Who Are The “Millions Missing?” Mary-Anne And Lynda’s Story
Trigger Warning: Suicide
The “Millions Missing” are people across the world whose lives have been changed irrevocably by Myalgic Encephalomyelitis (known as ME or ME/CFS). This severely disabling neuro-immune disease can lead to the loss of so much quality of life which others take for granted. They often exist housebound in darkened rooms, so invisible to the outside world that people don’t know they exist, let alone believe their illness is real. For the families it is just as devastating and isolating, with some fracturing and disappearing altogether. With better recognition, funding, support and treatment this cruel existence would be more tolerable. This is what the #MillionsMissing global campaign for health equality aims to achieve. Without these there is often family trauma, needless suffering and even tragedy. Their carers are no exception. Emerge Australia’s Health and Well Being Survey found 90% of carers were financially unsupported and only 5% of people with ME had paid carers. Carers more generally have been found to have the lowest level of wellbeing of any population group.
Mary-Anne and her beloved daughter Lynda are two of the Millions Missing. Lynda’s life with ME and fibromyalgia was one of ever-increasing pain and depression, and eventually total dependence on her mother. She had exhausted all avenues for the help she needed, both from doctors and from social services, despite being an experienced social worker herself. She had fought hard to keep her job, but after extended periods of leave her health eventually forced her to quit. The final straw for Lynda was being denied help to shower and dress her, because her mother was there at home when she was assessed. Lynda took her own life on 4th January 2014 at the age of only 33. It cut very deep indeed, knowing that my own son, who has ME, could one day face a similar situation, and all too aware that suicide is probably the most common cause of death in people with ME. It is hard to hear and harder to speak about, but their lives must not be in vain.
Mary-Anne cared for her daughter alone, a single mum, also looking after her frail-aged parents in their Sydney home, as well as trying to hold down a full-time job at TAFE to pay the bills. She had a vivacious, fun- loving personality, and was a very kind friend to me, always offering support to my son. But caring took its toll. She was constantly anxious and exhausted. Worse, she was criticised for her daughter's deteriorating health. Lynda's suffering and depression was compounded by doctors and by her psychiatrist, who didn't help. Mary-Anne’s pleas to warn him of her concerns for her daughter’s mental health were ignored. She had no legal rights over her as an adult.
Mary-Anne’s grief was in measure with her boundless love for her daughter. Her last words to me, as she was dying from an aggressive cancer in March last year, aged only 64, were to tell everyone about Lynda and to keep fighting for the recognition and support that people with ME and their carers desperately need. They may both be missing, but they won’t be forgotten.
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