Catherine is a mentor to me and in Solidarity discussed her battle with Linear IGA. In this second post, Catherine discusses the difficulty of being accepted for the disability pension once she realised Linear IgA was going to affect her long term ability to work.

When I first became ill with an autoimmune disease, I soon realised that I wasn’t going to be able to continue working until it was controlled or went away. It took me about 6 weeks to realise this, as treatment after treatment failed and my condition grew steadily worse. I contacted Centrelink to enquire about the disability pension and was told that it was highly unlikely I would be eligible for it.

Even patients with terminal cancer only received it in the final weeks of their lives and no one had even heard of Linear IgA. My diagnosis didn’t spark the same outpouring of sympathy that those who develop cancer receive, only puzzlement as to why a rash could cause so much trouble. I felt the same …

I decided to visit the local Centrelink office where I talked to the relevant officer. I found myself crying as I spoke to her, saying that I really hoped that the docs were right and that the disease would soon go away, but so far that had not happened, I had continued to get worse and had had one adverse drug reaction that had nearly killed me.

My doctor finally agreed to state that it was likely I would be unable to work for two years. Unfortunately, he needed to tick the box that indicated more than two years, so on this first assessment, I failed to get the disability pension.

I had about 6-8 weeks to appeal this decision, so I waited till near the end of the appeal period in the hope that my condition would resolve in that time. Or that the lack of improvement would strengthen my case for the pension. Time is an important factor in this process.

I explained to my doctor my predicament and he agreed that more than two years was likely. When I lodged the new forms with Centrelink I said I truly hoped that this was wrong and that I would soon get better and be able to resume my normal life.

Articles available on the Internet indicated that the mean timeframe for this illness was around 5.5 years. I believed I wouldn’t be one of those who had it that long. But in fact, I had it for 9 years and still do not have normal energy levels 11 years later.

When I’ve attempted to work, I get worse and even part-time work makes me cripplingly tired and causes my skin to break out. Any hopes I had for resuming a normal life disappeared years.

I have discussed how I had similar difficulties with Centrelink in my post, National Mental Health Week 2016 9 Oct -15 Oct: A call for the National Government to embrace mental health and wellness. The disability pension is certainly a helpful aspect of Australia’s welfare system. As you can imagine there is controversy about the scheme and the Australian government has recently cracked down on a system that was already highly regulated and restricted.