Chronic illness. Two seemingly simple words. But for many of us they can be deeply confusing:

• Perhaps we have a chronic illness ourselves and do not know how to persevere.
• Perhaps we know someone with a chronic illness, and we would love to walk alongside them well, but we find the whole thing quite overwhelming and daunting. We do not know where to start.

My mum is fond of saying, “you can’t eat an elephant in a single bite, you need to do so one bite at a time.” Pachyderms and sayings aside, I find this analogy helps remind me that life for us humans is complicated. But, wonderfully, that is not true for our heavenly Father whose understanding is unlimited. And therefore, with him, we can explore things, entering into others suffering appropriately, one bite at a time.

So, let’s take a bite together.

What is chronic illness?

A chronic condition is broadly defined as an illness lasting more than a year – one requiring ongoing medical care and/or having a limiting impact on the activities of daily life. Many of these diseases are without cure, for example, Crohn’s disease, Rheumatoid Arthritis, Chronic Fatigue Syndrome, and many others.

I’ve had autoimmune conditions for most of my life. Conditions that bring with them limitations. I have the privilege of talking with others who have them too, or who love and care for those who do. In these conversations there are daily challenges that come up repeatedly – themes that I experience too. They won’t apply to everyone, but I’ve picked four to share.

Four challenges faced

• Not looking ill

Chronic illness can also be referred to as “invisible illness.” Often the person doesn’t look unwell, as the frequent response of “but you don’t look ill!” will attest. There’s no cast showing a broken limb or skin pallor indicating something might be wrong. And, of course, this is confusing – for us and for those who don’t know us. There is a contradiction of what is seen and reality.

• Feeling unseen

Life is busy and complicated. We have many and varied calls on our energy and time. My illnesses mean there are often events I can’t be at or involved with and this grieves me. I frequently miss social and church events – events I’d love to be at. And even the occasions I am at require ongoing condition management.

Words that capture this include feeling “isolated,” “left out,” “invisible,” “out of sight, out of mind,” “forgotten” and “unseen.” Humans are made for relationship, for community – feeling unseen is hard.

It’s easy to assume that I’m not at things, particularly church things, due to sin or lack of commitment. I am particularly grateful for those who find specific ways to check in with a kind, ‘missed you’ message; a phone call or asking to pop in for a coffee – invitations that don’t need me to leave the house.

• Resting is rarely restorative

This occurs particularly where conditions come with reduced energy, pain, or mobility challenges. We cannot do more. We must stop. So, we ‘rest’ and yet even that ‘resting’ can leave us feeling just as weary as before. I’ve found a more helpful way of explaining this is: needing ‘recovery’ time after activity or ‘preparation’ time for activity.

I do understand that people can feel envious of how much I ‘rest.’ It sounds idyllic, doesn’t it? To rest and relax and yet so much of it is not relaxing. I’m particularly touched and grateful when someone seeks to understand by asking gentle questions about what rest means.

• Exhausting circumstances

We all know what it’s like to feel tired. Many chronic illnesses come with fatigue, e.g. brain fog, limited energy, pain, insomnia. But I want to talk about a different type of weariness here. The fatigue that comes with repeatedly explaining your condition or aspects of it to those who don’t understand. Anxiety because you don’t know from day to day if you’ll be able to do something or if you’ll have to cancel. Not feeling well, being ill all the time. Having to handle distressing symptoms that just don’t go. Exhausting appointments (as grateful as we are for the gift of care and medication!) The reality of progressive degeneration. Not having a positive response to “how are you?” Often feeling defined by the illness. People walking away because it’s difficult to stick around for the long haul.

It can be very hard to put these struggles into words and I’m grateful for thoughtful questions inviting me to share, like ‘you seem really anxious, would you like to talk about it?’ and the freedom to respond with a gentle ‘no, but thank you for asking’ or ‘yes, but I’m a bit too tired right now’.

Four encouragements in Christ

But it’s not all hopeless. I want to share four things about Jesus that are increasingly meaningful to me in these struggles.

• Jesus knows – He is the only one who truly understands every human heart, frailty, struggle, and situation. He gives love, compassion and grace and grows us in doing the same.

“He tends his flock like a shepherd: he gathers the lambs in his arms and carries them close to his heart…” (Isaiah 40:11)

• Jesus sees – He has called us his own and we are secure in Christ’s saving work. Being made into what we are, conformed to his likeness. We are children of the king first and foremost – that is our identity, not our illness.

“…you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.” (1 Peter 2:9)

• Jesus is our peace and rest – He is with us in all things, even in those wakeful hours of the night. However he has orchestrated our lives and limits, he is in the boat with us in the storm, as he was with his disciples that day on the lake. He remains with us always and one day he will quiet that storm for good and make everything right and new.

“My salvation and my honour depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.” (Psalm 62:7-8)

• Jesus is the wounded saviour – Jesus fully understands suffering. In his humanity he was tired and weary. Who else has a God like ours?

“…Jesus, tired as he was from the journey, sat down by the well…” (John 4:6)

Jesus is the wounded saviour, the lamb, the rescuer. How astounding that his wounds bring us such profound hope.

These brief reflections share a snippet of some of the challenges of living with a chronic condition. I hope they encourage us in thinking about how we might grow together in walking wisely in love and grace as children of our beautiful risen king.