This is my third year of suffering from Chronic Fatigue Syndrome (CFS)1 and I often pray that it will be my last. It has turned me from a confident, extraverted, active, independent person, who hardly ever said ‘no’, into someone trapped in a frail, exhausted, pain-filled body desperately desiring to be able to get out of bed. In a few days, I went from being a young, enthusiastic and highly-driven ministry trainee to being someone stripped of their ability to work, study, go for a run or travel very much; to someone often limited to their bed or couch, missing church, parties, or hanging out with dear friends. It has changed my life so dramatically that it has shaken me to the very core of who I am.
For those who have CFS, the experience is at times unbearable and often overwhelming. Physically, the fatigue sometimes becomes so bad that my whole body feels horrible, like each muscle is being injected with a poison of pain and heaviness. It affects me mentally (as I struggle to concentrate, read, think or interact with people) and emotionally (as I grieve what I have lost and struggle to cope with life as it is now). My life is so much slower and more limited. I often feel frustrated, isolated, lonely; sometimes I can’t feel much at all. It’s relentless, it’s 24/7, there’s no certain treatment or cure and there is no escape or end in sight.
I often find being a Christian with this illness very hard. My mind can sometimes be too foggy to read a few verses, let alone try to think about them and apply them to my life. It’s hard to keep giving my life to Christ when I don’t really like what he’s doing with it, when embracing his will means accepting horrible pain, disappointments and a lack of answers. Sometimes God just feels so far away, and I feel like I’ve got no trust left, that I can’t do it anymore, and I get angry at him because of the situation I’m in. In those awful moments when I don’t cope, I still find myself crying out: God, I know that it’s your will that I’m sick, but does it really have to be this bad, right now?
My story is not one of victory, but of struggle. It isn’t one of knowledge and godliness achieved, but of constant wrestling and learning and re-learning. God is using this trial to teach me—sinful me—some of what it means to give up my life to him.
Hopes and dreams
From the time I was in high school I knew I wanted to serve God in full-time paid ministry, and I had a particular passion for chaplaincy in schools. So instead of following my friends to university, I chose to train at a school and church to learn more about God and ministry. Although I learnt much during my year there, since getting CFS at the end of that year I have learnt so much more.
I had so many plans, hopes and dreams for my days on this earth, but I’m learning I’m to surrender even these to God. I thought I had good plans, but God’s promise is that his plans are best. He’s reminding me that the main purpose of my life isn’t to necessarily do all these things (though I would greatly enjoy that!), it’s to bring glory to my creator and Saviour, whatever my life looks like. My hopes and dreams seem distant, and often even dead, but God’s work of shaping me into Jesus’ likeness has been made even more alive by this trial (1 Pet 1:6-7)2. May I accept that he is the one that chooses how he will use me for his glory. I need to want for my life what God wants for my life (Matt 6:9-10), even when that means missing out on things I deeply desire, and to learn that there are more important things than what I think will make me happy or successful.
Where to turn
Throughout this suffering my heart seeks comfort and joy, and I’m ashamed at how often I’ve turned to our broken world for these things instead of to God. I’ve found that my biggest challenge in any day is to run to him, not to the world. I wonder sometimes how many things God has to take away from me before I listen to his voice? “Cling to me. Cling to me. I love you!” God is teaching me that the things I put my hope in, in this world, could be gone at any moment (Matt 6:19; Luke 12:16-21). He wants me to cling to him—the only everlasting (Ps 73:23-26).
Constant fatigue is a reminder of my frailty, weaknesses and never-ending need for God. It never lets me forget that I am small, God is huge, and he doesn’t need me to get his work done (Isa 40:12-28). I’m reminded of God’s complete control—he is the one who decides whether I get out of bed and how much I can do. It keeps me on my knees, and I’m learning that’s the best place to be, for that is where I belong before my incredible God (Ps 46:10).
This illness has also helped me realize that there are things I’ve been finding my worth in apart from God; I thought my value was caught up in what I did or accomplished. But I am learning that I am no less valuable just because if I added up all I now ‘achieve’ in a whole day, it would only fill an hour of my old normal day. I am just as worthwhile, loved and significant, even if I can’t get out of bed, and before I’ve uttered a single prayer. May this truth crush the need I have to achieve things each day to feel good about myself, and teach me to surrender to God the things I find my worth in apart from him. For my value comes from who God has made me, the qualities he’s given me and what he has done to make me his child (Eph 1:3-8).
Caring for myself
I used to believe that living sacrificially meant that caring for others was always more important than looking after my own needs. But I’m learning that this is not what it means, nor how Christ intends me to live. I am just as important as others, not less important like my actions led me to believe. I need to take care of myself so that my physical, emotional and spiritual needs get met (which is my God-given responsibility as steward of my body), and only then am I free to love and serve others willingly and without burning out. I’m discovering how necessary rest and relaxation are (Eccl 4:6), and I’m learning that it’s wise for me to check if I’m going okay before deciding whether I can help someone else, or whether in fact I’m the one who needs some help!
I have never been great at asking for help, or admitting when I’m not coping, but I’m learning that it can be helpful to be real with people about how hard life is. If I do it lovingly (my motive not being to complain), then it can encourage others not to hide their struggles, and show them that they are not alone. It can create a culture of honesty, where I can care more deeply for my brothers and sisters in Christ, and they for me.
This illness causes me to yearn for heaven in a real and unique way, and on the days I can really grasp its reality, it puts the pains of this life into perspective. In my life before CFS I found it so easy to become engulfed in daily comings and goings. The slowness of my life now, the absence of that busyness, has helped me pull my head out of life in this world, and better understand these four words: this life is temporary. And much comfort is found there (2 Cor 5:1-10; Phil 3:20).
So although I will continue to pray for healing, I want to even more earnestly pray for strength to keep giving my life to Christ and trust him in the midst of my illness. May I not run from suffering but run to my Saviour, and keep pleading with him to teach me to love him and his ways more than I love my life, and the comforts of this world.
- Also known as myalgic encephalomyelitis (ME). Sadly in the past there has been some dismissal of people suffering from CFS as being hypochondriacs, or suffering a mental illness. But “CFS causes significant ill health and disability in sufferers, and it is an officially recognised medical condition by the World Health Organisation International Classification of Diseases” (Leigh Hatcher.‘What is CFS?’, http://www.notcrazy.net/cfs, accessed 02/09/2010). For more information: http://www.
notcrazy.net and http://www.mecfs.org.au. ↩
- I have included some verses throughout this article that have been helpful for me at different times in my struggles. ↩