When I started writing I was doing it to process what I had been through, what I was going through. Then I was doing it because I thought it was important to share, because I wanted people to know the realities of being sick, and being on a benefit. Then I started connecting with people. Others in my situation. Others who offered to help. Others who simply wanted me to know they cared.
And now? I’m doing it for all that, and to give myself a reason to keep fighting. Literally, a reason to get out of bed.
My friend Andi tweeted something the other day which made me think. “Sometimes the incongruity between my activism and my own self loathing just cuts really deep.”
I was nodding hard as I read this. The space between my activism, my feminism, my image positivity, my bravado – and the everyday reality of illness and anxiety is very hard to occupy. I feel less than genuine because my anger, my courage is not inherently or consistently manifest.
I continue the battle because this blog has become something more than an outlet. Before I got sick, I didn’t know how to reach out. I didn’t know how to confront things, and I didn’t know how to ask for help. Now, I ask for it every time I write, despite how difficult that is. I ask for emotional support, and understanding, and compassion. I feel the validation when people reach back. I can’t stress how vital this has been for me.
During an interview with a journalist the other day, they asked me what the hardest thing about being sick and on a benefit has been. The answer was easy – isolation.
I’m not just talking about being physically stuck at home alone. I’m talking about the stigma of illness, and the stigma of being on a benefit.
Longterm illness makes people uncomfortable. They don’t want to ask if you’re ok, because they know you’re not. Sometimes they awkwardly tell you you’re “looking good.” I hate this one, because either they’re lying, or I do look good – and I wish I didn’t, because it would be easier for people to understand what I’m going through if my pain was visible.
People stop expecting you to improve. Some people’s sympathy runs out. People don’t know how to interact with you because you’re not the person you used to be. There’s only so many times they can reassure you you’re going to get better.
Then there’s the other uncomfortable social situation – being broke.
Money is not something I ever wanted to talk about. Discussing it publicly is incredibly challenging, But I’m doing it because I’m hoping it will go some way to breaking down the barriers around poverty. To addressing the presumptions that people on benefits are willfully lazy and living it up on the government’s credit card. This couldn’t be further from the truth.
Visiting the WINZ office shouldn’t be denigrating or demoralising – but it is. There’s a very clear line between the people who work there and the people who are coming for support – defined by the presence of security guards watching your every move. It makes me feel like a beggar. Never have I been seen on time. Never have I not been wracked with nerves because they’re probably about to deny me whatever basic need I’m requesting assistance for. It’s the oddest, most elitist, most imbalanced power struggle I’ve ever been part of.
A few things I forgot to mention about my last visit. I had to bring copies all of my current bank balances and lay them out for scrutiny. My entire financial situation is openly discussed and becomes part of their records. I understand why they need to do this – to prove that I’m entitled to help – but this is the first step in creating the unhealthy power imbalance. I’m expected to be totally vulnerable, and place my trust in a system that has given me no reason to do so.
I then had to provide proof of all my expenses. I had hoped that they would help me pay my accountant. Getting an accountant was a decision I made before I got sick, but it proved to be a wise one, because I’ve been too ill to do my tax accounts. My case manager glanced at his bill and said “No, we don’t pay things like this.” Things like what? Services they presume I could live without, I guess. My, how excessive I’ve been!
I then spoke with her about moving house. If I do move, the rent in the new place will be overall higher than where I am, but my share will be cheaper. She pursed her lips at that and said “The purpose of WINZ is to help you get into situations where you are spending less.” UM, WHAT? Yeah. If I want to move to a more expensive place, despite the major benefits this will have for my physical and mental health, they won’t support me to do so. They’ll only loan me the bond if I prove that the place will eventually cost me less.
WINZ are not interested in my physical health. They’re not interested in my mental health. They’re interested solely in how much of “their” money I am spending, and how they can reduce it.
Because of this insidious enforcement, I feel like a criminal. I feel like the money I get given is an extremely grudging allowance from a bullying older brother, who could call it in any second. Who reminds me with weekly letters of the situation I am in, and the rules I have agreed to. Check that, it’s not an older brother, it’s a loan shark with a pack of knuckle dusters. God forbid they should find out I bought some tampons.
So yeah, I might find this a struggle, to share my personal circumstances with the world, to raise my voice, to try and express what’s wrong with the system, to try and fight, when, in reality, I’m a quivering mess. This space is not comfortable to occupy.
But I will keep doing it. Not for sympathy, not even with any real belief that things will change. But because it’s one of the few means of support and communication I have left. And that is worth getting out of bed for.