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Written by Bethany Freeman

Inga is a 28-year-old ME/CFS sufferer from Sydney. She has a double degree, a Bachelor of Advanced Science and a Bachelor of Arts with majors in chemistry and French – she still has hopes of being a researcher in chemistry. She was accepted into a Talented Students Program to do research-based subjects, and then accepted into a paid internship after she finished university. She’s currently working on a stop-motion paper animation aimed at educating people about chronic illness.

That sounds great on paper. I doubt you’d see her as a lazy person, as someone who isn’t driven, who’s just out to take advantage of the hardworking people of the world to lie around, doing nothing. If you met her, she’d probably look fine too. You would probably see her as hardworking and academic. Those are the qualities she prides herself on.

Inga was still studying when she got sick. She developed myalgic encephalomyelitis/chronic fatigue syndrome, although she didn’t know it at the time. It was a long time before she would receive a diagnosis. Even then, it was only because she knew someone with ME/CFS and eventually saw a neurologist who understood that was the cause. Before that, she just knew she was sick, really sick.

After a year and a half, she was able to try to complete her degree although she was forced to cut it down to the bare minimum – just one subject per semester. Against the odds she finished in 2017 and received her internship through a Melbourne organisation called the Australian Network on Disability, determined not to let her illness keep her down. Even though they were flexible and understanding, it was just too much. Inga’s body was broken. Nobody had told her it was essential to rest properly, and she crashed. After just four weeks of the internship she realised that she couldn’t continue.

She hasn’t been able to work or study since.

One of the hardest things for Inga is that people always ask ‘Oh, what do you do?’. She didn’t realise how much emphasis lay on our career as defining our identity. She has never been able to work in a full-time job and because people don’t understand or know much about ME/CFS, she doesn’t know how to answer the question. 

For Inga the powerlessness is the worst. She wishes that society understood her illness the way people understand other conditions. She often doesn’t even have the energy to explain to people what life’s like living with ME/CFS because it’s so complex.

Coming from a scientific background, she values knowledge and rational understanding, and she hopes that increases in scientific knowledge will bring greater public awareness and a decrease in stigma. A diagnostic test would help hugely to remove the harmful misunderstanding that this illness is psychosomatic. But right now, it’s a catch 22 – you need diagnostic proof that it’s real to make the government feel justified in providing significant funding for medical research, yet you need the initial funding to develop a diagnostic test. We need to cross this impasse.

Inga knows that she had to give up her dreams because she is sick. She knows how hard she tried, that she is not lazy. But it’s hard for her to remember this when society constantly gives her a different, crueler message. The idea that she’s somehow ‘faking it’ hurts her because she spent her whole life working hard and has defined herself by her drive.

To have people see her as someone who is lazy is incredibly upsetting because that’s not who she is.

Inga would like to tell the people who say those with ME/CFS are just lying around doing nothing about the person she was before she got sick, and how she was anything but lazy when the illness hit. She wants to say how it goes against everything that she wants to be. That there are so many things she wants to do, but it’s impossible to do them. That it takes away her choice.

She misses having the ability to concentrate fully on something and be engrossed in it. She gets so painfully bored, it’s one of the things she finds the hardest. If she tries to do more, she crashes and pays for it. She tries so hard to strike a balance between rest and activities, but with the tricky symptoms and harsh payback of the illness, she hasn’t been able to find one. She loved studying. It was part of how she related to the world and how she defined herself. It’s very hard to find a replacement for that – ME/CFS takes away your identity.

Inga was briefly on the Disability Support Pension (DSP), but when she decided to move in with her boyfriend, it was cut off. They’ve lived together on a single wage for two years. She’s now completely financially dependent on him, which complicates a new relationship. It’s hard for him to carry all the responsibilities and pressures that come with that. It also takes away her independence, financially and personally.

There’s a lot of people who she’s drifted away from because she couldn’t go to their party or catch up with them. Some friends have been very understanding and that means a lot to her. She just wants people to remember that it’s often an invisible illness, so even if she looks completely fine, she may actually be falling apart. She wants to tell people if she can’t make it to something, it’s not because she didn’t want to go, her body just didn’t allow it.

But it’s more than just social stigma. Inga, like many people with ME/CFS, has had bad experiences with doctors not believing her symptoms are real. She says, ‘I hate the thought that people think I’m exaggerating or lying because it runs so strongly against my character. It really gets to me. It makes me feel angry and helpless. I would give EVERYTHING to be able to work, be a research scientist, complete an honours degree. That’s all I want to do.’

The paper stop-motion animation she is making is called An Existence Project and is about ME/CFS. For the past three years, she’s slowly worked on it when her health allows. It’s aimed at communicating what it’s like to live with the illness. She’s hoping it will be a tool that people with ME/CFS can use to explain their illness to family, friends and colleagues. Using a visual medium will hopefully make the issues more memorable and emotionally tangible.

ME/CFS has impacted every aspect of Inga’s life. It has altered her whole sense of what she thought her life would be like and she is forced to look at everything she does now through the lens of illness. She cannot live spontaneously – everything must be planned. She is one of the millions missing.

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