A letter to the world

This is a piece of prose I wrote in the early years of living with ME. I remember feeling immensely frustrated when people in my life told me I looked well and was really lucky to have fully recovered from ME!

The fluctuating and invisible nature of the illness just passed everyone by, leaving me feeling completely lost, alone and unseen…

Letter to those in a world untouched by ME

By Rachel Hazlewood

Your sleepless night; your tiredness; your headache or foggy brain.

All of your bodily aches and pains I understand. I am compassionate. You have my concern and support for all of these and so much more.

But more than this, you have my understanding – my empathy. For I know what these feel like. In your moment of ill health you are not suffering alone – for I am right there with you, walking by your side, feeling every step with you.

I do not have a monopoly on pain, on fatigue, on feeling ill from head to toe, or that inevitable accompanying feeling of frustration and incompetence. Yes, you are entitled to this and you will have my love and support and concern – without hesitation or question.

But know this: take that feeling and know that it will pass. It may take only minutes, it may take hours or even days. If you’re really unlucky you will feel ill for a few weeks, or even months. But it will pass. And when it does you will forget – oh how quickly you will forget what torment you lived through.

But know this… it will pass… how quickly you will forget

So, when you are at your lowest ebb; when you are in the deepest depths of your suffering, please find a small chink of humanity and compassion to capture that feeling and to hold onto it.

Think. Even just for the most fleeting of instants, what life is like for those of us patiently waiting – waiting for minutes, hours, days, weeks, months and years. So many minutes, so many days, weeks, months and years we can no longer keep count. Waiting for the ubiquitous symptoms to pass, hoping those symptoms will pass, yet knowing, in our hearts it is unlikely.

We go on. Of course we go on – we have no choice. Finding ways to keep going, adapting, adjusting – gleaning what pleasure we can.

Drifting through the world – invisible- living a ghostly half life – mere shadows of the people we once were. Our full, energy rich lives a distant memory.

I know you cannot give me energy, or bring a cure. You cannot stop the pain or blow the fog from my mind so my thoughts are clear again. And yet you can make a difference. You can take the time to look at me….. I mean really look at me and see beyond the body standing in front of you, going about her business: functioning. Look closer. Lean in.

you cannot give me energy, or bring a cure… and yet you can make a difference

See the tired eyes, the droopy shoulders and the shuffling feet. See the times I hold onto something to prevent myself from falling over, see the involuntary yawns and grimaces, the shaking muscles spasming uncontrollably….

See the slightly robotic gait or delay when I try to stand. See my lungs struggling to give me enough air to breathe freely. See how often I vigorously yet fruitlessly rub at my glasses trying to remove imaginary smudges, then realise it’s my poor tired eyes that prevent me from seeing the world in all its wonderful clarity.

Look……Look….. and see me – the exhausted, confused and frightened soul trapped in a failing and unpredictable body and mind. See what ME has stolen from me.

Look……Look….. and see me

If you can see all of this and can still bear to keep looking then you may also be wise enough to see deeper still. If you have compassion in your heart then you will see that there is still a glimmer – a small spark of life and hope.

But when you tell me I look well I feel silenced, shut down. My suffering invisible, unimportant, unacknowledged, insignificant. To acknowledge my suffering is to acknowledge me. My illness does not define me, but it is part of me, part of my every day.

To acknowledge my suffering is to acknowledge me

To tell me I look well you remove my voice. I can no longer express who I am. So next time you tell me I look well, I know you do not know me, you have not really looked – you have cast the most fleeting of glances in my direction and moved on in your world of wellness.

Every minute of every day is a challenge. But the essence of being determined is to keep fighting – determined to dig deep and somehow find the strength to get out of bed, to push through the extreme fatigue, the confusion and the pain to make the best of what each day has to offer: to hold down a job; to spend time with family and friends; to contribute to the world in whatever way I can – no matter how small and seemingly insignificant that contribution may appear. To me it is a triumph – a triumph of spirit. Each moment a mini victory.

If you see this, if you really see me, then I thank you. I thank you for pausing, for noticing, for caring and for helping to make the invisible visible.

I thank you for… helping to make the invisible visible

So next time you have a headache or feel tired, or are simply feeling unwell, celebrate its transience and think of all those trapped souls…… think of ME.