My Working Life

I got my first job at 12. I worked as a chambermaid at a local holiday camp.

I managed two shifts, but I kept vomiting and was in too much pain to make the beds, so they didn't want me to come back.

Next, I put an advert in the local paper to offer my ironing services. A lovely lady employed me for three hours a week. She lived in the next village three miles away, so Mum and Dad bought me a shiny new bike to get there. I used to have to stop half way, doubled over in pain. Dad was really angry that I never wanted to use the £80 bicycle, so I stuck at it for 6 months.

At thirteen, I set up my own music school. For the next 5 years, I taught younger children to play the keyboards. In the end I had 20 students and we won every class of the county music festival. It was great! I earned £12 an hour and I was only 13!! Later, when I went to college, I supplemented this already-generous income by hauling three enormous keyboards to pubs and clubs and restaurants. I morphed into piano-bar-jazz-totty and loved every minute of it.

One New Year, I was booked for three nights to play the entire weekend at one of the most famous restaurant-hotels in the country. It was 150 miles away and Mum was going to drive me enjoying, a lavish weekend as reward.

The night before I was due to go, the crohn's-ghost of Xmas past flared up and I spent all night writhing in pain and vomiting every 20 minutes. It went on all night and all the next day until I was delirious. By lunch time, Mum was begging me to phone the doctor, but if he came and gave me whatever horse tranquilliser he usually did, there was no way I would be able to play, let alone sing.

We agreed that I would have the injection, then get straight in the car. As  it was three hours away, I argued that I could pass out all the way, and hopefully I would wake up feeling better before I was due to go on.

When we got there, I dragged myself back to consciousness, put on a fabulous red satin frock, an inch of make up to cover the pain and smiled and sang through the haze.

At uni, I worked all through as a barmaid. I had to, we were poor. It made me so ill I used to have to sit on the beer fridges to get through the shifts. The pain was always there, clouding everything, filling my eyes with unwanted and unexpected tears. Still, I flirted and traded banter, as barmaids must, and never even considered leaving early or not going to work.

You see, I didn't define myself as ill, even then. It took a very long time before these "episodes" became a life, before they wore me down and defeated me. I never had any support from college or uni, despite missing a third of both courses and I never expected any. I would make it through an academic year with grim determination, then collapse into a hospital bed for most of the summer holidays, only to discharge myself in time to go back.

After uni, I got the best job it's possible for a graduate to get. I was selling cable TV on the telephone just as it arrived in the UK. Everyone wanted it and we couldn't fill in the contracts fast enough. We were all young and ambitious and our success led to nights out drinking champagne and a shower of gifts and incentives from delighted media moguls.

By this time though, I was dangerously ill. I couldn't eat at all and faithfully took a thermos of liquid feed to work every day, sipping it miserably while everyone else went on bacon sandwich runs and made dinner plans. The pain was so terrible, I had to sit with my legs curled up under me on my office chair and move places to be as close to a vomit haven as I could be.

Finally, after three months of farcical, foodless "normality" I was rushed into hospital, where I stayed for 5 weeks, having my first major operation. When the surgeon came to see me after the op, he said I would have died if they'd left it for even one more hour. My bowel had started to perforate, I had a 12 inch abscess and the disease had eaten away my appendix entirely.

I'd only been working for 4 months before the op, but the day I walked back into the office (just two and a half weeks after surgery - no-one told me I shouldn't drive that soon) all my colleagues stood up and gave me a round of applause. My boss called me into her office and I shuffled in reluctantly with a heavy heart, sure she would have to fire me.

Astonishingly, she said I was so good at the job, that she would not only keep me on, but she would pay me for the whole time I was off, including an average commission.

Sadly, the company relocated to Manchester, and we all got made redundant a few months later.

And so began a ridiculous cycle of

Get a job
Work hard at job
Do well at job
Get too sick to do job
Get rushed into hospital
Lose job

I tried cutting out the commuting, but the day was still too long.

I tried a job working late shifts, hoping I could spend my customary 2 hours on the loo in the mornings and still do a day's work. The pain was still too terrible. I couldn't think through it or sometimes make myself walk the mile to the office every day.

