Sue's Story

I've always been ambitious and hoped one day I would work in politics. Sadly, at just 10 I started to suffer from Crohn's disease. I wasn't diagnosed until I was 16. Despite this, I still went to university and tried very hard to work for 9 years.

Each time I got a job, it made me sicker and I ended up having surgery. As the years went by, it became clear I had a rare form of Crohn's that led to strictures or narrowings growing in my bowel, leading to obstruction, agonising pain, constant vomiting and malnutrition. The only treatment is surgery, so I've been opened up and cleared out more times than I care to share.

I tried a job with later shifts, hoping it would help as I am at my worst in the mornings, but I just couldn't cope with the pain.

I tried working part time, but even that did not work.

I tried retraining in a job with less stress, but I still got sick.

I set up my own business, but I was just too unreliable to guarantee when I could and couldn't work.

After 9 years, it was clear I just had to give up. It was making me much, much sicker trying to work and at times, endangering my life.

Giving up work, giving up my hopes and dreams and ambitions was without doubt the hardest thing I ever had to face. (And if you have a condition like mine, believe me, I've faced things that make healthy people's jaws drop in amazement)

A typical week might see me have to take a 280 mile round trip to see my specialist, who is an expert in my rare condition, or to have a test or treatment. I will experience writhing pain and have to take opiate painkillers and anti-sickness drugs to get through the day. Obviously this leaves me unable to drive. Actually it leaves me unable to concentrate, write or even speak, usually.

Some days I will be unable to leave the toilet because of terrible diarrhoea, making it impossible to get my kids to school or get to any appointments.

Some days I might be relatively well, but they are few and far between.

Some days I might be totally unable to keep any food down, leaving me weak and exhausted.

Some days I might become so malnourished I need to start a liquid diet of specially designed drinks for bowel disease. They are disgusting and i have to plough through 2 litres of the stuff to keep my weight up.

If I can't eat, I actually prefer to be fed through a tube, though having a tube constantly in my nose and the back of my throat is hideous.

Despite all of this, my condition is "long term variable" and therefore is usually unlikely to qualify for help in the benefit system. My case is so severe that so far, I've qualified, but I fear that those days are about to come to an end. Many many people with Crohn's get no help at all.

There is no way I could work and even if I could, no employer would take me on. I'm too unreliable, too sick and too likely to leave for surgery.