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MALTATODAY 16 April 2023

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6 maltatoday | SUNDAY • 16 APRIL 2023 NEWS A couple of years ago, in the midst of the pandemic, people every- where were forced to live a muted life, mostly behind closed doors. Between escaping on social me- dia, 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 rou- tine. Several fibromyalgia and my- algic encephalomyelitis (ME) sufferers sat down with me to re- count what it feels like living with "a body allergic to life." Fibromyalgia is a chronic con- dition that causes widespread muscle pain and tenderness. It is often accompanied by fa- tigue, altered sleep, cognitive impairment – such as difficulty remembering things – and emo- tional distress. Not all fibromyalgia sufferers are diagnosed with ME and while both diseases have a lot of symp- toms in common, each one has distinguishing symptoms that help tell them apart. ME is more often tied to im- mune-system abnormalities and more severe neurological issues than fibromyalgia. "It feels close to death," Rebecca explains better. She has been di- agnosed with both diseases for a couple of 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 mo- ment she forces herself to pro- ceed in what is normal mundane activity, she has to rest again to restore her energy. "Each day I fight my body to simply get out of bed and then scared stiff I plan how to go gro- cery 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 liv- ing 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 a full-time job, 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 sclero- sis, 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 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 disa- bled, 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 con- sidered as disabilities. Conflicting views Speaking in parliament earlier this year, Labour MP Randolph De Battista urged the government to consider fibromyalgia a disa- bility 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 im- agine waking up every morning with every part of your body hurt- ing and unable to do basic things. It is time to understand this con- dition better," the MP said. Advocates in countries such as the UK, Israel and Canada are al- so calling for fibromyalgia to be considered a disability. Nationalist MP Alex Borg has also raised the plight of fibromy- algia 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 parlia- ment," Borg says. However, the stumbling block appears to be the conflicting opinions among healthcare pro- fessionals on the true nature of fibromyalgia. Not all doctors consider fibromyalgia a disabling illness. A 2020 study among health professionals from different spe- cialties of the public health ser- vice from the Spanish province of Almería found that a high percentage of professionals considered fibromyalgia as a psychogenic condition – pain associated with psychological disorders. Malta has 1,727 persons suffer- ing from fibromyalgia, and eight suffering from myalgic enceph- alomyelitis. 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 al- liance representing fibromyalgia and ME sufferers, is able to work reduced hours despite her condi- tion. But she admits living with anky- losing spondylitis, an inflamma- tory disease that can cause some of the bones in the spine to fuse, and fibromyalgia sometimes feels like a curse. Ruth says it is akin to having a life sentence, which many do not understand, including the gov- Fibromyalgia 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 Living with a body allergic to life Labour MP Randolph De Battista (left) and Nationalist MP Alex Borg (below)

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