Feeling powerless in the face of another’s unsolvable suffering can lead us to turn away but actually you can always, always help

When illness and incapacity lead to despair, fear and overwhelm compassion can seem weak but actually it is the most practical, potent tonic.

by Lucy Mayhew

Seven years ago all semblance of functional life was eviscerated when my health collapsed. I am wary of outlining my circumstances because someone wise once told me humans can’t deal with more than three lines of self-pity without the counter-balance of some kind of redemptive conclusion. My story does not provide that.

There is no headline-grabbing drama or bravery to my ongoing battle to regain my life; no against-the-odds happy ending and the breakdown of my body is internal so it doesn’t yield any attention grabbing pictures. But I ask you to read on because if you have ever felt helpless in the face of another’s messy suffering your distress at their distress will likely lead you to forget the potently powerfully way you can alter their situation for the better even when you can’t fix it.

In 2008 I was in my twenties living in London leading a busy, fulfilling life working as a journalist, surrounded by a large circle of friends. Then an atomic bomb exploded wiping out every aspect of physical function and destroying my life.

There is no tidy diagnosis and no cure for my complex immune and gastrointestinal condition. It has most in common with severe Chronic Fatigue Syndrome where, as immunologist and AIDS and CFS specialist Dr Nancy Klimas explains, “patients experience a level of disability equal to that of patients with late-stage AIDS.”

Spring 2008 — A photo taken days before my health collapsed and life as a human able to ‘be’ in the world, ended.

My circumstances are not nearly as raw, cruel and visible as those that countless others are forced to endure. Nonetheless life has ceased to be life; rather it is an endless round of endurance which I yearn to escape.

St Augustine said that physical pain was the greatest evil and he was right. My illness has left me totally unable to speak due to a chronically sore throat. And the unnatural and annihilating exhaustion which I am powerless to describe keeps me almost permanently in bed often too weak to even hold up my head up to drink water. More days than not my gastric condition delivers a maddeningly distressing attack which means I can not eat for 17 hours at a time. Migraines paralyse and reduce me to a moaning animal. But nothing breaks me like a round of seventy two hours in the torture chamber of one of my gut pain attacks which not even opiate pain medication can to touch.

When life rams us up against the most uncomfortable truth — that control is an illusion — the fear it engenders is smothering. And no matter how deep our concern for another’s suffering their infectious fear and desperation is as repellent as an explosion of sulphuric acid.

But, as Bear Grylls, said recently, kindness is an overlooked quality that is actually “critical to survival.” Research by neuroscientists in leading medical schools across the world confirm compassion and its kindred traits of understanding, kindness and connection, physiologically and psychologically settle fear.

In the midst of paralysing physical pain, fear and despair I have learnt how true both these conclusions are. But because these deceptively fluffy, nebulous virtues don’t cure suffering it is absurdly easy to neglect compassion when it is most urgently needed. If compassion was so easy to deploy researchers from a huge range of medical disciplines would not be channelling their expertise into better understanding and applying it.

Last week, in response to sharing my current state, my dearest friend emailed,

“Nothing to say as all words, advice or sympathy from all parties are useless at this stage, but thanks for the update nonetheless.”

I have been gifted with a fair amount of determination. If there is a way I can recover my precious life I will find it. But living a hermetic and silent life I need human contact in the form of compassion, comfort and kindness, now more than ever. This requires the sharing of some of that repellent despair and knowing that those that care for me, think well of my determined spirit and are still holding on to hope for better as well.

My friend is not callous, we adore each other and she wants me well, but as Dr James Doty, neurosurgeon at Stanford University concedes, being “truly compassionate when someone is suffering takes an immense amount of strength.”

I am sharing my reply because if you have ever felt drained by someone else’s pain I urge you not to walk away. It may seem paradoxical but in such instances compassion truly is the most practical tonic you can offer.

Here is my reply.

That is so wrong. The single stand out moment for me in this whole seven year illness was last November when I was on the third day of another agonizing, suicide-inducing pain attack and beside myself with intolerable pain and stupefying fear.

You were visiting and came into my room; as I cried you hugged and held me and said you knew what a huge amount I had done and how endlessly hard I had been trying to find a path back to health. That explicit recognition of the breadth and depth of my delving and the connected salute to how unfair and vile this situation is, did more good than anything else could possibly have done. It meant everything. It didn’t stop the pain. It didn’t banish the fear but it helped. A lot. It’s what people mean when they talk about bearing testimony to a person’s suffering. It’s love as understanding which is priceless. It does not help in the way we want. It will not alter a situation which seems ineffably cruel and frightening but it always helps and it is always remembered.

Alain de Boton ‘Why you are anxious all the time’ The Philosophers’ Mail

Sometimes there is no advice. Sometimes there are no viable suggestions but there is always love, compassion and sympathy. You can always let a person in distress know that you are holding the space for brighter times for them. You can repeatedly let them know that you are steadfastly and continually wishing better for them too. It never gets old or tired. And it never becomes unnecessary. It can be spoken and unspoken — both is best. What it really, really needs is repeating.

Just as much as we need regular meals, a person in distress needs repeated comfort and, as time passes, that need intensifies. Because when a person is in hell they are holding on to a hope that they probably know looks pretty bloody futile but they still hold on to it; and to feel that someone who cares for them is holding on too matters — more than I can say.

Long before this illness, I held on to the truth that compassion and empathy are the most crucial qualities a person can show and endeavour to cultivate. I only learn and appreciate this more and more as I progress through a life that gets more reduced and harder and harder to bear. Because, strip a person of everything they have and they will be left with two things — the instinct to survive, which is an animal reflex and the instinct of love both given and received. Love, may be, as philosopher A.C Grayling says, ‘a baggy concept’, but it also has a hundred different faces, meaning it can be offered and experienced in a hundred different ways.

Even before this illness I used to say that, because man is not telepathic, kindness, warmth and generosity need to be demonstrated. Such caring does not require a grand gesture, or a bought gift, nor does it need to impinge greatly on the day of a busy person, but it does need to be shown. And the reward for cherishing and offering it more and more, is a growing recognition and appreciation of how many small and simple ways it manifests.

This is not a pompous plea, nor, I hope, patronising lofty advice but it is important stuff.

Eleanor Roosevelt suggested the shortness of life meant it was a good idea to learn from other people’s mistakes. So I am sharing these hard-learned, unoriginal reflections in case some of their sentiment might imprint and suffuse where pithier, more eloquent words may only fleetingly register.

Whenever you might be faced with a situation in which you feel useless, whenever you might have cause to doubt that something as simple and apparently ineffectual as a kind word, gesture or look could have anything but the most paltry and fleeting effect, remind yourself this isn’t so.

A legitimately frightened person knows they can not look to another for rescue but they will be soothed, albeit imperceptibly and not as much as both of you would wish, by small bids of solidarity. Such actions may not change the outcome of a hellish circumstance but it does change how it is experienced. And to alter, even minutely, the experience of a perhaps unbearably tough situation, is both all and everything we can do and freely give.

I think offering continual love to someone whose journey of hardship is especially long is hardest because it calls for constancy and fortitude in the face of something that is hard to look at for an interminably long time. But this is also true — the longer a person’s suffering continues the greater the need to feel still loved, still cared for, still supported because they will find their own inescapable despair and fear just as repugnant as you.

I know it’s hard to see a person hopeless but if a person is alive they will still have hope because hope is an instinct. However, illogical, even the condemned man being marched to his execution has hope of a last minute reprieve; so if he knows that someone else also holds that hope, and, at the very least, wishes the circumstances were different, that helps; so much.”