‘Living with chronic fatigue: how I wish my friends would treat me’ | Daily Telegraph | 21 December 2015

From the Daily Telegraph, Lifestyle section, 21 December 2015. By Lucy Mayhew.

Bear Grylls and I have virtually nothing in common – the survival expert has a GTI turbo-charged body, whereas seven years ago, mine became my jailor.

Grylls recently name-checked kindness as an overlooked quality “critical to survival,” and in the midst of paralysing physical pain, fear and despair I have learned how true this observation is. But also, because compassion doesn't cure suffering, it is absurdly easy to neglect precisely when it is most urgently needed.

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 virtually all physical function and destroying my life.

There is no tidy diagnosis or cure for my complex immune and gastrointestinal condition. It has most in common with the severest cases of 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”.

A few weeks ago leading scientists around the world met at a global compassion conference in Shrewsbury where plans were unveiled for a new research institute dedicated to study and application of compassion.

The International Institute for the Study of Compassion has the support of Charles Darwin’s descendants. His great-great-granddaughter, Ruth Padel was at the conference where she spoke enthusiastically about the growing body of evidence that build’s on Darwin’s observations that compassionate behaviours are critical for human flourishing and even our very survival as a species.

Dr James Doty, a Stanford University neurosurgeon, also at the conference, highlighted research demonstrating compassion – and its kindred traits of understanding, kindness and connection – settles fear at a physiological level. My own experience attests to this. But I also know that our aversion to suffering leads us to denial – ‘she looks fine she must be just depressed’- or to reject, because we can’t stand to witness someone on a treadmill of suffering.

My circumstances are neither as cruel nor visible as those countless others are forced to endure. Nonetheless life has ceased to be life; rather it is an endless round of endurance I yearn to escape.

St Augustine said that physical pain was the greatest evil and he was right. I didn’t have a humour bypass or decide it might be diverting to become a hermit for almost a decade. I am extremely fond of life but this version needs returning to sender.

My illness has left me totally unable to speak due to a chronically sore throat. And the annihilating exhaustion which is impossible to describe, keeps me almost permanently in bed, often too weak to sit up. My gastric condition frequently delivers attacks which prevent eating for 17 days. I have cardiac and neurological symptoms and excruciating migraines but nothing breaks me like my seventy-two hour gut pain attacks which not even opiate pain medication can sate.

I have worked with practitioners of conventional, alternative and integrated medicine based on every continent bar Africa and encountered kind, bullying and indifferent consultants. I’ve taken cannabis juice, cannabis suppositories; undertaken stool transplants; been brought to my knees by the side-effects of conventional and holistic medications. I’ve seen shamans and charlatans; tried to invent past lives; get good at meditation and coax forth a belief in God or the power of my own mind in an attempt to heal myself.

Today I am sicker than ever and am currently casting about for viable medical help. Two things keep me going: stubborn determination that there is a path to recovery and savouring small gifts of compassion.

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.”

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

Loss of physical function is hell but acute pain takes you to hell’s basement where you doubt life, goodness and yourself. Alone, one employs legion strategies to keep buoyant. Nothing, however, is as effective as the faith drawn from another’s warmth – it wards off desolation and revives one’s resolve to keep fighting.

The reply I sent my friend was to urge her that her input is never without value. I explained that the single, stand-out moment of my seven year illness was last November. She was visiting on the third day of one of my suicide-inducing gastric pain attacks.

‘You came into my room,’ I wrote. ‘As I cried you hugged 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 vile this situation was, did more good than anything else could possibly have done. It didn’t stop the pain or 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 transcends pity. It’s love as understanding which is priceless.

Sometimes there are no viable suggestions but you can repeatedly let a person in distress know you are holding the space for brighter times for them. It never gets old or tired. It never becomes unnecessary. It can be spoken and unspoken — both is best.

Strip a person of everything they have and they will be left with two things — the instinct to survive, and the instinct of love, both given and received.

Philosopher A.C Grayling calls love ‘a baggy concept’, but its very roominess allows it to be expressed and experienced in a hundred different ways. Such caring does not require grand gestures, special gifts, and it doesn’t need to impinge on the day of a busy person, but it does need showing.

Eleanor Roosevelt also 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.

So whenever you might be faced with a situation where you feel useless, remind yourself this isn’t so. A legitimately frightened person knows they cannot look to another for rescue but they will be soothed, albeit imperceptibly, by small bids of solidarity. We may be unable to affect the outcome of a hellish circumstance, but the way it is experienced can always be altered and improved.

If a person is alive, they will still have hope because hope is an instinct. 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. Believe me.

Five practical ways to show compassion to someone who is continually ill

1. Be patient and constant: Like regular meals, a person in distress needs repeated comfort and, as time passes, that need intensifies. It is human nature to hold on to hope even when the outlook looks pretty futile; and to feel that someone else cares and is holding on too is a great tonic.

2. Share your life: Visits and phone-calls aren’t always possible but record a voice message on your smartphone or send a chatty email – these can light up the world for days. Don't worry how pedestrian or dull you think your news is because it's the inclusion – the human connection – that's cherished. Likewise an out of the blue, three-word text: ‘thinking of you,’ can really lift a pain-filled day.

3. Be sensitive: Us ill folk want to hear your happy news – engagements, pregnancies, career successes, as well as your problems, even if they seem trifling. A short simple acknowledgement of how hard it must also be to be denied the joys (and trials) of ordinary life, shows sensitivity that deeply nourishes.

4. Avoid belittling commentary: ‘I wish you’d try to overcome this depression; get some fresh air; ignore the pain. You certainly look well.' Implying this is a chosen circumstance that stems from weakness, lack of willpower and moral fibre, hurts. When quality of life is so diminished there is nothing one won't do to feel well.

5. Show you believe: Pain and poorly understood illnesses are frequently stigmatised and discredited. Simply naming the presence of suffering brings enormous relief, as does a sympathetic smile or hand on the arm. The confidence arising from your acknowledgement also provides space for lightness and laughter.