Going to work

When looking for work young people felt concerned about their chances of finding the right kind of work for themselves individually. For some finding the right job had been a case of trial and error. Being able to cope with a job could be difficult for people with certain chronic conditions, as was knowing where to get help and advice if things didn't work out.

Like other young people, those who live with a chronic illness realise they need qualifications and work experience but described how bouts of illness meant that they had missed out on training and work opportunities. They know employers should give them the same chances as others and they want to be independent, but some found it took a lot of persistence to achieve what they wanted.

Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and enjoys earning her own money and being more independent.

He has just left university and knows there are schemes aimed to help people in his position (he has arthritis) manage at work. Now all he needs is a job offer.

Young people told us about both their good and bad experiences of what it was like to work and manage a long-term condition. Several of them had found good ways to overcome some of the difficulties they had at work whenever they felt ill or had to take time off.

Good experiences at work

Talks about her own experience and gives advice to young people with (CF) about how to go about finding a job.

She studies full-time and works part-time and says that she's always up-front about CF with employers and that its not yet held her back.

Her boss used to have asthma so he understood when she was off sick with bronchitis. Does not think that her asthma is an obstacle for the type of work she does.

Bad experiences at work

She describes how in a previous job her colleagues had been unsupportive and had made unhelpful remarks.

She fainted once at her work (she has epilepsy) and had to go home and her colleagues accused her of skiving. And the manager threatened her with dismissal.

Making career choices

Several young people said they worried that they might not get promotion at work or be given more responsibility because of their sickness record. Inevitably some had taken time off work to go to hospital for treatments or check ups. Others said they had days when they didn't feel well enough to leave home and make the journey to work.

It could take time to find the sort of organisation that was sympathetic to people with long-term conditions, but those who had done so felt good about it.

She has scoliosis and says that what worked best for her was to look for flexible hours or jobs where you can work from home. She recommends the NHS and local government.

Some people had found ways of coping with both the demands of the job and also having a bad day or days. One young woman with scoliosis, if she feels she might be heading for a bad day, she copies her work onto a memory stick so that she has the option of doing some work from home.

Based on their own experiences, young people felt it was important to be realistic about what you can and can't do in the way of work, rather than setting your heart on the kind of job that would be impossible. One woman with cystic fibrosis said she realised that being a journalist or a detective would have been out of the question as she simply couldn't have coped with the long-hours and travel.

Having a long-term condition has prevented some young people that we talked to from taking up a particular career. Several had to make a compromise in their choice of work.

She wanted to train as a nurse but because of her epilepsy she was advised to specialise in theatre rather than general nursing.

Several young people we talked to had seen a career advisor, used the internet to find out more about the company and its policies about disablement, found out about their rights and benefit entitlements, and had contacted relevant charities (e.g. Cystic Fibrosis Trust, Diabetes UK and Asthma UK).

One young woman with cystic fibrosis said that it was depressing to be told about all the jobs she could not do - what she wanted was information about those she could do.

What should you say about your medication and condition when you apply for work?

Different views were expressed about the need to tell employers about your medical condition. Many believed that legally any potential employer is bound by law to give you an equal opportunity to have your application considered if you have the right qualifications and experience and that you cannot be discriminated against on the basis of your condition

She discloses her epilepsy but adds 'controlled by medication' or 'one or two seizures a year' on the form which she thinks helps her cause.

Sometimes she doesn't tell employers that she has sickle cell as she's found that they don't really understand what it means.

Giving up work because of illness

Several young people said they had to give up work because their condition had got worse. For example one young woman found her drugs no longer controlled her pain. Another young woman with sickle cell went through a period of being frequently ill and was having to take time off work in order to prevent having a crisis and ending up in hospital. Both these young people explained that they knew they were letting their employers down, and they felt very bad about it. Several of those who had given up work because of illness said that they missed the money. Many explained how much they disliked having to depend on benefits and/or their parents.