Employment and volunteering with arthritis

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.

David Z wants to become a university lecturer. Unlike some jobs it won’t make many physical…

Age at interview 21

Gender Male

Age at diagnosis 21

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With the library I mean there’s a restriction if I want to work with my friends. I mean there are facilities for me if I’m on my own like there’s special rooms that I can use but in terms of working together there’s the obvious, you know, restrictions because they don’t have the access to the things that I need in the general area. But in terms of jobs, the summer job that I had was in a fish and chip shop back home and that involved standing on my feet for nearly, you know, eight to ten hours a day and that now would just be impossible. You know, that couldn’t be done because I find it very difficult to stand on one place for more than kind of fifteen, twenty minutes. So in that respect yes, but with I mean with respect to jobs now, you know, with things like customer services and, you know, serving, that would be difficult because it involves, you know, standing and walking about. But in terms of the future, I’m not too worried about it because the kind of work I want to go into doesn’t really rely on that too much now. There’s a lot of kind of research and stuff and that doesn’t that doesn’t, you know, require that. It just requires you to, you know, have knowledge in the area and that’s, you know, my mental capacity is not affected by AS [ankylosing spondylitis]. So I don’t see it as a problem in the future but currently, it is a problem.

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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.

Lu found it straightforward finding a job after university. She didn’t tell anyone that she had…

Age at interview 26

Gender Female

Age at diagnosis 13

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Did you find it a problem finding a job in the first place?

No.

It was quite straightforward?

Yes, straightforward for me finding a job, I think you’ve just got to be in the mind-set for it. You know there’s no reason why you can’t be working at all. There’s no reason why you can’t have you know a life that everyone else has, everyone’s going to have issues or things that are going to change, or they’re going to go through things at some point in their life, so like why should you be any different really?

But I think yeah I know how it feels sort of going, you know ticking Do you have a disability? No I just, I don’t even tick it to be honest. Because most people you know that I know they’re just like if we didn’t know them we wouldn’t realise there was something wrong. So yeah I think

Do your employers know now?

Yeah just one of them, my in my team, my team manager and one of my friends as well.

Are they; is your manager okay with it? Is she supportive, is he supportive?

And I don’t think they have an understanding of what it entails at all. Like at school no-one knew what it entailed. I think there’s some education needed there definitely. Actually massively but yeah you know if I’m popping the painkillers then he’s known why, not that I’m just addicted to them.

Or if I need to get up cos I’m getting stiff or I’m, well I get told to stretch a lot apparently, so I always get pulled up on that, and I’m just like, Leave me alone.

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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).

Rebecca is happy with the support she gets from her employer. She has a footstool and chair to…

Age at interview 20

Gender Female

Age at diagnosis 18

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it’s not because they’re really good as well because I told them about my problem when I first started because of my desk and stuff, it was aggravating it a little bit because I didn’t have a foot stool or anything like that. So they did an assessment and have got me a stool and things like that that I could do. And the only thing with it is because of the methotrexate and because it weakens your immune system. I’ve been ill quite a lot, and unfortunately if I get a cold or a sore throat or something like that as soon as something’s got me, that’s it, it will floor me. The cold will turn into some serious virus or flu, so I’ll be off work. Or the sore throat, I’m really prone to tonsillitis, will turn into tonsillitis.

So I do get ill quite a lot and they work on the whole Bradford factor, the thing which is they, it’s, I don’t really know how it works, it’s something to do with the day’s you’ve had off ill, over the periods of illnesses you have had in the twelve months, times by something else, which gives you the Bradford factor. And anybody that’s over 120 in that situation is then put on an action plan to try and help you and be like that sort of thing. Which is happening at the moment, and they’re sort of like, What can we do to ensure this doesn’t happen Its like, You can’t. it’s the methotrexate. It weakens my immune system so if I get something it’ll floor me

And it’s like because it’s quite, so people who don’t know about the medication or the situation or whatever, especially with like, cos I’ve only been in the role for the last 10 months or so. So it’s trying to explain, especially to like a manager or something like that exactly why this is happening and then of course they’re sort of like, Right so it’s because of your knee it’s like, Yes it’s the knee but it’s the medication for the knee that means I’m getting ill a lot And because obviously the knee is the underlying problem, but then it’s the medication that’s causing the illness and things like that. So it’s hard, especially cos people who don’t know about this, so it’s hard to explain that your knee has led to this, which is quite difficult.

Mm.

But other than that work are really supportive with, like today they sort of said, Look the guys coming in to do this study on arthritis, sort of thing and it’ll help people, possibly help me with stuff on the internet and things like that and they’re like, Yeah do it So they are really good. And any appointments for anything I’ve got they’re happy with it’s just trying to explain why my knee is causing me to get ill so often and make that make sense is quite difficult. But other than that they’re really good.

