A Living Death

Writer Karen Harradine writes movingly about her experience of living with the debilitating, and much misunderstood, condition of Myalgic Encephalomyelitis (ME).

A GP once told me that a diagnosis of myalgic encephalomyelitis (ME/CFS) is given when doctors can’t figure out what is wrong with you. This doesn’t invoke much confidence in ever recovering from this insidious illness.   

ME is woefully under-researched and under-funded. Sufferers often have a worse quality of life than cancer patients. A specialist in AIDS, who also treats ME patients, once said that if she was given the choice between having HIV or ME she would always choose HIV. For good reason too. Suicide is ME’s worst symptom. And its only cure.

ME is often described as a living death. We exist in a strange twilight world of neither living or dying.

We dwell in limbo, this land of the living dead, where sleep brings nothing but debilitation, where capillary bleeds behind the eyes are a common occurrence, digestive issues, oral thrush and migraines a regular event. Extreme sensitivity to smell, light, cold, heat and sound, nerves which misfire at any given moment, exercise induced fatigue and flu-like symptoms make daily life impossible to navigate.

We are the missing millions, desperate and suffering from decades of medical neglect, sometimes bedbound, often housebound, many of us too sick to work properly but not sick enough to qualify for state assistance. A compromised immune system is part of this daunting ME path. I have lost count of how many viruses, colds and infections I have had in the almost fourteen years of enduring this illness.

The incessant physical and mental fatigue is soul crushing, the latter far worse, especially for writers like me. Words, a writer’s currency, have a habit of disappearing from my mind a few seconds after they have formed. I have learned to patiently wait for these intellectual jewels to appear again, grinding my teeth in frustration as my exhausted brain slows my writing output to an agonising pace.

No doctor ever warned me about the endless dental issues, the hair loss and the deep anxiety which accompanies ME. I was always a nervous person but ME has emboldened anxiety, and its twin sidekicks of fear and panic. Like evil spirits waiting to pounce, these prowl through my mind almost constantly, taunting me with horror visions of the future.

Depression robs you of joy, anxiety robs you of hope. How can you have faith in futureland if it’s fraught with a thousand things which can go wrong? This fear is rooted in stark reality. A thousand things have already gone wrong.

I was married a year before I got sick, so my husband William has only really known me ill. Our collective earning potential has been decimated by ME. I fear deeply for my future without him. I am vulnerable because my ability to earn my own living was demolished overnight by this illness. Futureland terrorises me, haunting me with an avalanche of pain and struggle.

William calls me the ‘what if woman’. My fear and panic overrides any mature common sense and I ask him questions like:

‘What if you die and then I am made homeless? What if I eat this chicken and get food poisoning? What if I am bed bound again and never recover?’

If someone sneezes or coughs near me my entire body stiffens with fear, as I know my propensity to catch whatever is being spluttering into the ether. And the subsequent long and painful recovery process afterwards. I make crucial decisions daily to preserve what is left of my health, planning out each task meticulously, building in rest periods and sometimes neglecting messages from forever patient friends because my priority that day is to change the bed linen and that will eat up my remaining energy resources.

I need to do enough activities so my brain and body don’t atrophy. But I have to ensure I don’t over-do it and risk propelling myself into sepsis, like I did twice last year. A tough balance to get right. No wonder my anxiety is off the charts, hampered by my ME body’s intolerance to chemical medicines needed to ward off this menace.

So instead I practice mantras of gratitude, a magical spell woven to cast out dark shadows. And then I remember.

I say their names in an invocation of honour and respect:  Esther, Lucy, Caroline, Grace, the forgotten women of the Apartheid South Africa I grew up in. Their lives decimated by racism and drudgery, these strong women were separated from their children and husbands for months while they worked as maids in white only suburbs. Their collective hardship was far worse than anything I endure.

I remember a story written by the late AA Gill, about an African migrant in London who was so lonely she visited soup kitchens for company. Not even the aloneness I feel from being ill can ever match that extent of distressing loneliness. When my face is swollen and distorted with fatigue and pain, and I lament my image in the mirror, I recall a news report about a boy in a forsaken Johannesburg township, weeping in his grandmother’s arms after learning that the surgery to fix his deformed head had been cancelled.

I cry for those injured by life, the discarded and the collateral damaged. Their suffering serves as a metaphorical slap in my face. I don’t negate my own suffering, for to do so is to diminish it and jeopardise healing. But remembering them all puts my illness and anxiety into perspective, and, in the words of my husband I then ‘man up’ and banish my self-pity. For despite it all I am so lucky.

From touching death a few times now I am in awe of my flawed body’s ability to heal, even imperfectly. I am alive, I can walk, I can function well enough to write. I have love, friends, food, shelter.

ME hasn’t robbed me of my ability to laugh or to travel. Somehow, inexplicably, I have lived on four different continents during my life. Even though the writing process is fraught with challenges for me I never lose the thrill of seeing my work published.

Not one night passes that I don’t pray to G-d, thanking Him for all that is wonderful in my life and asking only for only good days ahead. This connection with G-d brings me resilience and joy.

Even though I have ME I am still me. I am stronger than my worst symptom, braver than any extreme anxiety.

Karen Harradine

Photo by Juan Pablo Serrano Arenas from Pexels