Screaming in silence: the plight of chronic disease sufferers

When government announced it would be providing free medicines for people suffering from myalgic encephaiomyelitis (ME) and fibromyalgia (FM), sufferers rejoiced because someone, finally, was starting to take their pain seriously.

It took years of silent suffering, doors slammed in their faces and campaigning before the state agreed to recognise ME and FM as chronic diseases.

Fibromyalgia is a chronic condition and people with it often describe symptoms of constant intense pain all over their body and a debilitating exhaustion that is not relieved by rest. FM sufferers report over 60 different symptoms.

The current method of diagnosis in Malta for FM is first by excluding any other possible condition through a serious of tests. According to sufferers, doctors “only proceed” to check the pressure points after all other tests result negative.

Even though ME and FM are not the same conditions, they do share many of the same symptoms, such as muscle and joint pain, chronic physical and/or mental exhaustion, cognitive dysfunction, digestive problems, depression, as well as the difficulty in breathing and heart problems, and many ME sufferers have Fibromyalgia as a symptom too. Also, just like FM, ME in Malta is diagnosed by exclusion.

Because of the symptoms, many a time sufferers are forced out of a job: the constant fatigue, the battle to even get out of bed or open a bottle of water, sees sufferers losing out on job opportunities.

We are judged simply by appearance. They think that if we look healthy, then we must be healthy.

Financial trouble becomes inevitable, with many finding themselves on the poverty line.

When government said it would recognise the illnesses as chronic diseases, sufferers breathed a sigh of relief, knowing this meant they could now be given much-needed access to social benefits.

But have things changed really changed for the sufferers since then?

In reply to questions by MaltaToday, the parliamentary secretariat for health said members of an ME/FM action committee are in the process of submitting their individual reports, highlighting the services that they will be offering in this regard.

“The Parliamentary Secretary for Health has a scheduled meeting with stakeholders in the coming days. The government is committed to improve the services offered by the state to the patients,” it said.

Rose* is a 54-year-old woman who has been suffering from FM for the past 15 years. For 35 years she worked in a highly professional job with a good pay and knew how to live a good life. But the illness forced her to resign from her job.

Now, she battles social services in the hope of receiving social benefits: medicines must be bought and bills must be paid.

Pills vary from €26.90 a box to €200, depending on the medication. There is no known cure, but certain medication can alleviate some of the symptoms. Rose explains how certain medication has helped her, but she cannot afford them any more: “I have to stop buying them now. How much longer will my savings last?”

Countless medicines sit on her table: inhalers for asthma, Telfast for urticaria – a result of the stress endured – painkillers and magnesium among others.

Because she moves less, due to this condition, Rose has gained weight but even when it comes to food, she has resorted to the basics. Sufferers should be on special diets, though these diets cost a lot more and she cannot afford it either.

“Fresh fruit, vegetables and fish cost money so I have to resort to the barest necessities,” she says, pointing out that weight problems could eventually also result in high levels of cholesterol and blood pressure.

When she was first affected by the symptoms 15 years ago, Rose did not even realise she was suffering from FM. She had injured herself while at work and thought that the pain she was feeling was simply the result of that injury.

But months later, the pain intensified, and she was diagnosed with fibromyalgia.

“The pain started increasing from the leg to the back and the neck. I couldn’t even open a bottle of water or hang a handkerchief on the washing line. Fortunately, my rheumatologist was one of the few doctors who believes in FM.”

One of the major obstacles ME and FM sufferers face are doctors who either misdiagnose their condition, or who simply refuse to see it as a genuine condition.

Despite a doctor’s report confirming Rose suffers from both FM and severe depression as a result of FM, social services still deem her fit for work.

“They even pass comments about me in front of me because I don’t appear ragged. They look at my polished nails or my hair and in their eyes I can clearly see that they’re judging me: they think I’m faking my condition. They don’t believe I need help because I’m well educated,” she says.

“What do I have to do to get attention? Should I hurt myself?”

For the first six months, Rose received her retributions but after that, they stopped. An applicant receives an invitation to appear again before a board which decides whether one is fit for work or not. The so-called arbitrator, Rose says, is not a doctor but a lawyer. 

“How can a lawyer know about FM when most doctors do not?” she says, exasperated. “We are judged simply by appearance. They think that if we look healthy, then we must be healthy. And each time I have to appear before a board to convince them otherwise.

“I am missing out on life because of my condition. And yet, I have to keep appearing before strangers who in turn judge me and look at me as if I were an imposter.”

Rose adds that in order to apply for retributions once again, she must continue getting the doctor’s blue certificate… once every week.

“I’m not entitled to an energy benefit because I don’t receive children’s allowance or supplementary allowance. Why does the state tell me to apply when it already knows I don’t have any kind of allowance?”

Feeling as if the state were taking her for a ride, Rose confesses that she is dreading the future.

“My parents are elderly and I have no one to take care of me. Sometimes I worry about how I’m going to pay the bills… other times I simply ask how am I going to survive.”

*Name has been changed to protect patient’s identity