Have you had any kind of aids for work? Kind of different chairs, different mouse pads or anything, kind of occupational therapy
Yeah, I had a, I was given a different chair because it had a different lumbar support that I can move different bit’s. So I can move the bit in the bottom and the bit in the back and higher up the back and stuff like that. And I had a foot stool which you can change the height and sort of angle it’s at and things like that. Which is good cos if it’s bad then, oh cos there are different things sometimes it helps to have the knee bent and higher up or out straight or, I don’t know it’s weird. But no they’re really good and if I do need anything else th

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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.

Michelle declared her arthritis when applying for jobs. She felt that this would help her get an…

Age at interview 25

Gender Female

Age at diagnosis 13

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It’s difficult because the feeling is that when you’re ticking that box, you know, Is this the kiss of death here? Am I kind of guaranteeing that I’m not going to get an interview? Are they going to look at it and think, Oh, well, she’s disabled. She can’t do the job’? Which is completely wrong. It’s, it’s the other way round actually. Normally employers nowadays, if you tick the disabled box, saying, Yes, I have a disability and you meet the minimum requirements for the post, they have to give you an interview. That’s normally the case. And I applied for a job as an international recruitment officer. And in the real world really I’ve got nowhere near enough experience and I thought, Hang on, have I got an interview? You know. I meet the minimum requirements but all the other kind of add-ons, not, the, the, the desirable criteria, not really. And I had ticked the, Yes, I’m disabled box. So I thought with that one, Well, I think I’ve just been given an interview because I meet the, the minimum requirements, and I don’t think I’ve really got any chance of actually getting the job. So I didn’t bother going to the interview. Which I don’t know if it was a mistake, but I didn’t really want to just go to an interview just because I’m meeting their, their criteria, their target of, of interviewing people who have disabilities because they have to. So that, that’s, that’s a tough one. And I don’t know, it depends how much I want the job as well. So if I really really wanted a job, I would tick the disabled box and say, Yes, I’ve got a disability. And then if I got an interview I’d definitely go for the interview, because I wouldn’t want to take the risk. Because sometimes if you don’t, I think if you don’t tick the disabled box, then it comes up at, at a later date that you do have a disability, you can get in trouble. They can say, Well, no, you didn’t tell us at the time. We can’t offer you the job. We needed to make adjustments for this post. And because we weren’t aware of it then, you know, you’ve kind of lied to us. So it, it’s, it is tough. But if it’s, I will say if it’s a job that someone really wants, then they need to declare it. It’s best to be straight upfront from the start.

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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.

Jenna wanted to be an army nurse. Her mum, Karen, was concerned that Jenna’s arthritis would get…

Age at interview 49

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Realistically I don’t know whether she would be able to do that because of the arthritis. I overheard him talking to somebody about you have to go through your basic training. Everybody has to go through the basic training and if there are any health problems I think that might cause her a problem. They might not accept her into the Army because of her arthritis but we’d have to look into that and going back to what I said before, she doesn’t like me telling people. I didn’t feel comfortable saying to the, the man from the Army that we were talking to, getting advice from on the Careers evening, I didn’t feel I wanted to divulge that she’d got this problem because she was there and I thought it might embarrass her and so I kept it to myself and just sort of hedged around the subject and I didn’t want her to feel that she couldn’t do it because of her arthritis as well, that it would hold her back. So I thought well I’ll not push that one but you know, just kind of sow the seed there that maybe she might not be able to do it that way.

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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.

Kerrie left a good job in fashion advertising to set up a bakery business. It is more flexible…

Age at interview 25

Gender Female

Age at diagnosis 22

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I work for myself now. Again, purely because when I eventually, made the decision to look at going back to work, even though I knew I wouldn’t be able to cope with full time because there’s still the continuity factor of it. The fact that I know that some days I have bad and good days, so to be able to do a full time job and commit to that is very difficult for me because I don’t want to let anybody down and, you know, I know that until I’ve had a really good period of time that I am well and am physically and emotionally able to do everything that I want, then I don’t think that it’s fair to seek employment. Because, you know, if I’m not fully ready then I can’t expect someone to take that onboard.

So really I just kind of sort out something to keep me occupied and keep me working, which fitted in around my lifestyle and around my condition, so that I could work when and as I wanted to because there were no other jobs around that really fitted to what I needed. So it was the case of I either do something for myself or, you know, go for the jobs that I physically couldn’t do that were part time and that were available, things like bar work and cleaning and things like that, which for someone with arthritis, is just not ideal really.

Do you get the same kind of satisfaction with being self-employed as you did when you were working for a company?

I think its different types of satisfaction like I am really proud of myself on what I’ve achieved with, you know, setting up my own business and, you know, having the independence and the ability to kind of follow an idea through. However, you know, getting praise from a team of people and working your way up that was something I really loved about my old job, which obviously, you know, when you work for yourself, the only person you get praise from is yourself. So it’s quite difficult to develop working relationships with people because you’re just dealing with yourself really. It’s totally different experiences but there’s good and bad things to both I think.

