Q&A with Alice Hattrick, author of Ill Feelings, by Roisin McLaughlin-Dowd
It’s been a little bit quiet around here for a while, but pleased to introduce October’s Hysterical Women Book of the Month, Ill Feelings by Alice Hattrick.
Blending memoir, medical history, biography and literary non-fiction, Ill Feelings explores the experiences of Alice and their mother after both being diagnosed with ME. As well as uncovering both of their case histories, it branches out into the records of ill health that women have written about in diaries and letters – including Virginia Woolf and Alice James, the poets Elizabeth Barrett Browning and Emily Dickinson, John Ruskin’s lost love Rose la Touche, the artist Louise Bourgeois and the nurse Florence Nightingale.
RMD: What do you see as the main issues with the way the medical profession treats people with ME?
AH: My mother and I were treated with mistrust – both separately and in relation to one another, and that goes for the medical profession but also other institutions.
I saw this reflected in culture more broadly. As I say in the book, I knew more about how derided the diagnosis was than the diagnosis itself. I wanted to go through that history, to work out what had happened to create this widespread distrust. I knew it had something to do with femininity and family ties being considered inherently untrustworthy in culture, but it was also useful to dismiss us – to tell us we were trouble, rather than change the system we were troubling.
What drew you to selecting the sick women writers you talk about in Ill Feelings?
When I read Alice James’s diary and letters, in which she describes encounters with doctors as well as her physical sensations and illness, I saw so many overlaps with my and my mother’s experiences. It was written in the 19th century but we were treated much the same way – except we weren’t well off so we couldn’t pay for experimental treatments like she did.
She also has this fantastic line, which always seemed to sum up how I was feeling about illness in general while working on the book, and which I used as the epitaph: ‘How well one has to be — to be ill!’ It means a lot to me because it has all these layers to it: how people think illness is a kind of choice (especially one made by women and girls), almost a lifestyle choice, or a means of opting out of obligations, but also how much illness costs you – financially and emotionally and physically.
It can feel like an overwhelming amount of loss being ill. You can’t work (or work as much), you lose relationships, your social life suffers – and they’re the kind of losses that could only be faced if you were well. It’s this awful bind – that if only you were well enough, maybe you could cope with being ill. Admitting that it’s impossible – being well enough to be ill – can be a relief.
I looked to the diaries of people like Louise Bourgeois and Virginia Woolf and Alice James and Susan Sontag hoping to find something of my own experience – at first because I couldn’t really verbalise it. My mother always said I refused to talk to doctors about how I was feeling (that I was ‘basically furious’) and I think reading these accounts – mostly unpublished in their lifetimes – permitted me to do the same, to write in a private way that could record my day-to-day sensations and feelings without the need for them to make total sense or conform to any particular way of speaking or writing. Bourgeois literally said: ‘and what’s the use of talking, if you already know that others don’t feel what you feel?’
The resonances between the treatment of the women in history and your own experiences today were a strong through line in the book. Why do you think so much has stayed the same over the past 150 or so years?
There are still no treatments, or even a biomarker for ME, and the ones that do exist can be dangerous, and are based on an idea of illness as a behaviour rather than a health problem. These are things like graded exercise therapy and CBT for erroneous beliefs, which for a long time were the only treatments advised by the (now outdated but not officially revised) NICE treatment guidelines for the illness. These were tested as part of the publicly-funded PACE trial, which mis-reported positive results for these treatments.
The new NICE guidelines have still not been published, and there have been so many problems with the process, so now they’re basically saying: if there aren’t any treatments that are evidence based, what are we guiding on? This lack of evidence and lack of options mean you end up with a diagnosis and no course of action, and a lack of change. Patients have to be their own advocates, their own researchers.
I was particularly interested in the chapters on biobanks, and on researchers communicating with each other. Do you have any hopes for the future of ME understanding and treatment after talking to the researchers?
There are studies happening, such as Decode ME. A lot of work has been done by patients themselves – in activism but also research and journalism. There are important lessons that can be learnt from the past but there needs to be more research, more understanding and awareness. I hope more than anything that we can imagine our future differently, one in which people with disabilities and chronic illnesses are not blamed and will live in a way in which ableism doesn’t impact them so much.
When Long Covid became a public talking point during the pandemic, how did that affect your writing of this book?
Interestingly, the lockdowns last year enabled me to finish the book, in that I had more time and energy because I didn’t have to travel and could do all of my other work from home. But it also made the whole thing come together for me, the reasons why our stories are important.
There was a strong sense early on that there was going to be a second pandemic of post-viral fatigue and lingering symptoms, which we are seeing now in the statistics, and also concern that people with this kind of chronic illness were going to be treated in much the same way as people with ME/CFS, fibromyalgia, and other ‘unexplained’ illnesses. So it became very prescient, and allowed me to bring the narrative right up to the present.
What do you hope readers take away from the book?
I hope people who have had similar experiences can feel validated and heard; that it’s okay to feel conflicted about having any kind of chronic illness that means we live with limitations and experience ableism in many contexts and within families, including internalised ableism. I’ve tried to articulate that complexity by weaving personal experience with historical narratives, to make sense of our own feelings about illness. I hope that speaks to many more people than those that have similar ill feelings too – that it can contribute to a discourse around gender and politics.
You can find Alice on Instagram @AliceHattrick
Buy Ill Feelings at Bookshop.org*:
*Affiliate link – Hysterical Women is not for profit; the commission I receive from any sales helps to fund paid guest posts by writers from marginalised and under-represented backgrounds.