Brayden

Brayden, in his early 30s, was a fit and active person until about 10 years ago, when a bout of flu – or what he thought was flu – changed his life.

‘I just kept getting more and more pain and brain fogged and fatigued,’ he recalled. ‘And at first I thought it was sleep, so I went to a sleep centre to get treated. They treated my sleep apnoea, but I was still tired after that. And then they treated the delayed sleep phase but, yeah, I was still kind of fatigued and sore and everything after that.’

He wondered if he might have chronic fatigue syndrome, and was referred to a clinic that treated it.

‘Unfortunately, that wasn’t a very good experience.’

Brayden was diagnosed with myalgic encephalomyelitis (ME), which his doctor at the clinic understood as a mental illness. Treatment there and at the clinic Brayden went to next involved a lot of ‘probing’, with endless questions and psychological testing.

‘I guess they see it as a conversion disorder or a somatisation disorder, where they think that you have unhelpful thoughts running through your head that’s making you sick, even though you might not have that,’ Brayden said.

Brayden had been seeing a psychologist before he got ME, for help managing issues from his past. His psychologist had told him he didn’t need to see her any more. He was ‘pretty stable’, she said. But his treating team at the clinic didn’t agree.

‘They were like, “Well, all this past trauma that you thought that you were over and you’ve worked through with your psychologist, we believe this is why you're sick,”’ Brayden said.

He found their attitude ‘re-traumatising’.

‘It’s not patient-focussed. It’s based on patient blaming. So rather than working with the patient and finding out what the issues are … it comes from a thing where they believe that you want to be unwell or you're faking it or you're some type of hypochondriac, kind of, making it up for some secondary benefit.’

Brayden was prescribed medications and a program of graded physical activity that made his condition much worse. He experienced a lot of ‘gaslighting’ and ‘victim blaming’, he said.

 ‘You're made to disbelieve yourself. Everything they say is true, and any experience that you have, even though you might be saying, “Look, I'm getting worse. I can’t keep doing this,” they’ll tell you, “Well, no. That’s – that’s wrong. You just think it’s worse.”’

Brayden now cannot leave the house and is unable to work.

After several applications he was recently approved for NDIS funding. The funding is not for ME, which the NDIS considers a health issue, but for his mental health, which has deteriorated over his years of struggle to get help with ME. The funding cannot be used for equipment or therapies that would reduce the impact of ME.

Brayden said the widespread misunderstanding of ME needs to be corrected with better education and training.

‘There needs to be more input from people with the condition, and … people with lived experience.’

He compares his experience with that of a cancer patient who decides to stop chemotherapy because it makes them feel too unwell.

‘You don’t then have a doctor saying, “Well, no. You’ve got to keep doing chemo, otherwise I'm not going to give you any treatment or DSP or anything like that.” With ME, it's like, “Look, I can’t do graded exercise. I've done it three times. Each time I've done it, it’s made me worse.” But then they say, “Well, you need to keep doing it or you're not going to get your benefits or NDIS or anything else.”’

‘So there needs to be more education for doctors and specialists on how to treat the illness properly than just keep pushing this gaslighted narrative of … “It’s all in their head. They just want to be sick.”’