I am fuming! Today, I logged onto MyGov to try to figure out some detail of my NDIS plan. There was a note from Medicare about my complete immunisation certificate. I thought it would be interesting to see what was on it, so I downloaded the file and had a look. When I got to the line that read ‘COVID vaccine’ I did a double take. It said I received my first dose of Astra Zeneca vaccine today. I assure you, I did not.

As a person with a disability, I have known all along I’m especially vulnerable to COVID 19. What wasn’t discussed in the initial health warnings around the disease is that it seems people with disabilities seem to also be vulnerable to the social and economic consequences of the pandemic. In Australia, we were totally excluded from the initial responses and have largely been excluded since. It has been heart breaking.

I self-isolated, keeping myself as safe as possible from the disease, always several steps behind the government advice on what to do to prevent contraction. I feel lucky to live in Canberra, where we’ve been COVID free for months and months and now I don’t feel scared to go out to the shops anymore. But I’ve lost the social connections I had before the pandemic. My friends haven’t come back to visit like they did before. I am so incredibly lonely.

Life became so much harder than it already had been during the pandemic. My condition meant it was already difficult to navigate around the world. But now I had to try even harder to avoid areas with groups of people. Panic buying meant the meagre supplies I usually purchased were gone on the rare occasions I could get out of the house. The medicines I relied on weren’t at the chemist anymore. I had to buy more expensive brands to get access to those I needed. Getting to medical appointments became more expensive too. But there was no relief for the cognitive burden of rearranging all this in my head and the financial burden of trying to figure all this out. People with disabilities were simply invisibilised in the response. No one thought of us, not in the health department, not in treasury, not in the community.

I have a condition called Myalgic Encephalomyelitis (ME), a type of Chronic Fatigue Syndrome (CFS). It is a multi-systemic neurological condition characterised by post exertional malaise that also affects the immune, gastrointestinal and other bodily systems. People often have sensitivity to noise or light, cognitive difficulties, muscle or joint pain, difficulty being upright, temperature dysregulation. I have all these symptoms. Not a great deal is known about ME, they don’t even know what causes it. But they talk about onset factors, one of which is bacterial or viral infection. In my case it was bacterial.

What is interesting is that many so called ‘COVID long haulers’ are actually now being diagnosed with ME, so there’s an interesting relationship between the two conditions. But also, we may now have a growing body of sufficiently newsworthy patients to warrant research money into the treatment and management of the disease. But the relationship between the two diseases also had many ME folks extremely scared of catching COVID and suffering even greater setbacks in their ME. People in our community were also concerned about how each of us would respond to the various vaccines given how unpredictable our immune responses could be. I shared these uncertainties, but I was waiting so long for the vaccine, looking forward to a familiar feeling of confidence after being vaccinated.

When the vaccine rollout was announced in Australia, I was so glad to see people with disabilities would be in phase 1. At first it looked like there may be a possibility of either the Pfizer or the Astra Zeneca vaccine, but it soon seemed that only those in phase 1a would receive the Pfizer and even those with health reasons for wanting one over the other would not have a way to access an alternative. When the details can out for phase 1b it felt like a knife through my heart to read that people with ME/CFS were explicitly excluded from receiving the immunisation during this phase. I was fuming.

People with this condition phase so much discrimination and exclusion. When I first got sick, I was essentially told I was hysterical. It was only after spending months with a clinical psychologist that she asked my GP to refer me to a rheumatologist for the ME/CFS diagnosis. I had to fight for three years to gain access to the NDIS, and a friend was then kicked off again after the court found that she should be given access. That fear lives with me every time I go through a review of my plan. There is a huge amount of stigma in the medical profession. Misdiagnosis and mistreatment abound.

Of what is known, we know this is both an immunocompromising and inflammatory disease (among many other things). It should, therefore, meet the criteria to be on the list for phase 1b on two separate counts. That’s before the social model of disability is considered, which I imagine is why people with schizophrenia, for example, were included on the list of conditions making you eligible for inclusion in phase 1b.

A large number of people with ME were too concerned with how their body would respond to the vaccine to want to get vaccinated. But those who wanted the protection should have been able to have that chance. I was tired of being scared, and tired of having opportunities taken away from me. Tired of being excluded from the response to a disease that posed a greater threat to my (very small) life, than it did to the majority of the population around me. I know a vast number more of healthy, able bodied people who have been vaccinated than I do disabled or vulnerable people.

The Disability Royal Commission recently heard that less than 1000 people in disability residential homes have been vaccinated. There are huge barriers for other people with disabilities to overcome to access the vaccine. This government continues to fail people with disabilities over and over again.

When I opened my MyGov account today to see that Medicare had a false record of my receiving an Astra Zeneca shot for COVID I could have breathed fire. Has someone stolen my identity to try and access their immunisation? Is the government trying to falsify data to make the statistics look better on how many people with disabilities have received immunisations? Because I certainly was given no such help in my battle to protect myself from COVID.

May is ME/CFS Awareness Month. If you would like to know more about this condition. Please visit Emerge Australia.