The Paradox of ME

What have I done to deserve this?

In the middle of ME, one can hardly believe that it can be part of the design of the Universe, let alone part of the Universe that a loving Creator has designed. One of the first throughts that comes into the mind is "What have I done to deserve this?". If one is really honest, the answer is: "Many things" and though the illness itself is not a specific punishment from God on specific deeds, it acts as a kind of "reminder" that we cannot claim immunity from suffering on the basis of being "decent people". It will be a blessing in disguise if it brings us into contact with the spiritual side of ourselves that we always suppressed (and may have never knew existed).

If we come to realise that we are not just a "decent" person (but a complex mix of rebellion, self pity and self-centreness) we will see ourselves as we really are: "Know thyself" as the start of wisdom is an age old maxim. For those who do not know God, ME/CFS feels comparable to a state of divine judgment on mankind's rebelliousness against His sovereignty and commandments.But the paradox is that only in a place of complete desolation like ME, do we find that our desire for autonomy, free from God, our cherished agenda of "I did it my way", has real life consequences, a "downside". There is a downside to everything and the outcome, in illness, is not what we thought or desired.

One has to grudgingly admit that ME is a perfect "antidote" to self-confident rebellion against God. We start to listen to the teaching that it is only by accepting grace (forgiveness in Jesus Christ) that any of us, including believers, are promised anything except a fiery burning waste, tasted in ME and, as the Bible teaches, a much worse place after death. But God has marvellously provided an escape and rescue plan from this place. In coming to Jesus, giving up our autonomy and saying we are needy and sorry, replacing our self-centredness with God-centredness, we actually find true peace, fulfilment and purpose, even in our life in ME.

Many people can say that this is actually true in CFS/ME, because some have taken that life-changing step. They find that having purpose gives them something to fight with, against ME/CFS. They find a family in the Church in ME/CFS. It gives them the will to work for others and for their own rehabilitation and recovery. I tell the truth: if you do not have God in ME/CFS, you will be hard-pressed to escape anything but a disastrous outcome in ME/CFS. I am only sane, active and alive today because a) God honours his promises in the Bible b) He responds to cries for help, faith and prayer and c) He sends people to act as His "instruments" to help us as we turn to and put our trust in Him.

Saving Grace

Have you noticed that ME is full of other paradoxes?
People who recover from ME are often those who find Jesus Christ and through Him, a purpose and meaning in it, especially those who exhaust their energies supporting others. Once, I asked ME/CFS expert Dr Betty Dowsett “Why?”. In great wisdom, she said that to go on loving and serving at all costs, activates the adrenal glands and supports the healing mechanisms of the body. Finding a purpose in ME is crucial. But that can be a problem in something as nightmarish as ME, even for those who believe. How much more difficult it is for those who do not? What is their final end? Have they considered that? Is it a lonely isolation in desperate circumstances, in a wheelchair? More crucially, is it heaven or hell? Choices in ME are always crucial.

If you want to find out how to become a Christian in ME/CFS, please email me (baileyannis@googlemail,com). I can share what I know, direct you to things to read and give you some Bible readings, which will help you realise that Jesus Christ can use ME/CFS to give you the "crown of life" which is knowing Him personally and become your eventual deliverer from existential angst, loneliness, guilt, pain, sin and ME.

A study of the New Testament leads to the discovery that God is ultimately in control of our lives, even in the worst “accidents”. It teaches that even the most terrible things, like the Crucifixion, must be viewed with the eyes of faith. First, we have to overcome our unbelief and this in turn gives us courage to “tie a knot in the end of the rope and hang on”. We must hang on long enough to realise what the purpose and meaning is in the events of our lives. Sometimes, even for believers, that meaning will not come clear in this life at all.

Jesus teaches in Matthew 10 v 30 "Even the very hairs of your head are numbered". In other words, God knows how many individual hairs there are on our heads which, over the course of one lifetime, is about 20 million. This sounds incredible but if God is God He knows everything, otherwise He is not in control. By implication, he knows all about the cells in our bodies. Have you thought about that in terms of ME/CFS? God knows about the your genes, cellular chemistry in your head, your muscles and your immune system. He made them and knows how they work. He knows what is going wrong and why. I will discuss later why He does not put it right, straight away.

God is Sovereign over everything. God is not only in control in ME (unbelievable as it seems, since ME feels like being in hell) but He has limited ME. He has plumbed its depths and won the Victory. God is bigger than it is. All we have to do is claim His Victory over it. For those who believe, God will use ME to work a great blessing in and through their lives. In someone really seeking to find, know and serve God, He will use their ME, even in retrospect, to make it a blessing,

“For God works everything together for the good of those who are called according to His purpose”
Roman 8 v 28.

