The ‘ongoing mystery’ of chronic pain

I am now 40 years old, and for as long as I can remember I’ve had physical pain in my body. It got worse in my early 20s. Always tummy aches, migraines, muscle pain and nerve pain. Doctors have never been able to truly diagnose what it really is; they tried calling it fibromyalgia, but aren’t sure. Four years ago, I slipped a disc. That has aggravated the pains in my body and it has been worse since then. A few months ago my ten-year-old daughter said: “Mummy I can’t remember a day that you were not in pain.” 

Sometimes there is a breakthrough – but just for a few weeks. I have had this happen so many times since my early 20s and again last June. I heard God speak about something, we followed it up, saw a bit of a breakthrough and now we’re back to square one. This is really, really tough for myself and the people around me. You hope, you pray, you believe, God speaks, you act, you see breakthrough and then here we are again. There is disappointment, you get angry, you surrender, you cry, you try to be tough, then you let God break off the wall around your heart again, and all that sometimes in the space of 24 hours! 

Our children see me singing wildly and loudly with passion at home and on stage and they also see me collapsing after

My husband and children see it daily, as much as I like to hide it. Our children see me singing wildly and loudly with passion at home and on stage and they also see me collapsing after. They see my highs and lows like no one else, but they also see how I put my faith in Jesus, every single day – I hope that’s the part they remember.

I’ve had moments during the time we lead worship when I have less pain, and sometimes even that the pain is completely lifted. In those moments I am able to move and dance freely. I experience a certain freedom in my body and in the room. It doesn’t make sense, but I walk by faith. 

It’s really hard for us as Christians to have chronic pain. Every mum and their uncle want to pray for you for healing and deliverance, and as much as that can sound really kind, it can actually be really tricky and frustrating. I am now at a place that I can say to people: “Yes, you can pray for me, but I might not let you lay hands on me right now.” People don’t know how to respond to that; they get upset because somehow people think I always want prayer, but no I don’t and I know I’m not the only one. I do believe every prayer matters. Our prayer changes things, whether we see it right now or in five or 40 years’ time or in eternity. 

This whole journey of suffering throughout the years inspired me and my husband to write a song called ‘Don’t pass me by’. Every line in that song is our daily walk, our daily battle, our daily surrender. The first verse is: I believe that you can heal me / And that you’re longing for it too / I don’t understand the waiting / But I still choose to trust in you. / I hear rumours of you moving / That you’re right here in this room / I reach out to grab your garments / God I won’t let go of you.

So often I hear amazing miracle stories that happen around us, in our church or people get healed during the times when Rich and I lead worship together. I heard two weeks ago that someone got healed the first time we sang this song at David’s Tent this year. When I hear these stories it’s both absolutely amazing and incredibly hard. There has to be space to process that. To ask: “Why would God heal them and not me?” 

Probably monthly I say: “How long oh Lord, how long?” But I also ask him: “If you don’t heal me today teach me how to walk this road in grace, in love and not give up and please let me have a deep connection with you in this all.” This is my daily prayer: “I believe you can heal me, but if I don’t find my healing on this side of eternity let me be as close to your heart as I can possibly be.”

To be known is so important. A road of suffering can be so incredibly lonely

Someone said to me recently: “You must be really angry with God” but my honest answer to him was: “No, he’s the only one who really feels how I feel.” Do I have moments of anger? Oh yes, but it’s absolutely not my primary feeling with God. 

I lean into God in everything I do – from the moment I wake up till the moment I go to sleep, because if I give in to what I’m feeling, I would be in bed most days doing nothing at all. Everything I do comes from intimacy with Jesus. He’s my everything; he is teaching me every day how to walk this road. How do I keep my heart soft? The answer is again by grace and by making some very intentional decisions; I choose not to let my heart go bitter. So, when I hear a healing testimony I place my hand on my heart and ask God to protect me from cynicism. I ask him: “Please, keep my heart soft and open and innocent. I know you are good.” I make declarations after to keep my heart far from bitterness. I don’t let any seeds grow that might be scattered in a moment like that. 

Also, I have a few people in my life who see how I’m doing without me having to tell them. To be known is so important. A road of suffering can be so incredibly lonely.

I often read Psalm 71: ‘Don’t let me be disgraced. Save me and rescue me, for you do what is right. Turn your ear to listen to me, and set me free. Be my rock of safety where I can always hide. Give the order to save me, for you are my rock and my fortress. My God, rescue me from the power of the wicked, from the clutches of cruel oppressors. O Lord, you alone are my hope” (vv1-5, NLT).

These kinds of psalms are like balm for our souls in moments when we don’t know what to pray anymore. Thankfulness is another amazing tool to stay far from bitterness. When I feel myself sinking I’ll say all the things I’m grateful for. Rich and I challenge each other: “Let’s say at least five things we’re grateful for.” This could be as simple as the coffee we’re drinking and the sunshine, the breath in our lungs, to a hopeful future! We choose thankfulness, but are also very real about the now with each other. 

It’s an ongoing mystery. I don’t have all the answers, but one thing I do know is that he is the God who knows. He is the God who sees and he is the God who hears. And that is enough for me. 

Lydia Dicas was born in the Netherlands and has lived in the UK for the last 13 years. Lydia and her husband Rich lead worship and prayer around the UK and with their children are part of KXC church in London. Her single Don’t pass me by will be released early February 2025. richandlydiadicas.com