They’re often misunderstood or derided, but simply getting out of bed in the morning is a monumental effort. Fiona Galea Debono speaks to sufferers of fibromyalgia
A fibromyalgia sufferer has claimed she cannot “risk” disclosing her condition to her employers and colleagues for fear of not being understood and losing her job.
The 46-year-old single mother of three asked to remain anonymous because she has to live a lie at work, ‘riding’ on back problems to justify her constant ill health.
Her silent disease, she feels, can be hidden behind a walking stick she uses at times to deal with her slip discs, masking the constant and inexplicable pain that fibromyalgia causes.
Fibromyalgia is defined as a condition that causes pain all over the body, as well as sleep problems, fatigue and often emotional and mental distress.
It comes with a whole array of other symptoms – in the woman’s case, deteriorated eyesight, a hearing impairment, hypersensitivity to sound and anxiety – with no logic behind them. But some can be established by tests, she said.
Speaking in the month that has just been dedicated to raising awareness on fibromyalgia and Myalgic Encephalomyelitis, Mary (not her real name), the sole breadwinner of her family, cannot afford to be misunderstood – just as doctors have been left baffled throughout her life.
While some have been supportive, others put the condition down to a fertile imagination.
In the end, an exasperated medic told her family: “You all need a holiday!”
Such is her experience of being accused of being a fusspot and a hypochondriac that even though she has no proof she would get fired and knows a plausible reason would be needed, she still fears she could be put under pressure to leave her job.
Mary has also been put off by the experiences of others, claiming they have withstood derision. She prefers to just say “fine” when asked how she is doing.
Most fibromyalgia sufferers are considered lazy, even when they are finally diagnosed following years of tests.
In reality, Mary manages to hold down her job – while fighting brain fog and panic attacks among the ailments that assail her – because she puts in much more effort, arriving home totally drained.
“I want to give my all,” she said.
“Ironically, we are hyperactive and perfectionists. But I wish I could work reduced hours,” she added.
Remote working due to COVID-19 has been a blessing and she has not taken any sick leave because she could cope better with her symptoms.
Hard as it may be to get to her workplace every day, Mary simply cannot quit, claiming she spends close to €300 on medication to fight the pain every time she visits the pharmacy.
The ME/CFS and Fibromyalgia Alliance Malta, of which Mary is a member, has been advocating for these illnesses to be recognised as invisible disabilities to allow sufferers more dignity.
Its president, Ruth Debono, said financial assistance would mean they could afford the constant medication and therapy they needed, while those who simply could not hold down a job would have benefits to fall back on and make ends meet.
Debono, 50, juggles her work as a sales executive, her studies to move on from her position, and motherhood, despite having fibromyalgia. But she questions whether she should really be classified as a ‘success story’ as she has been labelled.
The truth is, she may look normal, but most of the time she is crying alone.
Every day, although she wakes up like she has been hit by a bus, she gets dressed and wears make-up to look the part – and also mask the pain.
However, she does not hide her condition, even though people still look at their watch if she is a few minutes late, unable to fathom that she would have “surmounted a mountain” every morning to get there.
While she does not agree that sufferers should keep it a secret “because it is not something to be ashamed of”, she also acknowledges they can be bullied and judged.
“Fibromyalgia sufferers come across as idle and depressed,” Debono said.
“But no one wants to invent an illness to avoid doing anything. You may fake sickness for a week, but not for a whole lifetime.”
Some members do not even tell their husbands, Debono added, admitting things are not easy for their partners/carers either and that she gets by because her helpful husband takes over “impossible” chores like supermarket shopping, which leave her dizzy and nauseous.
She estimates that about 20 per cent of the alliance’s members are separated because of the strain of the illness on the couple. It’s not much fun, she says, to make plans and then wake up in the morning having to scrap them all.
“I feel like a burden on my children, and it is not fair for them. I am obsessed with my kids, but they require energy and strength that I do not have and need to be able to take care of myself.
“Our food gets burnt regularly because of brain fog. I forget recipes and the most logical things, and I cannot drive at night.”
900 known sufferers
An average four to six per cent of each population is said to suffer from fibromyalgia, and most of these are female, according to Fibromyalgia Alliance Malta PRO Becky Camilleri, who has both ME and fibromyalgia.
In Malta, the figure stands at 900, but the NGO claims it is conservative because many patients are not – or wrongly – diagnosed.
It also maintains that up to half of sufferers are unable to work, while the rest are barely able to hold down a job, let alone advance to any success.
“Our inspirational story is simply getting out of bed in the morning at times,” Camilleri said.
“We are too sick to climb any metaphorical – or physical – ladder.”