How God exactly works "good" in a devastating and apparently cruel illness like ME, is a mystery. The human mind rebels at the thought that God can allow wars, torture, famines and evil in order to bring about these ultimate good purposes. But we have to trust that He can and does. We also have to trust that there is a meaning in ME which is entirely connected to His own purposesand kingdom and that He is glorifying Himself through our illness.

My own suspicion is that in ME/CFS we are being moved on from one less mature "phase" or way of living to another more mature one e.g. from living entirely with our senses and for own humanistic agenda (even if we are believers), to living with more engagement to God alone who wants us to love him above everything else. Anything that prevents that, even our work for Him, can be seen as "idolatry". Philosophers and theologians have long understood that stepping out of self-orientation towards fully God-centred living brings with it more self-knowledge, greater wisdom, maturity and eventually, more happiness and fulfilment.

Fully understanding the mysterious work God has been doing in our lives in ME/CFS comes later! What is happening to all of us, right now, is happening by an Unseen Hand. We understand it only as we look backwards. In the midst of the storm, believers must "lash themselves to the mast of faith", shut their ears to the siren songs of doubt and fear and wait for the Day when they can say joyfully, “I have been mightily supported in and even by trouble”.

John Bunyan wrote “The Pilgrims Progress” in prison. It was an experience in some aspects like ME/CFS: he was marginalised, despised, lonely and disbelieved. The Pilgrim’s Progress tells how “Christian” is trapped and lost in terrifying places like Giant Despair’s Castle and The Mire of Despond. We recognise these places in ME/CFS. Christian’s way is full of monsters, fears, sweat, struggle and thorns, through the ephemeral “Vanity Fair” to the eternal “Celestial City”. In fact, poor Christian is set what seems like an military obstacle course. But isn’t it the immensely tough struggle, overcoming in faith, that makes him fit for what is at the end of his journey becuase they free us from desire for sin? As the Bible says "He who has suffered in his body is freed from sin" (from the desire to sin).

Theologically, because none of us is born like Christ who was perfect, all illnesses “chasten” us, purify us from the wrong desires and less spiritual elements in our characters. They “test” our faith - develop our faith (sort out "bargaining" faith from real faith) or they produce faith in the first place. We despair at discovering the evil inside ourselves which is revealed in illness because we have not got the energy to put on "the mask" of self deception. We soon discover we are unable to defeat that evil without God’s power and His great Love for us. But in turning to Him, the only real Psychiatrist and the Great Physician, we are healed of our real sickness: the deeper, more insidious sickness of our own self-destructive self-centredness.

What is the meaning of being stuck in a wheelchair or shut in a room with ME for 5, 10 or 20 years? Surely it is meaningless, a total waste of life and talents? But is there another perspective? Isn't it a chance to find God in dependence (not in self-dependence) and to know his power (not just to know it theoretically), to sort out how we think about the most important things of life? To deepen our perspective, examine the unfulfilling returns of a superficial life and humanist and materialistic values? Isn’t it a chance to deepen our sense of "grace", to take our focus off ourselves, off our petty desires and fix it on real, lasting realities like faith, love, service, sacrifice, patience, self control, relationships and the warmth of genuine friends, which in the long run will preserve our lives, sanity and souls. ME/CFS certainly works like that, if you observe its processes over the years.

Though ME feels like a sojourn in hell, it is maturing, steadying and/or preserving our souls as nothing else, in the modern world, could...

Alison Bailey, March 2007

Christian Materials for those who are Searching for God in ME/CFS

  • The Jesus Film - If you have speakers on your computer, you can view free, full length, non-commercial "Jesus" film, based on the authentic New Testament text in your own language, by accessing this page
  • For a wide range of online or written sermons dealing with the religious framework set out above: http://www.spurgeon.org/index/rindex.htm and www.allsouls.org

Helpful books examining the Christian faith

  • "Who Moved the Stone?" - Frank Morison. This book was written to find the apparent contradictions in the Bible, to disprove the historical evidence for the Resurrection, but the author was instead converted by his into the gospel records of the Resurrection. Useful for someone interested in the historical credibility of the Gospels (£5.59). Order here:
  • "Basic Christianity" - Revd Dr John Stott. A useful introduction to the basics of the orthodox Christian faith (£3.15).Order here.
  • For the Bible in reliable modern versions use - New International Version (£6.18), English Standard Version (£7.19)

Theological Website

  • My other shared website is "Refuge" on theological issues, in collaboration with a Pastor. It has a page called "The Reformation" on which you can read up on basic beliefs of Calvin, Luther and the Reformed Church, including the Reformed Church of England.

Prayer Requests

If you would like to post a request for prayer either personal or on behalf of people with ME, please feel free to email me or to put it on our Forum.