Employment and volunteering

Some people with arthritis find working life difficult, but there is support available. Most people want to carry on working and there are many reasons to do so, including money, enjoyment of work and the chance to see other people. Many people with arthritis find that working makes them feel better physically. However, help is available for those who are unable to work.
In this section we describe what young people had to say about work. In the next section we talk about money and the different sources of financial support available to young people and their parents (see ‘Money and financial support’).
The world of work
Some of the people we spoke to were at secondary school or university (see ‘School, College and University’), but others were young adults who had a job or were trying to find suitable work. Regardless of their age, people told us about their “dream jobs” and career aspirations. For example, they dreamt of becoming doctors, nurses, pilots, scientists, police offers, soldiers, teachers, fashion designers and photographers. Career choices may be more or less affected by having arthritis, depending on what kind of thing people want to do and how physical or tiring the work would be.
Some of the young people we spoke to didn’t have a problem finding or keeping a job. Not everyone told employers that they had arthritis when they applied for a job, because they didn’t want to be labelled. They worried about discrimination, i.e. that the employer might not give them the job because of their arthritis.
Having a job meant more than earning your own money. Working for a living gave people confidence and a sense of independence. Work could also be fun and rewarding. After graduating with a degree in Fashion Promotion, Kerrie worked in fashion advertising. She enjoyed working as part of a team in a “creative” and “fast paced” industry. Michelle used to work as a recruitment officer for a university. She enjoyed visiting students in different parts of the UK and giving advice about applying for university.
Work sometimes leads to people making new friends. Lu enjoyed going out to colleagues’ house parties or meeting up for drinks after work. Volunteering could also bring similar benefits. Dan volunteered at his local hospital and made friends he could go to the pub with. Jazmin made lots of friends with arthritis by volunteering for the Children’s Chronic Arthritis Association. Jazmin and her friends could moan about arthritis and give each other emotional support. They also went out together to music gigs and charity events (see ‘Friends and social life’). You can read more about volunteering below.
Having understanding employers is an important factor in helping people hold down a full time job. People with arthritis may need time off so they can attend hospital appointments, but may also need more sick leave than other people. Rebecca (see below) has had to spend time explaining at work that DMARDs medication such as methotrexate lowered her immune system and made her more susceptible to illness (see ‘DMARDs’). Some people talked about having specialist equipment at work. The “Access to work scheme” provides money for equipment such as special chairs and footstools to help with sitting position and pain management. The employer doesn’t have to pay for such equipment but may choose to do so anyway. Feeling confident enough to ask colleagues to help with little things like walking to the printer could make life easier if somebody was having a bad day (see ‘Fatigue,  energy levels and sleep’ for ways of saving energy and managing tiredness).
Some young people and parents were worried about discrimination when applying for jobs. They worried employers wouldn’t give a job to somebody with arthritis, particularly in a time of recession or when lots of people are competing for the same job. Lu said there was a “stigma” attached to disability meaning that people have negative ideas or assumptions about disabled people. This was why she didn’t tell her employer she had arthritis when she first started.
Others felt more confident that they would be protected by anti-discrimination laws. Since the 2010 Equality Act employers have to make reasonable adjustments to accommodate difficulties in an interview or at work. Also, if the company displays the “Positive about Disability” sign people with disabilities are guaranteed to get an interview if they meet the minimum requirements of the job.
Bradley’s mum, Stacey, felt that Bradley’s arthritis had improved lots and shouldn’t hold him back. She also said that he didn’t “look” disabled and that his symptoms had improved over time. On the other hand, not appearing disabled may mean people are not as understanding or sympathetic as they might be. The fact that symptoms can come and go unpredictably may mean some colleagues don’t really understand there is something wrong. A lack of understanding or sympathy may come from a lack of awareness that young people get arthritis too.
Sometimes people worried about the physical demands of certain jobs such as being on their feet all day or working long hours. Charlotte Z wanted to join the police but wasn’t sure if she would be able to patrol the streets when she was in pain, so was also looking at jobs in forensics and criminal psychology. Kerrie was often in “severe pain” and had no energy left to socialise after a hard day’s work.
Holding down a full-time job is not always realistic. Kerrie had to give up her demanding job even though she and her employers tried their best to make it work. Sometimes working part-time or choosing a less demanding job is a solution, although it may mean having less money. Another option for some was setting up their own business so they could manage their own time and not worry about working during a flare-up.

Sometimes people could work for their parents when they got older. Dan had problems sleeping at night so set up a web-design business. Because he’s his own boss he can work at night and sleep in the day.
Sometimes people find it difficult to work at all. This can be a frustrating experience, particularly when people don’t like to rely on benefits. Ruth felt that applying for benefits was “dehumanising” and would rather be at work (you can read more about benefits in ‘Money and financial support’).
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Volunteering is another way to keep active and involved. Some of the people we spoke to enjoyed sharing their experiences with others and giving back to charities which supported them as they grew up. For example, Dan volunteers at his local hospital and spoke to other young people with arthritis about living with the condition. Cat volunteers for Arthritis Research UK. She raises money for the charity by running marathons and climbing mountains. She also speaks at conferences and represents the charity at the Chelsea Flower Show. Jazmin used to be a photographer at the Children’s Chronic Arthritis Association. Deni was the face of the Arthritis Care Direct Mail Campaign. The aim of the campaign was to spread awareness of arthritis in young people and raise money for free residential weekends for people with arthritis. At the time of the interview the campaign had raised £36,000.

The working lives of parents can be affected by their son or daughter’s arthritis. For example, parents may have to spend time at home looking after their son or daughter during a bad flare up. Parent may also have to take time off work to take their children to the hospital. If lots of appointments are needed then parents may find that they have to work part-time instead of full-time. It’s sometimes difficult to give up work altogether because carer’s allowance is not enough to live off (see ‘Money and financial support’). 

Last reviewed November 2018.

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