A lot of the government services—getting support—respite or things like that—they are so hard to get and they take so long, you give up. At the moment, I have given up on just about all of them because it takes so much energy out of you and it is so upsetting. So you just learn to deal without them. Now I haven’t been bothered to call them for the past two years because whenever you call them, they just always have an excuse, never return your calls—you’re not entitled because there’s people who are worse than you. It’s just not worth it so we just don’t bother.
We did eventually get a. I think it was called special childcare benefit, just where your childcare fees are covered for I think it’s 12 or 13 weeks. But things like that, we weren’t ever aware of until another nurse told us about them. Because she had been in a situation where she’d had an unwell child as well and needed to do that. But those things, there seems to be a lot of benefits and things that you aren’t told about that — because that really helped at a time that we really needed it, because yeah going from paying say $120 a week for just preschool and day care to having three months of it paid for.
We were completely unaware of an illness like this. Making sense of the diagnosis of the disease and managing the disease seemed like a monumental task. I was a new mother in a new country faced with what was an impossibly difficult situation with no support at all. It would have made a huge difference to have someone making sense of the disease, the medication regime, the side effects and the prognosis. We were not aware of the benefits and support that is available for patients like us, and were too overwhelmed and exhausted to go looking for information. In fact we started accessing car parking benefits after 18 years at the hospital.