Gabrielle Jackson - Pain and Prejudice: How the Medical System Ignores Women—And What We Can Do About It

Some names and identifying details have been changed to protect the privacy of individuals.

Copyright 2021 by Gabrielle Jackson

Published by Greystone Books in the United States and Canada in 2021

First published by Allen & Unwin in Australia in 2019

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All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, without the prior written consent of the publisher or a licence from The Canadian Copyright Licensing Agency (Access Copyright). For a copyright licence, visit accesscopyright.ca or call toll free to 1-800-893-5777.

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Cataloguing data available from Library and Archives Canada

ISBN 978-1-77164-716-8 (pbk.)

ISBN 978-1-77164-717-5 (epub)

Editing by Kelly Fagan and Angela Handley (original edition) and Jennifer Croll (Greystone edition)

Copyediting by Kate Goldsworthy (original edition) and Jennifer Stewart (Greystone edition)

Proofreading by Jennifer Stewart

Illustrations on pages 21, 22, 33, 37, 40, 48 and 188 by Ngaio Parr

Typesetting by Midland Typesetting and Fiona Siu

Cover design by Fiona Siu

Extracts from Andrew Scull, Hysteria: The disturbing history, Oxford University Press: Oxford, UK, 2009, are reproduced with permission of the licensor through PLSclear.

Extracts from Sander L. Gilman, Helen King, Roy Porter, G.S. Rousseau and Elaine Showalter, Hysteria Beyond Freud, University of California Press: Berkeley and Los Angeles, CA, 1993, reproduced by permission of University of California Press and Copyright Clearance Center.

Extract from Lisa Jensen, Covid-19 support group: Long-haul Covid, Body Politic Covid-19 Support Group Newsletter, 18 August 2020, reproduced with permission.

Greystone Books gratefully acknowledges the Musqueam, Squamish, and Tsleil-Waututh peoples on whose land our office is located.

Greystone Books thanks the Canada Council for the Arts, the British Columbia Arts Council, the Province of British Columbia through the Book Publishing Tax Credit, and the Government of Canada for supporting our publishing activities.

I was watching my young nieces swimming lesson when the familiar pain hit. It began with the usual ache in the gut that travelled down my legs and up my back but became sharp so quickly I doubled over. I felt beads of sweat accumulate at my temples and under my arms. A weakness overcame me and I knew I had to get to the toilet fast. After telling my sister I didnt feel well, I hobbled off to the public bathroom. I didnt have any painkillers on me and the nausea just got worse. I sat on the toilet bent in half at the waist. I had diarrhoea but it didnt make me feel better. I was sweating a lot.

My nieces lesson finished. She and my sister showered, changed, ate a snack and were ready to go. My sister was calling for me. I hobbled out of the cubicle, trying not to worry anyone. I vomited in the carpark and held back tears. The pain was so severe, I could barely talk to answer my sisters questions.

At her place she gave me some painkillers and prepared a hot water bottle for me as I vomited again in the toilet. She rang our mum for advice and kept asking me, What can I do? But there was nothing she could do. Being at her house was at least better than having to lie down in a public bathroom alone.

Now I never leave home without a bag filled with painkillers, anti-inflammatories, and drugs to prevent abdominal cramping, nausea and diarrhoea. Ive grown used to the sudden onset of overwhelming pain and nausea, and the embarrassment that causes. Ive become expert at pinpointing the exact moment I need to get homewhen the beads of sweat begin to form at my temples, under my arms and at the base of my spine. Around the same time, a weakness in my legs gives way to stabbing pains in my lower abdomen. When that happens, I know I have half an hour to take some painkillers and anti-nausea drugs, fill a hot water bottle and be still.

If I cant get home in time, things can get ugly.

I have a disease that I know nothing about.

I thought I knew everything, or at least a lot about itbut that turned out to be very far from the truth and also very bad for my health.

That was the first sentence of a feature I wrote for The Guardian about having endometriosis. I was 38 and had suffered with various health problems since my teens. Id always thought of myself as weak; I was jealous of the energy my friends could muster. I knew I had a disease but didnt want to be seen as sickI didnt want to be a whinger or thought of as no fun. At some point I normalised most of my pain, and I believed my constant back and hip aches were the result of a skiing accident Id had at 19.

But if I was cursed with endometriosis, I was blessed with a cheery disposition and an almost pathological optimism. This enabled the central paradox of my life. I was never one to suffer in silence; people close to me knew of my ongoing physical ailments while having little comprehension of their emotional toll. Like me, my loved ones didnt ascribe all my loud complaints to the burden of a chronic disease. I gave myself the title of hypochondriac before it could become a complaint whispered behind my back.

I lived in cycles. For months at a time Id be incredibly busy with work and social commitments, then Id become exhausted: in intense physical pain, emotional and always on the verge of tears. During these periods, I locked myself away at home, took long baths and lots of painkillers, and fortified my body and mind for the next cycle. My only excuse was, Im just so tired.

After one particularly bad flare-upin which Id spent the 2014 Christmas holiday period in bed with my best friend, the hot water bottleI heard about a patient-centred endometriosis conference run by the advocacy group EndoActive. I got myself a ticket.

One crisp day the following May in a University of Sydney auditorium, I learnt for the first time that all the things wrong with methe period pain, leg pain, back pain, hip pain, shooting pains up my rectum and vagina, bloating, nausea, diarrhoea, stomach upsets, dizziness, and the oh-so-debilitating fatiguewere common symptoms of endometriosis. I also heard of adenomyosis for the first time, a disease I was diagnosed with later that year. I cried and I cried and I cried. For most of my life Id doubted myself, feeling second-rate, weak and flaky, only to realise... I wasnt. I had to reimagine myself, and it wasnt easy.

I told my editor at The Guardian, Emily Wilson (now editor of New Scientist), I wanted to write about endometriosis. She could barely believe the statistics: one in ten women of reproductive age have the disease. Thats 176 million women worldwide. Sufferers are routinely told by healthcare professionals that pregnancy or hysterectomy are curestheyre not. In fact, theres no known cause or cure.

Medical professionals often dismiss sufferers as being difficult rather than ill. One gynaecologist wrote about how the disease can be cured by stress management because only type A personalities get it. Another gynaecologist wondered aloud to a researcher, Do mad people get endo or does endo make you mad? Its probably a bit of both, he concluded. An anaesthetist told a pain seminar that women with treatment-resistant endo have probably been sexually abused and need to see a psychiatrist. The disease is funded at around 5 per cent of the rate of funding for diabetes although it affects about the same number of women and costs the economy more; and the personal financial cost is exorbitantunlike for diabetes, which has many affordable treatment options. Figures in 2018 were remarkably similar in Australia, the US and UK.