I tried a job as a customer service assistant for a large pharmaeutical company. I was working in shipping and I loved it. My colleagues were fun and the work was interesting. The morning drive took me through the National Trust estates of Sussex - Arundel, Pulborough, Petworth and Cowdray Park. I'd see deer, resting in the morning mist and arrive at work feeling calm and happy, but the crohn's was always there.

The cafeteria was incredible and they used to cook me my very own soup every day from "safe" crohn's ingredients. My boss became a good friend, and would notice when the colour drained from my cheeks and I rushed off to vomit. When my eyes drooped and the overwhelming urge came to just sleep, she would suggest I get under the desk and take a nap! "No-one will know" she'd say, "I'll tell them you're in a meeting."

All the same, surgery caught up with me, and because I was only temping, I lost the job - and the income that went with it.

Finally, I retrained as a Microsoft Certified Systems Engineer. I got a career development loan and passed all the exams. I thought that if I could earn more per hour, I could work less, but the only contracts were around London, so my day was just as long and 5 times more stressful.

By this stage, my friends and family had formed a direct action group. They all got together and decided enough was enough. Working was slowly killing me and the harder I tried, the sicker I got. They ambushed me with Incapacity Benefit forms, nagged me incessantly, refused to go away for weekends or take me on holiday. The made me face up to the fact that I was sick, whether I wanted to or not. I'd had four major operations, I weighed around 6 stone and I'd never had a remission.

Giving up on my dreams was the single hardest thing that chronic illness has ever made me face. I was destroyed, defeated. I'd battled to stay at uni, despite doctors telling me every year that I shouldn't, I'd battled to be a success, to have a career. Who was I now? Who would I be?

Sue was a grafter, a winner. How could she redefine herself as a failure? A loser?

It took me a long time.

Slowly though, I found other things. I supported the Labour Party more locally, taking on back office jobs that I could cope with. I helped people, took in friends who'd fallen on hard times because it gave me purpose.  I cooked for soup kitchens now and then and ran our household budget with such imagination, that somehow we survived on one wage.

I went all "Big Society"

But now, you see, that's not valued. I feel guilty for leaving my home wearing heels and make up. I am made to feel useless unless I "work". I must become a cog again in the huge machine of growth creation. Not in the third sector, but in the "market" sector.

So if you run a company and want to give me a job, I need a nice big desk with nap space beneath it. I need access to healthy food and my desk has to be nearest to the loos in case I'm sick or I pooh in my pants. I need totally and utterly flexible working hours - I might be off for weeks on end or need days off at least once a week for hospital appointments or procedures or meds.

I'll need a little "safe room" where I can inject myself - toilets aren't very sanitary for that kind of thing. I froth at the mouth a little from the meds I take, but we can probably ignore that. When my brain shuts down completely from pain and exhaustion, I'll need you to be very understanding when I send the wrong consignment to the wrong country or lose a weeks profits by forgetting to charge the customer.

Finally, you need to be OK with crying, (I know a lot of men in particular find this uncomfortable) You see, when I just can't take any more, my eyes have this annoying habit of filling with tears - my body's last weapon in the fight for rest.) When the pain and exhaustion and nausea all get too much, I'll need somewhere quiet to cry. Uncontrollably huge, wrenching, sobbing, gasping tears, where no-one can see me and I don't make customers feel uneasy. Once that's out of the way though, I usually feel much better, so onwards and upwards eh?

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Today sees the launch of a new campaign by The Broken of Britain. We will be using twitter and Facebook today, over the weekend and through next week to raise awareness of the changes to ESA. The deadline for public enquiry submissions is next Thurday 14th April. This is your chance to tell the government about your working life, why you claim ESA and how it will affect you if it is time limited to just one year or how the Work Capability Tests fail you. 

We'll be using the hashtags #fitforwork and #DWP45 on twitter, and would love to hear from as many of you as possible. Please reteweet them if you see any - we'd love to get these trending. 

You can find details here on how to make a submission to the enquiry. 

Please share this article on twitter and facebook, retweet, link and promote - we need as many people to make submissions as possible. 

**You will find my Facebook button is currently not working. Simply copy and paste the article link and paste it on Facebook, that should work fine.