes beyond current circumstances, beyond fix-it solutions and happy endings. It isn’t the outcome that I think God should work out for me. Hope is about believing to see God’s goodness, both beyond my pain and in my pain. It is fixing my eyes on Him and choosing to see my circumstances from His perspective. It is waiting expectantly to see His goodness.

It is believing that the outcome he chooses to give me is good, even when it’s different to what I had hoped. 

Psalm 27:13-14 are verses that I have turned to for encouragement many times.

“I had fainted [I read this as ‘given up, lost hope’] unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD, be of good courage, and He shall strengthen your heart: wait I say on the LORD” (parenthesis mine). 

Chronic illness is incredibly hard. I know what it is to feel like I can’t do another day and want to give up. But I am learning to remind myself of the goodness of God and to intentionally and purposefully look for it. When I first became sick, the Lord blessed me with a close friend who walked with me through the first two years of my illness. One of her strengths was a beautiful confidence in the goodness of God. I remember sharing with her one time, how her confidence in God’s goodness helped me to embrace that same confidence in my own challenging circumstances.

On another occasion, this same friend suggested I keep a running list of ways that I saw God’s goodness and love in my life. I did that on and off for some time. Not only did it help my perspective, but it also gave me a record of some of the ways God was showing His goodness and love to me in my suffering. Friend, I challenge you to do the same. Let’s believe that we will see His goodness. We don’t have to wait till the storm clears to see it. Let’s look for it right here and right now and let it give us hope.

God will always do what is good, because He is good. If bettering your circumstances and bringing healing and restoration is in His good plan for you, rest assured that He will do what is best. Don’t quit praying for healing. Hope for healing, but hope in His goodness. There is a difference. 🙂 Jehovah Rapha, the God who heals, loves to redeem and restore. He specializes in taking brokenness and mending it. He is able to take our greatest disappointments and use them to birth real hope. Hope that goes beyond the difficult here and now.

Disappointment can be the door that opens our hearts to more of Him. 

As children of God, we have hope that goes beyond current circumstances, and that is deeper than our deepest pain and struggles. It is bigger, better, and grander than things “getting better” or happy endings or not going through hard things again. It is a hope that goes beyond this present moment, beyond these fast falling tears, beyond the long stretch of scary unknown that lies before us. It is a hope that shines brightest in the darkest night. A hope that stands the test of time, and the test of fiery trials. It is a rock that remains unshakable and unmovable. It is not wishful thinking. This hope that I personally have in my Saviour is rooted in the promises of a God who has promised and cannot lie. This hope is expectation of the fulfillment of His promises, expectation that is sure because of the truth and immutability of His character. It is a hope that we can have one hundred percent confidence in, knowing that we will not be put to shame. Friend, our hope is a living hope because we have a Living Redeemer who is able to redeem our most painful trials and use them for His glory and our good.

Today, as I say goodbye to what was and look ahead to a new life, a life lived outside of my bed and the four walls of my room, ahead to future that is yet unknown and that seems frightening at times, I am choosing to place my hope in God’s goodness. I am praying for eyes to see His goodness. Hope is still a struggle for me. Dare I hope and pray for this to happen? What if I’m disappointed again? However, I am choosing to seek His presence and to rest my hope in His character and promises. He doesn’t promise that life will be easy. He doesn’t promise that He will give the answers I want when I want them. But He does promise that it will be worth it.

No matter what happens we can have this confidence:

We can never truly lose hope, because we can never truly lose Him.

With love, ❤

Caitlin