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The Unwritten Battles of Receiving Disability Benefits Long-Term

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I don’t know how I keep managing this, but yet again I find myself in a tumultuous period of time. My kids have been off school for a couple of weeks and we have been blessed with good weather and physical ability on my part that has allowed us to go on some wonderful adventures together. Sure, I’ve had to make them watch a film when we get home so I can lay still awhile, but we’ve lived. It’s been great.

Underneath this happy, primary-color-saturated series of pictures, though, the undertow is pulling. In amongst those happy, grin-filled days came a rather unwelcome visitor. Those of you that follow my personal story know I have lived in temporary housing for over five years.

For those that don’t, here’s  a quick refresher — great academic job, big house, three kids. Successful. Health rapidly deteriorates, lose job, lose house, found out was pregnant the next day.

So here I find myself five years later, now a single parent with four children, still a homeless statistic. Still working to create a new better life, but on benefits and totally beholden to the state.

Going back to my visitor, or visitors should I say, the people at the local council housing department. Rarely do they come bearing good news; this time it was pretty damn crappy. The landlord who rents my house to the council as emergency accommodation is selling up, in part having been pressured to resolve the mountain of disrepair issues in my home, in part because it’s easier and more profitable I’m sure. This leaves me for the second time in five years with nowhere to go, this time with four children. The council of course have a duty of care to me and the kids, so we will be moved into another set temporary accommodation, a flat, house or B-and-B somewhere in my 1,376 square mile county.

So most likely not in my hometown.

Then bam, hit me again, the school allocations arrive and we don’t get option one, two or three. Instead we get put in the school closest to my home, although still not in walking distance for me. The school that wasn’t on my list for a wealth of reasons.

I have spent 20 years building up a support network in my hometown and at the public services I use here. The schools and doctors all know me and my family, because we have a very distinct and specific set of circumstances. I have worked so hard to develop that support system that enables me to retain my independence but gives me a plethora of options when I am in crisis with my health. I have a list a mile long of contacts and people that willingly offer support and assistance, teachers included, when I have needed it. Instead, I’m expected to start from scratch.

I don’t even know where we will be in three months’ time, let alone next September, so in many ways it feels pointless appealing this decision and as for the housing, I’m not being defeatist, but what can I do, really? Seriously, if you have some suggestions hit me with them, as I feel utterly powerless to control or change any of this stuff right now. Not where I live, where my children attend school, where I’ll be in the future.

I can control nothing.

I am a long-term sick and disabled single woman. I have four children. I can’t work and will never be able to in a full time sense again. I’m on state benefits. There’s a huge stigma to that fact, despite my best efforts to shake it. I’m a well-educated, smart, sometimes articulate woman who’s fought hard for every last thing, and I’m tired. I’m so tired of fighting for everything, every right I allegedly have. I’m tired of every single thing being a battle. It’s so hard being in my situation; I can’t even explain the constant conflict with the various agencies I deal with, aside from the battles with the general public and their ill informed opinions of people like me.

It is no holiday being in my situation. I present to the world a predominantly positive, happy image as that helps me to remain positive about my, at times, dire situation, but it’s not real a lot of the time.

It’s tough. It’s tears. It’s frustration. It’s anger. It’s self-pity.

It is a constant fight to see the bright side or be positive. I can’t work my way out of my situation. I can’t retrain for a better option of my life, I can’t magically wipe away all the baggage that comes with me. I am utterly powerless.

That’s the me behind closed doors that few get to see.

Next time you make a flippant comment about people being on benefits, or how being off work long-term must be lovely, please, stop and think for a second about the reality of that choice. Do you really think I would choose this battleground over my well-paid, respected successful previous life?

What would you choose?

I choose to live with as much joy as possible. I choose to continue to fight. I choose to be happy regardless. But please don’t think that’s the easy option, that my life is wonderful without any work. It’s by far the hardest option available to me, it’s a full-time job keeping as healthy as possible aside from solo parenting four children. Then there’s dealing with our family unit being in crisis mode over and over through external circumstances — housing, money, school.

All of us who are chronically sick or disabled have so many unwritten battles, it really is nothing like a holiday, laying in bed all day. On those day I have to it’s frustrating — I hear the birds singing and see glimpses of the world I want so desperately to be part of, through my window. I’m always aware of the million things I should or could be doing.

We keep going regardless and grab the good bits, focus on the positives and desperately try not to sink under the plethora of pressures put upon us.

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Originally published: May 12, 2017
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