By Josh Timewell.

“For me, when I first got sick it was in 2011. I got really really unwell, I was really fatigued, like random bouts of nausea. All these really weird symptoms that didn’t add up to anything. Until I eventually collapsed one night.”

Meredith Hall, then 18, would drag herself to the bathroom and take some medicine, but she would barely feel an improvement.

Following a trip to the hospital, Meredith was diagnosed with glandular fever, to her relief.

“No big deal, I’m sick, I’ll get over it.”

For the next year, however, she was constantly tired.

“Whenever I would get sick it would be for a week or two and I was knocked out. Much more than anyone else.”

After visits to multiple doctors and specialists, she was told that she had chronic fatigue.

“I kept going to doctors and they kept telling me whenever I got sick that it’s a virus, you just have to wait it out, but I thought I can’t be waiting two weeks out of every month. That’s not a life.”

Meredith kept looking for an explanation to her puzzling symptoms, eventually booking an appointment at the Monash Fibromyalgia Clinic.

“Finally I was told yep, you’re dealing with fibro and that’s probably causing the majority of your problems.”

Meredith is referring to a condition called fibromyalgia (fibro for short), which affects 2-5% of the population in developed countries. It it characterised by a whole host of symptoms, but mainly extreme fatigue, cognitive problems, decreased pain threshold and increased responsiveness to stimuli, such as light or heat.

Mainly impacting young to middle aged women, it is one of Australia’s most commonly unnoticed invisible illnesses, as people affected, whilst dealing with extreme symptoms, often show nothing on the outside.

With no simple blood test type method to diagnose the condition, and no cure, fibromyalgia presents itself differently in different people. Sufferers can normally recall a “trigger” moment, an event where their body was impacted heavily. For most it is a long bout of an illness, or a psychological, or stressful event.

As a result, many of the people suffering with the condition often deal with mental health issues, as many of their symptoms are left without acknowledgement and treatment. Not only is it difficult for doctors to diagnose, but they often attempt to treat the external, accompanying symptoms, without looking to the root cause of the illness. This can cause enormous emotional strain and frustration for sufferers, as they feel they have to, in some cases, plead their case until more investigation follows.

Luigia Calvisi is the head of Fibromyalgia Support Australia, a group she created to allow sufferers of the condition to share their experiences and provide support in numbers. The group’s Facebook page has over 16,000 members, with numbers growing every year.

Diagnosed with fibromyalgia in the 1990s, Luigia has dedicated years to supporting others and raising awareness, in order to help defeat what she believes is a great stigma that sufferers face.

“Doctors and nurses do not want to hear you. They know best. It doesn’t matter that I’ve been living with my body and I know wrong. They’re very hard to deal with.

“You’re treated like a second class citizen.”

She says that the majority of doctors are not equipped with the skills to be able to deal with a condition like fibro, leaving sufferers to search for doctors that will take them seriously.

“When I was in the hospital last time and I had my supplements, I had a doctor looking after me and he was only quite young. And he turned to me and he said ‘you’re lucky that I even believe you’. I was lucky but I shouldn’t have had to have been.

“I had to find a doctor that believed it.”

Luigia is now in her early sixties and already in retirement, due to the condition of her body. She is forced to use a walking stick and has to use a scooter if travelling long distances.

Dr Emma Guimer is the head of the Fibromyalgia Clinic at Monash Medical Centre, Melbourne. Along with Dr Geoffrey Littlejohn, they are arguably the most informed fibromyalgia specialists in Australia. They pioneer research into the field, and have various publications that share information and references to the medical world.

Dr Littlejohn says the pathway for diagnosis is difficult, because different issues tend to lead patients to the respective specialists. He says that the issue is not to do with doctors not believing patients, and that they attempt to treat patients based on their symptoms.

“When the patient is first presenting to the general practitioner or to any other health practitioner, they might be presenting just with some symptoms, not the whole lot of symptoms. So a lot of people who end up with aches and pains might go to a physiotherapist, or a chiropractor, massage therapist, and that person deals with the other symptoms that are presented perhaps.

“Other people with fatigue might go to another doctor thinking they have some sort of chronic viral infection and might get tested for that, or concentration problems and might end up at a neurologist. Depending on the symptoms that are dominating, people might go to different doctors and each of those therapists might focus just on the symptoms initially before they look at the bigger picture as the fibromyalgia picture.”

