A disabling bug

Sarah Wilson writes in the Nelson Mail:

I had a stomach bug. That’s all it was. A bit of an upset, when I was in Bali for a friend’s wedding two years ago.

Most of us did – even the bride and groom had a couple days spent in their rooms. But when I got home . . . the pain didn’t stop.

It would come and go, but then I’d have weeks where I couldn’t get out of bed, and I didn’t know why.

I lost weight. Foods that had never been a problem made me vomit. I stopped consuming gluten, dairy, alcohol. Nothing made a difference.

Six months later, I was finally diagnosed with an intestinal bug called Dientamoeba fragilis. It’s nasty. But not as nasty as what was about to happen. …

I was in hospital for about 12 days. It should have been longer, but I discharged myself after being told that I now probably had ulcerative colitis, which is an incurable auto-immune bowel disease.

Eventually this diagnosis was revoked . . . but nothing was put in its place.

I had no proper diagnosis. I had no prognosis – no-one knew when I would get better.

I had to quit work and go through the harrowing process of applying for a sickness benefit – at a time when I couldn’t even get out of bed.

My work was everything to me. I felt empty, lost. Betrayed by my own immune system, which continued to flare out of control.

It’s now a year since I was in hospital – almost two since I first got sick.

I’ve made tiny amounts of progress. I can get around on my own, mostly.

I walk with a cane, because often I’m too weak and too sore to stand up alone. My body reacts badly to a large number of foods and, even if I can manage to eat enough, my system doesn’t extract or retain the nutrients.

I’m constantly undernourished and extremely tired. I’ve had to write this all in bits, and afterwards I’ll have to go and sit down for a while.

Frustrating isn’t the word for it. Frustrating doesn’t begin to cover the fury I’ve felt, going from being a healthy 26-year-old – to being bedridden, quitting work, losing friends.

To having a visible and debilitating disability.

Being disabled is political. It’s public, especially when it means that the world around you no longer fits your needs.

It’s not surprising to me that I have ended up using what limited energy I have to fight for disability rights – which is what my battle with Work and Income is really about.

Sarah’s story is gripping, and as you read it I guess the reaction is that this could have happened to me – it was just a bug after all.

Sarah has become an activist on welfare issues, after her frustrations with WINZ – which she wrote about here. WINZ has apologised for what happened.

But it does highlight that there is a balancing act with welfare reforms, and how WINZ implements them. And we shouldn’t assume the balance is absolutely right.

There are some on welfare who are able to work, and some of the measures introduced are necessary to target them.

But there are also many on welfare who have had horrible things happen to them, and a system which makes them prove every x months they are still unable to work needs some flexibility and judgement involved.

UPDATE: Sarah has written a sort of response to this blog, on her blog.