Siobhan Rule, 26
My Story: Battling discrimination

I first began experiencing symptoms aged 13. Soon after I started Secondary school I remember coming home from lessons and sleeping from around 5pm that afternoon until the next morning and even then find it hard to wake up. Over the following three years symptoms persisted and the periods of excessive tiredness became almost constant. As a result my mum took me to see my GP who insisted they test for a variety of conditions including glandular fever and anaemia. The test results were negative and I continued on battling the fatigue, episodes of sleep paralysis and vivid nightmares. I struggled with school, was dismissed by teachers as lazy and I lost motivation, managing to pass only a couple of GCSE’s.

It wasn’t until a year later, aged 17 when I went to see the doctor about an ankle injury and happened to mention my persistent sleep problems, that I was referred to a specialist and finally diagnosed with narcolepsy.

Diagnosis gave me a sense of relief, a reason behind my symptoms and hope that I’d get the right treatment to be able to get on with daily life. I developed cataplexy later that year, but with the help of specialists have since found the appropriate treatment regime to stabilise my condition.

I’ve always managed to work and that’s important to me. I’m far less likely to suffer symptoms when I’m active and I want to be able to get on with life being myself.

After a series of bar jobs I went on to temp in call centres and although at times found it difficult was able to cope with full time employment.

Wanting to move out of temping work, in November last year I applied for a job as a maintenance co-ordinator with a property company. I went through a rigorous interview to get the position and was never asked about my medical health. On my first day however I decided that I wanted to be open with my new employers and colleagues and chose to mention that I had narcolepsy. I reassured them that it would not affect my ability to perform the role and they seemed accepting of this.

The next day I returned to work and was told by my boss that I was not suitable for the role. The company were concerned that the stress of the job could make the narcolepsy worse and I was asked to leave. I was shocked and upset that I could be discriminated against so unfairly and with the support of my family and solicitor decided to take the company to court for unfair dismissal. After several months of negotiation they agreed to settle out of court.

I’ve been able to move on, have secured another job as a personal claims advisor and continue to stay positive. I haven’t let narcolepsy or cataplexy change me and I’m determined not to in the future.