Living with a body allergic to life

Fibromyalgia and myalgic encephalomyelitis sufferers tell MARIANNA CALLEJA how it feels to live with a body that is constantly in pain and why it would benefit them to have the disease considered a disability

A couple of years ago, in the midst of the pandemic, people everywhere were forced to live a muted life, mostly behind closed doors.

Between escaping on social media, hitting the Netflix button for a series marathon or escaping to Tinder for a quick chat, most of us coped. Perhaps we knew that someday everything will return to normal and this hope enabled us to cope.

For people living with certain disabilities, however, that muted life was simply their normal routine.

Several fibromyalgia and myalgic encephalomyelitis (ME) sufferers sat down with me to recount what it feels like living with “a body allergic to life.”

Fibromyalgia is a chronic disease that causes widespread muscle pain and tenderness. It is often accompanied by fatigue, altered sleep, cognitive impairment – such as difficulty remembering things – and emotional distress.

Not all fibromyalgia sufferers are diagnosed with ME and while both diseases have a lot of symptoms in common, each one has distinguishing symptoms that help tell them apart.

ME is more often tied to immune-system abnormalities and more severe neurological issues than fibromyalgia.

“It feels close to death,” Rebecca explains better. She has been diagnosed with both diseases for over 10 years now.

Every day, fibromyalgia and ME sufferers are faced with painful encounters. They wake up in fear of when will they push themselves too far before falling paralysed and not coming out of it.

She explains to me how living with ME is like having your body in constant hibernation. The moment she forces herself to proceed in what is normal mundane activity, she has to rest again to restore some of her energy.

“Each day I fight my body to simply get out of bed and then scared stiff I plan how to go grocery shopping, cook or simply go to the bathroom,” Rebecca says. “I am even running out of clothes! I don’t have the energy to go to the washing machine, it’s too tiring.”

Rebecca explains how she has now lost all her ambitions and dreams. Locked in her house and cut off from society, she has given up on her childhood dreams of studying, owning a business and being an independent woman.

“All this because at age 17 I got glandular fever and my body went downhill ever since. At age 39, I have nothing,” she says. “I am living off pity and charity, where is the pride in that? I want a chance to do something. Be proud of my life instead of waiting home to die.”

Rebecca’s disease means she cannot work, and qualifying for social assistance means she has to live by herself because fibromyalgia and ME are not recognised as disabilities.

She recalls how when she faints out of weakness, she wakes up alone, in an empty house.

“Our quality of life, according to studies, can be far worse than most cancers, multiple sclerosis, schizophrenia and more. Yet we are not seen or heard,” she laments.

The only options for people with severe fibromyalgia and ME are social assistance and sickness assistance.

Social assistance is temporary financial help with regulations so strict it forces people back to work.

If the person qualifies for this aid, they cannot live with another person with a stable income; they cannot go on holidays or engage in entertainment but worst of all, they cannot take on a side job to boost income.

Such help is good for people who have been temporarily disabled, but for people with chronic illnesses, which get worse over time, this is not a solution but a prison sentence, Rebecca says.

“In the past, we were kept out of view by the family; now we are being kept out of view by the government,” she adds, calling for fibromyalgia and ME to be considered as disabilities.

Conflicting views

Speaking in parliament earlier this year, Labour MP Randolph De Battista urged the government to consider fibromyalgia a disability to enable sufferers to have access to more services that could make their lives easier.

“These people are often labelled lazy or attention seekers but imagine waking up every morning with every part of your body hurting and unable to do basic things. It is time to understand this disease better,” the MP said.

Advocates in countries such as the UK, Israel and Canada are also calling for fibromyalgia to be considered a disability.

Nationalist MP Alex Borg has also raised the plight of fibromyalgia sufferers in parliament and agrees with De Battista’s call. Borg also points out that in Gozo, fibromyalgia sufferers do not have access to services provided in Malta either.

“Together with another MP, I am exploring every option to bring this discussion to parliament,” Borg says.

However, the stumbling block appears to be the conflicting opinions among healthcare professionals on the true nature of fibromyalgia and ME as not all doctors consider them disabling illnesses.

A 2020 study among health professionals from different specialities of the public health service from the Spanish province of Almería found that a high percentage of professionals considered fibromyalgia as a psychogenic disease – pain associated with psychological disorders.

Malta has 1,727 persons suffering from fibromyalgia, and eight suffering from myalgic encephalomyelitis. Of these, 520 are provided with medical services from the Floriana Health Centre’s fibromyalgia clinic, data obtained from the Health Ministry shows.

A brave face, a broken body

Ruth DeBono, who heads the alliance representing fibromyalgia and ME sufferers, is able to work reduced hours despite her disease.

But she admits living with ankylosing spondylitis, an inflammatory disease that can cause some of the bones in the spine to fuse, and fibromyalgia sometimes feels like a curse.

Ruth DeBono, who heads the alliance representing fibromyalgia and ME sufferers
Ruth DeBono, who heads the alliance representing fibromyalgia and ME sufferers

Ruth says it is akin to having a life sentence, which many do not understand, including the government.

While Rebecca cannot wear cosmetics, and certain clothing because of allergic reactions, Ruth can put on a brave face, apply some lipstick and hit the street as a business to business retailer.

“Looking well while living with a broken body is not easy and I can be easily misjudged by those who expect us to remain enclosed in our homes, dressed in pyjamas since in their head, being sick and disabled, means being constantly miserable and unable to perform,” Ruth tells me.

Yet Ruth feels like she is hanging on to “a resemblance of a normal life”.

Behind closed doors, Ruth, like Rebecca, spends hours resting to compensate for an hour’s work.

She recalls how a modern woman, returns home after work to cook, clean, play with her children while preparing for work the next day. But for Ruth, her disability means she returns home crushed by pain and fatigue.

“We cry in pain wanting to scream our unlucky fate to the world, yet have to remain strong for our loved ones,” she says.

And if she wakes up sicker than the night before, Ruth, like other fibromyalgia sufferers, needs to think twice before calling in sick for fear she would be judged.

“Looking normal is a curse… We need to work to sustain ourselves financially but we also need help to be able to work,” Ruth says.

This is why Ruth, Rebecca and other fibromyalgia and ME sufferers are seeking disability recognition. Such recognition would help with therapy, medication, alternative solutions which would improve their lives.

“We seek recognition because we deserve to be recognised because we too are citizens of this country,” Ruth insists. Hers is a call to be given a chance to live with dignity.

Fibromyalgia services

Service for fibromyalgia sufferers is available from Floriana Health Centre. The clinic is open every Friday with clinic opening times alternating between 1pm to 5pm and 2pm to 6pm.

Patients suffering from fibromyalgia are followed-up by general practitioners with special interest in fibromyalgia.

Appointments to this clinic are referred only from Mater Dei’s consultant rheumatologist.

As it stands, Malta has 1,727 persons suffering from fibromyalgia, and eight suffering from myalgic encephalomyelitis. Of these, 520 are provided with services from Floriana Health Centre’s fibromyalgia clinic.

Additionally, the government offers three medications — Amitriptyline 10mg and 25mg tablets, Pregabalin 75mg, 150mg, and 300mg capsules, and Tramadol 50mg capsules — free of charge to those with fibromyalgia