He also acknowledges the need for more resources and funding into the field, which would help to provide better ongoing support for sufferers of the condition.

“There have been many studies to show that there is a higher cost in regards to medical costs and increased rates of presentees not working to their full ability and increased rates of not being able to work. Increased rates of disability support pensions et cetera.

“The impact of both chronic hepatitis and fibromyalgia is very high. I think it just happens now that with hepatitis there are drugs that can cure the problem. So the government says that’s something black and white and objective that we can do. Whereas with fibromyalgia there’s no curative drugs, therefore whoever is talking to the government might have difficulty telling them where they money is going to go to and the outcomes it’s going to achieve.

“There is a bit of a negative approach to fibromyalgia from many medical people. There is a drug called Milnacipran, that in Australia, that drug has been approved by the TGA for treatment of fibromyalgia but the drug wasn’t placed on the PDS to allow people to access the drug. So it’s the only drug that’s been approved for fibromyalgia and yet when it went to the PDS for funding support, they rejected it. I don’t know what the reason would be. It could be seen as something to costly for them because there are a lot of people with fibromyalgia. It get’s complex in this situation.

“A better appreciation of the problem and its high impact is imperative.”

Dr Guymer reflects the opinion of Dr Littlejohn, with a large emphasis on the mental health side of the condition and the psychological effect on patients. For those lucky enough to be diagnosed correctly, with mental health in mind, the only support is a mental health plan including five free psychologist appointments per year.

“There are not enough psychologists, there is not enough access, there’s not enough money in that and I think psychology is important and also demystifying it a bit. When I say to someone ‘I want you to see a pain management psychologist,’ I hear ‘Why? There’s nothing wrong with me. There’s nothing wrong with my brain. You’re telling me it’s all in my head.’

“It’s like, no, it’s that stigma thing that they feel, and it’s an older generation sort of thing, younger people are better at getting what we mean by talking to a psychologist. It’s more about learning techniques and strategies for dealing with what you’re going through, rather than I’m dumping this ‘crazy’ stamp on you, get out of my office and I want the next person with a real condition thanks. It’s not that at all. I think educating people and de-stigmatising psychology too because it’s such a powerful tool and we really could be using it in a much better way.

“These people are very good as disassembling, so they go to work and they act happy and bubbly and then they get home and they just fall apart.”

She highlights the difficulty for government in when allocating funding towards specific illness.

“Fibromyalgia is such a huge social burden and it costs society a lot of money in sick time and lost productivity and medical treatment. But then on the other hand you’ve got someone with a super duper rare but always fatal cancer.

“I mean how are you going to balance all of that? I find that while it’s easy to rail at the government for not spending enough money, how do you prioritise? I mean that’s fine, the greater good for the greater number, fantastic, but if you’re the person with your kid with this rare and absolutely fatal disease, then that’s not going to ring true to you.”

Another strong aspect of those suffering from chronic illnesses, along with the emotional toll, is the financial struggle. Data from the Australian Institute of Health and Welfare, that indicates those suffering from chronic illnesses take on average twice as much sick leave as their healthy counterparts. Thus the financial toll is immense, with government support and healthcare benefits often not covering many of the costs.

The Fibromyalgia Support Australia community provided an insight into living with the condition, with over 40 responses.

It seems that sufferers accept the fact that the condition, at this stage, is not curable. What they seek, however, is an acknowledgement that their condition is painful and real.

For those new sufferers like Meredith Hall, who have to live with this debilitating condition, it is comforting to know support and recognition is growing. It does, unfortunately, still have a long way to go, when it comes to both the funding and diagnosis for this large percentage of the community.

Cheryl Walters was diagnosed with fibro nine years ago and provided a powerful anecdote, exemplifying the battle faced every day by these people.

“I remember telling my brother about being diagnosed and he responded ‘so what, l have had a sore knee for six months’. I have never spoken about it to him again.

“Unless l had fibro there is no way l would be able to fathom how dreadful this condition is and how it shuts you and your world down. It is incredibly lonely and isolating.”

Currently the waiting list at the Monash Fibromyalgia Clinic is more than one year. Check out the Department of Health guide on managing chronic disease here.