Being ill is hard.  What an obvious thing to say – and yet how often it goes unspoken. 

I’ve written about many aspects of life with long-term illness: from the grief of dreams shattered, to the isolation and lack of support.  But there’s a hardship at the core of it all that I’ve never directly addressed: the struggle of living in a body that is the source of so much suffering.  It can be exhaustingly, relentlessly difficult. 

It’s important to acknowledge that there are many people far worse than me, particularly those too ill to even read these words.  I’ve now reached a point where I have times of symptomatic relief; times when I can enjoy life rather than just exist.  I will never not be grateful for this.  

Yet living in my own body continues to be the most enormous challenge.  There are the migraines that repeatedly floor me.  The bodily pain that at times reduces me to tears with its intensity.  The lights that swirl in my eyes, and the dizzy sensation of the blood having been drained from my body.  These are not just symptoms: they are part of the fabric of my life.  They are the demons around which I must constantly tiptoe; the trapdoors that open beneath me without warning. 

These are not just symptoms: they are part of the fabric of my life.  They are the demons around which I must constantly tiptoe; the trapdoors that open beneath me without warning

There’s often a deep stoicism in those of us who have known lengthy illness: a quiet acceptance of bodily suffering that conceals its true burden.  For our own survival, we’ve learnt to normalise feeling unwell.  We measure our symptoms not against the healthy body, but against its worst potential.  We think of the depths we once experienced, or how much worse we know it can get – and we tell ourselves that this is ok, really.  We can live with this. 

Having endured years of relentless physical agony, the load I carry today seems comparatively light.  This perspective allows me to make the most of my ongoing limitations, but at times can overshadow the very real burden that I continue to bear.  Because it is draining to exist in a body that revolts at light and sound and movement.  A body that collapses in response to company, exertion, environmental changes, routine viruses – even emotions.  A body capable of producing extremes of suffering, often for no discernible reason. 

There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present

My symptoms may no longer be continually active, but the potential for them remains a constant presence.  Those who see me at my laughing, smiling best could never imagine the delicate balancing act behind every moment.  The impossible decisions over what is too much or not enough; the silent background calculations as to how close I might be to collapse.  There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present. 

There is perhaps a reason why I’ve never publicly shared a piece like this before.  A cruel perception exists among some that the chronically ill – and particularly those of us with ME – are preoccupied with our own bodies.  The fear of being judged in this way has a tendency to silence healthy expression.  The truth is that, wherever possible, I place my focus on anything other than my condition.  But I cannot change the fact that I exist in a body that requires great reserves of mental energy.  Or the reality that when trust in one’s own body has been shattered, life will always have a hum of background fear.  Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear. 

Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear

Over time I’ve learnt to find peace in my enforced stillness.  On better days I can even find a poetic beauty in this life of quiet contemplation.  How lucky I am to watch the sky move through its many moods, and see the seasons transform the garden.  But joy is harder to hold onto on days when pain crushes me, or I feel too unwell to move.  Acknowledgment of that reality is important.  

Because no matter how I approach each day, I still live in a very ill body, and have done so since I was a child.  I deserve to honour that fact, along with the resilience that has allowed me to bear it for so long.  

Sometimes it simply needs to be said: being ill is hard.  

Image credit: Erik Mclean on Unsplash