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Elizabeth worries about discrimination when applying for jobs. She doesn’t want to be on benefits…

Age at interview 18

Gender Female

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I do worry about employment in the future. Especially with like the recession going on now. If, you know if people are finding hard to get jobs anyway, but if there’s 20 people going for a job, you’re not going to pick the disabled one really. I know that’s really harsh, but it’s realistic cos you’d just be like, Ooh There’s a lot of competition but especially if you’re not well enough to go to work. I don’t want to be someone on benefits, but you kind of think will I be healthy enough to? I don’t know. So and also cos I’m 19 soon I’m gonna have to start paying for prescriptions. I’ve already sent off for my card, so that’s £104 gone for the year. it’s a bit of a shock. Yeah.

Yeah. What are your aspirations for the future?

I would like to have a successful photography studio, you know as I think being the boss would help, cos then I could pick when I work, I could employ others, but I’d still have a job that I could go to cos I wouldn’t like to be at home, I’d just go crazy. I, you know I’d need something to make me go, make me leave the house otherwise you’d just sit there going I’m tired, I’m not going out Just like that. You know but a comfortable life I think, I would like a nice apartment, a nice on the floor apartment, ground floor, no stairs, hate stairs, stairs are my enemy you know. But yeah just a comfortable life.

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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).

Ruth found the benefits application process dehumanising.

Age at interview 28

Gender Female

Age at diagnosis 5

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But as I’ve gotten older, it’s the most dehumanising thing. I don’t understand for the life of me why people would want to claim benefits if they don’t have to, because many’s the time I’ve had the doctor come here and they sit you down and they ask you the most embarrassing questions about whether you’re incontinent and all kinds of things and, you almost feel like you’re begging for money, which I absolutely loath I mean it would just be the greatest thing to tell them where they could stick their money to be quite honest. I genuinely don’t understand why anybody would want to live off the state if they didn’t have to. it’s so much easier to go out and get a job than have to plead to some doctor that you’ve never met, obviously it can’t be somebody that you know, somebody you’ve never met in your life and try and explain to him in the space of half an hour, or hour, all the difficulties of your life and why you deserve this, this benefit or that benefit. And you know, you have to, it sounds awful, you sort of have to lay it on thick because you know, looking at you, it’s very difficult to see what you’re problems are. You have to talk about the extremes of, of your illness and your disability and that is, as I say, it’s obviously be examined and now, I mean as a grown woman, you get used to it simply because it’s happened so many times but when you’re a teenager to be poked about and told to lift this and take off your clothes to just your underwear, to a doctor, a male doctor in most cases, is mortifying.

And I would, I’d get very angry and Why do they have to check up on me Why can’t they go check-up on the you know dole dodgers and people who, you know, are claiming housing benefit and claiming the dole when you know they re cleaning windows and painting and decorating I would get very, very angry and my mother would just say, Oh you know, it’s got to be done. it’s a means to an en, which is, is perfectly true but it’s not something I would do or want to do in a million years, if I had any other choice.

We had recently, without going into details, had a bit of difficultly with the social services over my benefits, over payment of benefits. Letters going back and forth and talking on the phone, and just so badly want to say, Look I wouldn’t be taking a penny of your money if, if I didn’t have t. So it’s not their fault, they have a job to do. So many of the people that they deal with are not genuine and they’re not in need.

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Volunteering

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.

Caitriona volunteered for Arthritis Care because she wanted to give back to a charity that has…

Age at interview 19

Gender Female

Age at diagnosis 13

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Well I’m a youth contact. So I help run the weekends and the events on which I actually participated in the beginning. I was offered the role when I was sixteen and I jumped at it because I thought this organisation has helped me so much that, you know, I need to do something, I need to give back. So I kind of did that sixteen/seventeen and I went through the training and then finally when I was eighteen I was able to help actively within the organisation. Now what I do is I, because I’m so dedicated to it and to the message it sends out I’m constantly at different fund raisers, I’m speaking on behalf of the charity. I actually sometimes go down to the clinic in which there are, a doctor runs, to try and spread the word to the young people and say, you know, "Yes you’ve been diagnosed but there are people, you know, similar to you." We try to reach out to everybody because we love seeing the same faces but it’s the people that we aren’t reaching that may need the help more. So again trying to include everybody that we already have and trying to reach out to other people to try and help them. And I think that’s the main issue with arthritis and young people. It is not known. People don’t know that young people can get arthritis, it’s actually quite rare in a sense as well. I think there’s only four hundred people estimated in Northern Ireland to have it which if you look at statistics for other illnesses, it’s quite low. So it’s, again trying to get the word out about young people with arthritis because as soon as you do that, I mean although it sounds like a stupid thing, you know, when people know that other people have arthritis but you know, and they’re young, it, you know, it will help but it really does help. If you know that other people are going through the same thing that you’re going through, the effect on yourself can be, I mean, remarkable, it will be remarkable.

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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. Parents 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).