The ME, CFS and Fibromyalgia Alliance Malta has released a series of comics depicting the realities of living with invisible illnesses and how finding help to deal with the condition can sometimes be insurmountable.
Depicting scenes that show how ordinary tasks, like grocery shopping, starting a career or even arriving at a correct diagnosis, come with extra challenges when suffering from an invisible illness, the NGO, together with the Malta Trust Foundation and the University of Dundee, developed the comic to raise more awareness and reach people who may be suffering in solitude.
“This is a first for Malta and we sincerely hope it will help families, children and schools to understand what their loved ones may be going through,” spokesperson Rebecca Camilleri told Times of Malta.
“It is about our daily life experiences and what we go through, like how going grocery shopping might affect the rest of your day or how it is sometimes hard to find support from doctors.
“We want people to know that they are not alone and that many of us have gone through the same experiences.”
The comic is available to download for free in Maltese and English and will be released in print later this year.
While to the outside world people living with conditions like fibromyalgia and myalgic encephalomyelitis may appear fine, they are often dealing with issues like chronic pain and sensitivity and the impact this has on sufferers’ ability to work and lead a normal life, alliance president Ruth DeBono said.
One such issue, she noted, is the medication prescribed through the government formulary.
While it may be standard to prescribe drugs like pregabalin, which is used to treat nerve pain, the public healthcare system does not take into account the fact that many living with such conditions have chemical sensitivities which may trigger further flare-ups.
“What we as an NGO are asking is to move away from a one-size-fits-all treatment for fibromyalgia and ME and towards a tailor-made care plan for every patient,” she said.
“If you are committed to helping all fibromyalgia patients and not just a percentage of them you have to seriously consider that not everyone can take the medication available through POYC and it leaves people in the lurch and unable to make use of government incentives to find a treatment that works for them.”
Every doctor should have a basic understanding of what ME and fibromyalgia is
DeBono proposed that authorities should consider allowing the allocated budget to include alternative treatments, such as therapy or vitamins, for fibromyalgia and ME sufferers on a case-by-case basis.
“If we really want to help everybody, consultants should be able to choose the right medication for their patients and ensure that it is accessible.”
DeBono also said that a bigger effort must be made to ensure that doctors are better informed of the conditions and strive to adopt standard diagnostic criteria to avoid misdiagnosis.
“Every doctor should have a basic understanding of what ME and fibromyalgia is because you never know when you’re going to see a patient who keeps bouncing from doctor to doctor only to keep getting told it’s growing pains,” she said.
“It took me 25 years to get a diagnosis, which is no joke. I was questioning my mental health, people just thought I was lazy or depressed. That’s no way to live.”
See the English version of the comic Fibromyalgia and Us here and the Maltese version here.