I didn’t really want to talk about how I got sick in my column, but I sat down to write and that’s what happened.
I guess it interests people – I mean, it’s usually the first question I get asked. “What happened to you?”
But I didn’t want to talk about it. It’s personal – what could be more personal than my body, my health? More than that, I didn’t want to feel like I was trying to defend myself. All the people that question me, that tell me “I don’t look sick” – this is not about you. This is about me sharing my story.
If you’ve been following me for a while, you’ll probably know bits and pieces. I sort’ve tried to be matter-of-fact when writing it, but that was difficult. I think my frustration shows through. I hope I come off as realistic and not whiny. It was probably the hardest thing I’ve ever had to see in print.
“The bug that changed my life.”
(NB: This is my original version, slightly different than that published in the Nelson Mail, 14 May 2014)
I had a stomach bug. That’s all it was. Just the usual traveler’s tummy, when I was in Bali for a friend’s wedding two years ago.
But when I got home… the pain didn’t stop. It came and went, but 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 eating 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 had three courses of antibiotics over four weeks. Nothing worked. Each time, the bug came back stronger. I was still working 50 hour weeks, much of the time from bed, with a bucket by my side.
I collapsed after not being able to keep any food or water down for two weeks. I was taken into hospital. I knew it was bad, because they took one look at me in ED and I got hoisted into a bed. Within minutes I had IV lines and heart monitors and doctors leaning over me with very concerned looks on their faces. I remember one of them saying: “Sarah, what have you been doing? A normal inflammation marker in a human body is 5. Yours is 400.”
I had Colostridium Difficile. “C.Diff” lives in our intestines naturally but in larger numbers it becomes harmful. The antibiotics had killed all my “good bacteria,” allowing the C.Diff to take over. If it’s not caught in time, it can be fatal.
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 WINZ is really about. If someone is so sick they can’t get out of bed, if they have a medical certificate that says they can’t expect to work again within the next year, if their condition is made worse by stress … why cause them anxiety by requiring them to continually prove that they are unwell and need support?
I’m now on a ‘Jobseeker’ benefit. I have a job – I’m still a writer and a consultant. I also have a certificate that says I am too ill to do it any more than a few hours a week.
I will continue to do my best to get well. There is no part of me that wants to live life like this. I want to use my degree. I want to write fulltime, and not have to rest every few minutes because sitting at a computer is both exhausting and painful. I want to be able to go out with my friends, instead of taking a row of pills and climbing painfully into bed at 7pm.
I want to never hear one more person tell me I “don’t look sick.” It’s not reassuring. It’s not a compliment. It’s saying “I don’t believe you.”
This can happen to anyone. Trust me.
It was just a stomach bug.
Oh Sarah I know where your coming from I’m so low and exhausted from dealing with winzs I could not cope so went back to work part time four hours a day for two days I am so ill. I also get told I look great which annoys me as I’m in so much pain throwing up food and water, can’t absorb nuritents I have to have B12 and iron IV very often, so hard to even do that. I also have an auto immune disease they have no idea what my bell stopped working I was throwing up poo, winzs still wanted me to work I have now had my bowel removed, in surgery got swelling on brain lost all eye site on,y a little has returned in one eye. I also live with cronic pain and have lost a lot of friends and a finance that cld not cope with me being bed ridden there are days I’m so weak and sore I can hardly walk. Sarah as you know this is so lonely and so upsetting to live like this after being so active with little support and winz loosing everything I give them many times to have to try and get these again is hard. I know how you feel with all the pain and meds , also the days you can eat and drink I’m down to 46kg and still loosing a crap life we have no one gets it. 🙁