By David Tuller, DrPH
It is hard enough to write when youâ€™re feeling healthy. So Iâ€™m in awe of people who manage to write despite suffering from a debilitating chronic illnessâ€”especially one that messes around with cognitive functioning. That number includes some ME patients who have written novels. (I don’t write fiction; I have a hard enough time keeping up with real life.)
Alicia Butcher Ehrhardt and Nasim Marie Jafry have both accomplished this impressive feat–their novels, respectively, are Pride’s Children PURGATORY and The State of Me (links are to Amazon.com). Both books feature a sympathetic central character who struggles with her illness. The portrayals clearly draw credibility and granularity from the authors’ own intimate engagement with the issue.
Iâ€™ve asked these authors to offer some thoughts on their books.
Alicia Butcher Ehrhardt
Raw material is limited for those who have zero energy – but Iâ€™ve found that being open to the emotional rollercoaster that having a chronic disease puts you on has its own primordial goo: just recently, battling a patch of the kind of brain fog that makes doing almost anything a challenge, I went through a microcosm of emotions, including fear, envy, frustration, despair, emotional lability, joy, and triumph. If I pay attention, these can be gifted to a character just as much as if Iâ€™d achieved them by quenching a deadly fire or having my first opera produced.
That is the essence of writing: making a reader feel. One of my aims is to make you live as a person with ME/CFS along with one of my three main characters, thinking and feeling with her as she fights for a real life. My â€˜process’–refined since I started writing the Prideâ€™s Children mainstream trilogy in 2000–consists of extreme plotting, plus a very detailed gathering of the material considered for each scene, and waiting for those moments when my brain is on and hot, so the mixture reaches the melting point in a crucible and I can cast the amalgam into an ingot of words.
What is the trilogy about? PURGATORY: A disabled reclusive writer struggles to bury her obsession for a rising movie star in the sights of a beautiful young actress. NETHERWORLD: A powerful actorâ€™s friend offers her support when he gets caught in a destructive relationship. LIMBO: A reluctant secret wife risks forever losing her famous husbandâ€™s trust and love to protect his unborn children–from their mother.
Prideâ€™s Children PURGATORY is already available here. NETHERWORLD is almost ready for publication. LIMBO is fully plotted and in rough draft.
Nasim Marie Jafry
It can still shock me, the memory of illness punching into my life in 1982, when I was eighteen. Iâ€™d just gone to live in France as part of my undergraduate degree. Unfortunately, I had picked up Coxsackie b4 virus, most likely while waitressing that summer in my hometown in west of Scotland. I never recovered and was diagnosed with severe ME in early 1984 by a consultant neurologist who had a research interest in the disease.
I had never heard of Coxsackie or ME. I remain ill today.
Undoubtedly, the suffering of this illness has been made worse by a clique of influential UK psychiatrists who have caused untold harm by willfully conflating ME with idiopathic â€˜chronic fatigueâ€™ since the late 80s/early 90s. They insist–without a scrap of reliable evidence–that ME is perpetuated by unhelpful beliefs. The unhelpful beliefs are, of course, their own.
My 2008 novel, The State of Me, spans fifteen years: 1983 to 1998. This was pre-PACE trial and the hell that that circus has unleashed, but much of the novel still resonates today. I consciously fictionalised my experience of illness. Truth comes more easily as fiction. And there is black humour to balance the grimness of the illness.
The State of Me puns on three levels. Firstly, the phrase refers to our statelessness–we are patients in exile, we belong nowhere. The illness has been land-grabbed politically and clinically. Secondly, it also refers to the poor state of research–ME is the orphan of the research world and has been catastrophically underfunded. Finally, it refers to the well-worn saying: â€˜Look at the state of me!â€™.
I will never forgive those doctors – and their cheerleaders – for imposing their beliefs on this patient population in such a cavalier, punitive way. Their control of the narrative has demonstrably served them well in their careers, but it has been utterly detrimental to ME sufferers.
We do not know if long covid is the same as ME but long covid has thrown ME into sharp relief, simply by sheer force of numbers. It was possible to largely ignore ME patients for decades but it is not possible to ignore a pandemic of postviral patients.
There are, happily, dedicated ME research scientists, globally, who display integrity in their pursuit of truth. That gives me hope. Though hope has been very hard to come by with the recent debacle involving the UKâ€™s National Institute of Clinical Excellence (NICE).
NICEâ€™s 2007 guideline for the illness–which promoted graded exercise and cognitive behaviour therapy as primary treatments and was unfit for purpose–has just been overhauled and a new guideline published after a series of tedious delays. While the publication–a reversal of past harms–should be welcome news, there has been predictable stamping of feet and irresponsible commentary from those in the establishment who should know better. It is truly hard to tell if these clinicians are merely stupid or simply spiteful.
Still, I sincerely hope no other eighteen-year-old being diagnosed with ME today will remain ill into their late fifties, as I have done.
(The State of Me is available here.)