Where there is uncertainty, there is hope

No one likes uncertainty, no one I know anyway.  One of the most difficult things I have found about living with the chronic illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the vast uncertainty.

The symptoms are bad of course: debilitating fatigue, brain fog, pain, flu-like symptoms and more besides; and also the depression, anxiety and loss of quality of life, that is the result of living with long term illness. But the hardest thing for me is not knowing what the future holds. It’s easier to bear something if you know when it will end. I don’t know how I’ll be tomorrow, let alone in a week, a month, a year, a decade…

I might get better, I hope I will. I might stay the same, a thought that is intolerable to me. I might even get worse. This has already happened to me over the course of my illness. I simply don’t know, and the doctors don’t either. Whilst, perhaps, I have some control over my condition, it often seems completely out of my hands Change happens so slowly, and a bad night’s sleep, a virus, or stress (I’m looking at you Department for Work and Pensions) can set me back weeks, months, or I don’t know how long.

But amidst all of this, a thought occurred to me, ‘Where there is uncertainty, there is hope’. In a way I’m lucky my illness is so uncertain. If you think of someone with stage 3 cancer, which the doctors agree is untreatable, there’s not much uncertainty, and thus there is not much hope for recovery. In my case though, I’m up to my neck in uncertainty.

This drowning in uncertainty feels different if, instead, you look at it as hope. Whilst there is no effective treatment for ME/CFS available in the UK, and there is no cure, it can be hard to feel hopeful, but many people do improve, or even recover. I believe it is this hope that enables sufferers of this horrible illness to wake up every day and face the world they live in.

I would like to point out, however, that sadly many people with ME/CFS also don’t recover. This is what makes the uncertainty so hard. I’ve had many, well-meaning people tell me that I will recover from this illness, as their knowledge is that ME/CFS is always, or often recoverable. I know it is said with good intentions, but I find it hard to hear, and feel it diminishes what I am dealing with, as it is not the truth I know from speaking to many people with ME/CFS who have been ill for decades, and for whom recovery seems impossible.

There is always uncertainty however, and thus there is always hope. Wherever you are in your life right now, whatever struggles and uncertainties you are facing, if you can adjust your thinking and see the hope in the uncertainty, your world will feel brighter.