Talking about my eating disorder took me years, even after fully recovering.

I was painfully aware of the stigma and misconceptions about the illness, and how they were in contrast with my very real experiences.

My issues with eating had begun in my teens.

I was starting a new school and everyone was growing, or stumbling, from childhood to early adulthood. Everything was changing around me, and the world I knew was spinning out of my control.

Eating, the ordinary everyday routine, was something I could control, and from control came a feeling of safety, something I longed for in the midst of change.

That’s how anorexia crept into my life, or took over it, and it took me years of intensive treatment to get through. Because I was in Finland, where the public health care system offered good, unlimited treatment, my family did not have to go bankrupt.

Without the treatment I don’t know where I would be, or if I’d be at all.

In Australia, people suffering from eating disorders gained a small victory this month after years of lobbying from families and advocacy groups like the Butterfly Foundation.

From November 1, Medicare rebates for eating disorders changed from 10 to up to 60 sessions per year, and include 40 psychological sessions and 20 sessions with a dietitian. The change was celebrated as long overdue, but has also raised questions among people familiar with the illness.

Linda’s daughter Kate fell ill when she was 13 (names have been changed for privacy reasons).

Linda had noticed something was wrong, and after contacting an eating disorder helpline she was directed to a GP with Kate. As for many seeking help to an eating disorder, the first response was the same one I initially had got years ago too.

Not sick enough.

Linda recalls the visit: “They made her fill out this stupid questionnaire, to try assess her. How can they think that someone with an eating disorder would answer that honestly? So she didn’t fill the criteria.”

Disappointed by the public system, after some searching Linda found a private practitioner, someone specialised in eating disorders and family-based treatment. They started seeing her as a family, and later Kate by herself, now for almost eight years.

These sessions cost them $150 per session, with private health cover giving a rebate on 10 of them. She says they have had periods where Kate saw the therapist twice a week.

“You can do the math on how much that is in a year.”

Recovery time for people who do get better is measured in years, or often decades. The previous policy – where Medicare covered 10 sessions per year – shows how terribly misunderstood and researched these illnesses are.

Linda says that if they had not found someone who was familiar with treating the illness and were able to pay for it, Kate would have ended up in the hospital.

Not that that would have been of help either. She says the stories of people getting turned away from emergency rooms or of nursing staff not knowing what to do were way too common.

“I still cannot believe how inadequate the education of the people in the medical profession regarding eating disorders is. It was a lucky draw to find a good therapist because you could go to see three before you find one that works.”

She welcomes the new Medicare plan but worries how it will be executed if GPs or other professionals cannot even accurately assess or recognise the illness, let alone know how to treat it.

She also fears the rebates will leave out many sufferers.

She says Kate’s illness is chronic. She thinks many with a chronic eating disorder – but who have managed to restore a healthy weight – won’t qualify for treatment, despite still being seriously ill.

This taps into the biggest misconceptions about eating disorders. A focus on the physical symptoms makes us forget that this is really a mental illness, where issues with eating are a symptom, not the cause. Treatment often stops or becomes less intensive after a healthy weight is gained.

This is where the real struggle for patients starts, when to the outside world they seem to be doing well yet inside a constant battle with the illness and its control continues.

Less publicised eating disorders like bulimia or BED (binge eating disorder) might not show clear physical symptoms at all.

Eating disorders are among the hardest of mental illnesses to treat, with everyone’s reasons for getting ill being so personal and often long-rooted. The idea of eating disorders being vain, selfish illnesses for teenage girls unsure of themselves is false and misrepresentative.

Anorexia has the highest mortality rate of all mental illnesses, with 20 per cent dying in 20 years. A growing number of men are struggling too.

There is another group of people Linda fears might miss out on treatment.

“If you’re not well down the track in your illness you are not going to qualify for this. Waiting till you meet the criteria and then getting attention is just mind-blowing to me.”

Multiple studies show that early intervention is the best and fastest way to recovery, yet the system seems to work in reverse. Families like Linda’s are often left with a choice where the options are to wait and watch their loved one get sicker or hope to find a way to pay for private treatment.

“If you have cancer I can’t say to you, ‘Can you please come back when you’re stage four?’,” she says with anger in her voice.

The lack of available advice on treatment and support for carers helped forge creation of Eating Disorder Families Australia, a non-profit organisation that organises events and has a closed Facebook page where people can discuss eating disorders and get help and advice, or just be heard by people who understand.

Linda and her husband have been volunteers in the organisation for a few years and say it has truly opened their eyes to the suffering of families let down by the public system.

She says she hopes that more than anything, the new Medicare plan will raise awareness and create more education and knowledge about the illnesses in the medical field. Awareness might also in itself help more people seek treatment earlier.

Linda thinks training to treat and assess eating disorders in the medical field should be a priority, especially with GPs since they are often the first point of contact for patients. The criteria for eating disorders is very black and white, when most patients fall into some areas of grey.

For me, therapy worked for the simple reason that my therapist understood both me and my illness and helped create distance between the two. When I talked about the irrational things anorexia was telling me, she understood because she had had years of experience and training in the field.

I didn’t feel crazy or alone anymore.

It is incomprehensible that anyone struggling with a mental condition in Australia would have to go to the doctor to explain their illness or justify their need for treatment, after already taking the biggest step of seeking help into something that is impossible to overcome alone.

Full recovery from eating disorders is possible, but in order to get there, people seeking help need to be heard, believed and above all, understood, both in a medical and human level.

If you need help call Lifeline on 13 11 14 or The Butterfly Foundation on 1800 44 33 4673