In today’s post, CR Byrne draws on her experience to explore how Australia’s welfare system creates barriers to support for people with chronic illness and disability. CR Byrne is an activist and photographer.

I’ve been sick for 7 years, since 2015 when I had both Influenza B and Epstein Barr Virus (glandular fever) within the same year. I continued to work and study at university for the next year, but my health was declining. I was becoming more fatigued trying to push through it, and having more frequent crashes and symptom flare ups. I feel as though I never fully recovered from the two viruses, with the symptoms resembling flu like symptoms.

In 2016 I was studying science, hoping to become an ecologist, and was going to pair it with my love of photography. I was halfway through my degree when I stopped being able to attend classes because of brain fog fatigue and flu-like symptoms including headaches, muscle aches, chronic pain, and shortness of breath.

For 6 months I lived on Youth Allowance, but as I was unable to return to university in 2017, I was obligated to do a work for the dole program in order to keep accessing Centrelink payments. Still, I was excited and hopeful that my illness would subside. For six months I worked at the Youth Arts and Recreation Centre for 3 hours a day, 3 days a week. I loved it, but gradually my health deteriorated until I was bedridden. In 2018 I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndroms (ME/CFS) and had a small period of rest. Still optimistic I tried studying again, returning to my fine arts degree for two semesters part-time trying to balance my health with my ambitions. It was a real struggle to complete and by the end I was bedridden.

In late 2019, depressed about my condition, I moved to the mainland for a change in weather. But I struggled to live independently and my health worsened. I looked into applying for the Disability Support Pension (DSP), and was told I needed three consecutive medical certificates before I could even apply. I also needed a diagnosis from a specialist that I could not afford, so I had to return to Tasmania.

In 2020, COVID-19 happened, and the Jobseeker payment was increased. This helped me put away some funds to see a specialist. I was told by my GP that there was only doctor specialising in ME/CFS but he was soon retiring. The ME community in Hobart advised me to see Greg Schwartz who had special knowledge and a holistic approach to treating and managing symptoms of ME/CFS.

In early 2021 I saw Greg Schwartz multiple times, where he confirmed my diagnosis of ME/CFS and stated so in a detailed letter of my condition, addressed to Centrelink. By this time the COVID Supplement had stopped, and I had used all of my savings to see Greg Schwartz.

In 2021 I attended a minimum of 12 appointments with my two GPs, a Clinical Psychologist, and a Social Worker at Centrelink, in order to collect the information required to prove I was eligible for the DSP. It takes me around 2 weeks to return to the energy levels I had prior to the appointments, which means that for 24 weeks of the year I had no social interaction, no human touch, all while managing weekly activities and duties in order to survive.

I officially applied for the DSP in October 2021. The application was difficult to do on my own with my ME symptoms, particularly brain fog. Months later Centrelink denied my application, stating that Greg Schwartz wasn't considered a Centrelink certified specialist. I was advised to see a rheumatologist or an immunologist.

I went back to my regular GP and enquired about a referral to see a rheumatologist. I was told there is only one rheumatologist at the Royal Hobart Hospital who bulk bills patients and there was a one-year minimum waiting list.

In 2022, I attended a further 8 appointments collecting the same information again, from specialists certified by Centrelink; a further 16 weeks of no social interaction. I was managing one protein-rich meal a day and subsidising all other meals with oats or cheap carbohydrate-rich foods known to cause more harm to the ME body, as I couldn't afford the cost of healthy foods. My quality of life deteriorated and my health significantly decreased during this time.

In early 2022 after being denied the DSP for the second time because I hadn’t tried graded exercise therapy (which is now believed to do more harm than good), I appealed the decision with the Administrative Appeals Tribunal. I have been denied the DSP in the first and second review. Now it’s mid-December 2022 and I am still awaiting their decision, expecting a final decision to be made in February 2023.

Sometimes it feels like I'm being held hostage by what is supposed to be a support net. I ask myself what's the point of living if I can't afford to live, to have my basic needs met. But I desperately want to live and recover. It's just exhausting always having to prove my right to exist in an ableist, capitalist society. Always feeling like I'm a day away from homelessness, or couch surfing, or malnutrition.

All I want is to be a valued member of society, to afford the basic necessities. It took me years to apply for the DSP because of the stigma, because I was a student and activist and I held fast to those labels. I was strong and brave and had overcome everything that came before to get here, to build this life in which I was finally happy. It took me a long time to learn the strength of vulnerability and seeking help. I will no longer be ashamed to be sick or disabled.

I was also scared I was giving up on the idea of recovery. The DSP rules stipulate you must have a ‘permanent condition’ and you are asked to prove this over and over even though you don't know the future, only the suffering you are enduring now, and the difficulties you face every day. It is hard to balance this proof of permanent condition with a recovery mindset. If I could go back, I would apply for the DSP as soon as possible. I would also get a referral to see a rheumatologist, no matter how long the waiting period, because there is no way around it.

Ultimately, I believed I could control my body and the recovery. I was wrong and if I could give advice to anyone it would be to surrender to rest as soon as possible, to listen to your body, and ask for help, because the alternative could mean being sick for years. I reached out to my community and they showed up for me, and now I can’t imagine going through this alone.

For most of my life I held my breath, made myself small, aching, and bruised. Energy is like love: you can't see it, but it's the life force. So to have access to only 10% of what you're used to can feel a lot like being caged. Your every movement becomes about micromanaging and it feels like a very unnatural way to live. I know the wild wolf woman wants to come out and play but I lock her in to protect her from the cost of play. She is always howling at me. I remind myself to breathe and sometimes this is all I can do.

Posted by @PNagorckaSmith

"It feels like I'm being held hostage by what is supposed to be a support net"