33 years ago this week, I gave birth to our second child, a girl we named Helen Elizabeth. She was tiny, hated sleep, and always wanted to do what her elder brother did. She had two paces – run or carry me. When she didn’t get her way, she threw spectacular temper tantrums. She was the quirky kid who loved to wear odd socks (one bright pink, the other bright yellow). She organised the neighbourhood kids to wear black to attend the funeral of a pet mouse. She stood in front of the Lane Cove Community Orchestra as volunteer “conductor”. She sang, she danced, she played. She dreamed of going to NIDA.
But in her teens, things began to unravel. Following her brother to a selective high school, she excelled in the subjects she loved, but didn’t try in the ones that she found difficult. A for Art, D for Maths.
We tried a different school. She had days of exhaustion, headaches and “gluggy” throats. She sat down on the hockey field because she couldn’t stand any longer. Her beloved grandmother, my mother, died. She was robbed when attending the cinema in the city. We began the merry-go round of doctors. They recommended various medications and supplements – even a new pillow – but nothing changed.
Friends and colleagues had been suggesting she might have “Chronic Fatigue”. But I was a health professional; no daughter of mine would get such a way-out disease.
It was the early days of the Internet and I attended a course to learn how to use it. As an exercise, I searched for Chronic Fatigue. To my amazement, there were diagnostic criteria. And Helen had most of them.
After a few more doctors, we knew what we were dealing with (but were no wiser about how to deal with it). She wasn’t a malingerer; she wasn’t lazy. She wasn’t “just” depressed or anxious. She had Chronic Fatigue Syndrome, now usually referred to as ME/CFS – the ME standing for Myalgic Encephalomyelitis.
The diagnosis gave a sense of relief, but it didn’t end the merry-go round. In early 2001, CFS was still referred to as the yuppy flu. People had a rough idea what it was, but not many people knew anyone who had it. But everyone had a recommendation: acupuncture, naturopathy, various dietary manipulations, psychiatry, Buddhism, massage – the ideas were endless. When other parents complained that their kids were staying out late, we just wished our daughter was able to go out anywhere except medical appointments.
Eighteen years on, most people know someone who has had some sort of fatigue illness; some have recovered and others are still disabled after years or decades. The internet means that those who are housebound can still be part of an active community. Back then, doctors didn’t know what to do. To a certain extent, they still don’t. For years she has tried antidepressants, vitamin B12 injections, antibiotics, Chinese remedies, supplements. She still takes some. Are any of them better than snake oil? We will never know.
So in Carers Week 2017, we are still looking after our amazing quirky daughter. She has had periods of reasonable health. Although she didn’t finish school, she did a few subjects at Uni and lived independently for a while. She changed her name. But every recovery was followed by a relapse. Shortly after we downsized into a unit she needed to live with us again. My study became her bedroom. She is the shadow in our retirement.
We have pushed her in wheelchairs to galleries, cinemas and museums. She has watched her friends progress in their careers and their lives while she has missed out on parties, theatre, fun and relationships. In the early days we spent long nights fearing she would take her life, as so many with this illness do. As a family, we have moved from anger, through grief, to acceptance. But we have never lost hope.
Last year was better than this one – she could catch public transport. This year we are driving her again – or she takes a Uber. But she can shower herself and doesn’t need a wheelchair or a walking stick. She celebrated her 33rd birthday with a group of friends, but will pay for it with pain and fatigue for the next few days.
As well as Carers’ Week, this is the week that Jen Brea’s successful documentary Unrest will be shown in Sydney. And after years of despair, there is a feeling of hope in the ME/CFS community.
Although research funding remains miniscule, there is good evidence of altered exercise metabolism, changes to the microbiome, brain imaging and and inflammatory response. In Australia, the NHMRC is setting up an expert advisory committee, including a representative from the peak consumer body, Emerge. The National Institute of Health in the USA is spending more on research, and the UK PACE trial has been repudiated for its extremely bad science.
The new research may be too late for Jamie. But we hope she will be able to live independently, and not in poverty, when we are gone. We hope that she will find love. Whatever happens, she is our Wonder Woman.