This article has been written to mark 35 years since the start of my ME on 8th February 1991.
A cruise in the West Indies! Seriously? It was a Safari last year, a railway trip across Australia the previous year, and I can’t even remember what they did before that. And what have I done in the last year or two? Well, I’ve continued gazing from my bed at the same ceiling and four walls as I have done for the previous five years, ten years, and more. My only “travelling” is looking at other peoples’ photos or watching travel programmes with Michael Palin. I would still like to travel. Maybe tomorrow.
The last three and a half decades have not been as I’d planned or hoped for after leaving school all those years ago. No career or job, no getting married and having a family, no home of my own. As the years have drifted painfully by, the four walls I spend much of my time looking at have shrunk. When my illness suddenly struck, I was ill, but not as ill as I am now. I was in pain, but not as much pain as I am in now. Occasionally walking to the local shops, attending church, driving, holidays, were still possible – but not now. Sometimes I think I will suffocate as the four walls close in on me. Will I ever be able to escape? Maybe tomorrow.
Myalgic Encephalomyelitis. ME. That’s the name the neurologist gave me for my illness all those years ago – and I was pleased. Pleased!!! Can you believe that? I was so relieved not to have a brain tumour or something equally terrible – as well as finally having a name for my illness. I thought I would be able to learn about the illness – I knew nothing about it at the start – and then find out what I needed to do to get better. How wrong I was. How naïve. The more I discovered about ME, and the more my condition worsened over the years, the more I realised how wrong I had been at the start. Would I ever get to understand this devastating illness? Maybe tomorrow.
I had unexpectedly got an illness with no treatment, no cure, and very little understanding, particularly from the medical profession, but also from some family and friends – which came as quite a shock to the system, especially when it involved people who have known me for many years or even all my life. ME is an illness that has been classed as a neurological condition for the best part of sixty years, alongside conditions such as Multiple Sclerosis and Motor Neurone Disease – but, despite the fact that it can be fatal, for much of that time most of the public information about and understanding of ME has been hijacked and promoted by those holding to a biopsychosocial view of the illness, a view which is completely wrong and flies in the face of biomedical research and the experience of hundreds of thousands of ME sufferers from around the world. Will things ever change? Will the truth about ME and what a devastating physical illness it is ever be openly acknowledged? I sincerely hope so. Slowly, but not today. Maybe tomorrow.
The two people who have been my rock, my main source of support, and my carers throughout these awful thirty-five years have been my parents, both now in their 80s and not in good health themselves. Will I ever be able to give them the help they need, as they have given me without complaint for so long? It’s not looking likely – but maybe tomorrow.
For the first few years of ME, I had no computer and very little way of finding out about the illness. When I was eventually able to “get computerised”, it made such a difference. Being able to get in touch with other ME sufferers by email and joining email groups. Searching the internet for more information about ME. Contacting a few individuals involved in research and writing about ME. Joining ME charities to try and get some help and support. But did any of this make any difference? Some friendships formed years ago still continue, for which I am very thankful, but all the research I hear about from various parts of the world – what practical difference has it made to my life? Honestly? None! Just increasing vexation as the years pass, the pain increases, and hopes resulting from various “medical breakthroughs” turn to disappointment. Will help come in time for those of us with severe ME? It’s not coming today – maybe tomorrow.
Where I live, there is no medical help and support for people with ME, which is scary. When taken on an occasional drive in the car, I don’t recognise what I see, and there are no places that bring back memories of before ME struck. I hope one day to get back to the part of the UK where I was brought up. It won’t happen today – maybe tomorrow.
Maybe tomorrow. You see, people with ME are not suffering from depression. We are ill. We are in pain. Yet we still have hopes. We still have dreams. We are highly motivated and long to be able to do the things most people take for granted. We keenly follow the medics and scientists involved in biomedical research, waiting for that breakthrough which could change and improve our health for the better. We know what we would like to do tomorrow.
However, with all the “tomorrows” there are many “maybes”. So much is uncertain – our health (or the lack of it) and the absence of help, support and understanding of such a life-shattering illness which affects both sufferers and their carers alike. How can we face the maybes and tomorrows?
The Bible teaches that although we don’t know what will happen in the future, there is a God Who does. He is sovereign and, as the Victorian Baptist pastor C H Spurgeon put it, “when you go through a trial, the sovereignty of God is the pillow upon which you lay your head”.1 We are not promised answers to all our questions. Yet, for those who are Christians, we have the promises in Scripture that God will supply all our needs (cf Philippians 4 v 19) and that “the eternal God is thy refuge, and underneath are the everlasting arms.” (Deuteronomy 33 v 27).
But what about healing? Surely God, Who created this Universe and all that is in it from nothing, could heal us? Yes, of course He could, as nothing is too hard for Him – but it is not always His will to do so. As the late Prof Verna Wright put it: “There is no question of course that God can heal in a miraculous way, and there is no question that God did heal in a miraculous way in Bible times … Jesus Christ is the same yesterday, today and forever in person but not always in purpose, and the evidence which I have personally amassed certainly suggests that His purpose in these days is very different from His purpose in Bible times.” 2
If God does not grant healing (and there are times when He does do so) I have to trust that there must be a reason, a purpose for my continuing illness. In the Bible, Job does not know the reason for his suffering but has to put his faith and trust in God – and so do we, looking forward to the time when we will be with the Lord Jesus in Heaven, free from all suffering and with bodies that work!
However weak we may feel, however much pain we may be in, remember to “Thank God my salvation does not depend on me, but on God’s love to me; not upon my frail grasp of Him, but upon His strong grasp of me!” (Dr Martyn Lloyd-Jones). 3
“For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.” (John 3 v 16).
Hazel Stapleton.
© Hazel Stapleton 2026
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