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Getting ready for the world of work with JIA. The importance of involving young people in the research of educational and vocational issues facing young people with arthritis.
Zahra Baz, Janet E McDonagh
High school, GCSE’s, training or A-Levels then work, or university then work.
This is the typical outline for young people in the earlier stages of their life, with an expectation of knowing what career path you wish to venture down by the age of 18 at the latest. Increasingly, work has been recognised as a necessary health outcome in adulthood, so far this same importance has not yet been applied to adolescence. Being ready for work includes how well you do academically at school but also what work experience you have, your communication skills, self-esteem, your own expectations and aspirations as well as those of others. For those with an invisible illness, this is extended to having knowledge for your rights and considering society’s attitudes to illness - which, currently, is not widely taught in schools.
Therefore, in this article we would like to raise awareness of how conditions such as arthritis affect the lives of young people in school, college and/or university, as well as of those in training and within the actual world of work.
Zahra’s Story
To give a little bit of background of myself and my own experiences, I was diagnosed with JIA just as I was going into high school. Completely new school, completely new people, completely new me. However, to my classmates and teachers, arthritis wasn’t the main concern. I think it’s worth sharing that I also have Amniotic Band Syndrome affecting both my left and right hands. It isn’t an invisible illness, and in terms of support within school it felt as if this was all that needed consideration and understanding.
This leads me on to the first major issue within schools: the general lack of understanding. Despite the advancements in the awareness raised for young people with arthritis it is still deemed uncommon, with the myth that “only older people get arthritis” being widely perceived. If the general belief is that arthritis doesn’t affect those below the age of 70, how are those working in schools supposed to be aware and understand?
Already dealing with the stressful demands of academia and navigating life as a young person, this widespread lack of understanding means that they now have the added responsibility of communicating the details and needs of a condition that can’t be seen. It’s easy to describe the basic symptoms of arthritis - inflammation, stiffness, pain and fatigue - and it’s easy to understand these in theory. However, describing how these can differ on a day-to-day basis is where it gets tricky.
For example, when I was studying for my AS-Levels, one of my teachers mistook the constant state of pain and fatigue I was experiencing as complacency. After trying to explain to my teacher that this wasn’t the case, I was just ill, my Head of Year asked me what the school could do to better support me - I was being listened to! As I was still in the process of learning how my condition affected me, how it differed daily, and, most importantly, how it could be managed, my response was simply for teachers to be a bit more mindful; to have more understanding and to not compare me to the abilities of others.
This brings me to my next point: signposting. Signposting for both schools and for those living with an invisible illness such as arthritis. Knowing what resources are available and being able to be a part of the discussion of what works and doesn’t is fundamental to positive experiences in school, and later on in the world of work.
One organisation working to increase understanding and provide resources is RAiISE - Raising Awareness of Invisible Illness in Schools and Education. Founded by Sophie Ainsworth in 2016, she was inspired by her own negative experiences in high school after being diagnosed with lupus at 14. Currently, RAiISE are preparing to launch an informational resource pack on supporting students with an invisible illness in education. Developed through workshops and conversations with experienced young people between the ages of 5-25, and well as their parents, families, teachers, healthcare professionals and charity representatives; the resource pack will include tips for teachers, discussion surrounding communication, trust and a range of specific issues that were revealed during workshops. Additionally, practical resources will be provided, such as a ‘health passport’ that would include the basic details of a student's condition: what they can do on a good day, what they may struggle with on a bad day, and how their condition actually affects them. “Putting the condition and symptoms into a practical way of describing it and to provide a clearer understanding was our aim”, said Sophie. The resource pack is set to launch in Autumn 2021.
For those interested in the work of RAiISE, more information can be found on their website and socials - https://raiise.co.uk.
Next up: dependency. As I didn’t know anyone at my high school before my diagnosis, it wasn’t a question of whether or not I should tell people about my arthritis - especially when they were already aware of my hands. I consider myself to have been extremely lucky of how understanding and supportive those around me were of my conditions, and I genuinely don’t think I would have ‘survived’ the social and physical side of school had it not been for them. On days I could hardly move because of pain, they would notice and offer to help me pack up after class, carry a file, or photocopy their notes so I wouldn’t be in pain rushing to write them. Looking back, I do feel bad for how much I depended on those around me in terms of being able to manage my conditions on a day-to-day basis; but I am also incredibly grateful for the support they provided, physically and emotionally.
When it came to entering into the world of work, I felt very lost, to say the least. I wasn’t sure of what I could handle physically or how it would affect my conditions. As so many of my concerns were to do with my arthritis and working, it put me off even applying for a job until I was 19 - nearly 20.
Typically, there is a lot of debate surrounding whether or not it’s better to disclose arthritis to a potential employer. I’ve had numerous conversations with other young people who said that applications or interviews where they did disclose their condition were not successful, whereas when they didn’t they were offered the job.
While I have always included my arthritis on job applications and interviews, I have found that success in this regard is entirely to do with the employer. Are they themselves understanding? How does the company want to be perceived? Do they genuinely value their employees?
I’ve had instances where the interviewer was extremely enthusiastic about bringing me onboard, reassuring me that I would be listened to when it came to my condition and that the work would not affect me. However, when I actually started the job I experienced the complete opposite. On a day I was in tears from the pain I was feeling one member of management told me that I needed to leave my emotions at the door, because they needed a shift out of me. The degree of leniency in the workplace was entirely different to that in a school, and this brought about newfound issues - stigma, judgement from coworkers, constant comparison that resulted in wanting to prove and push myself, as well as a real need to learn about my rights in the workplace.
The stigma and judgement from coworkers is so subtle it may appear nonexistent. If I had to ask for help, I often would find myself over-explaining why I needed that help and apologising repeatedly for taking them away from their own work; even if it was for just a second.
It’s impossible to discuss having arthritis without mentioning the impact it can have on your mental health. With anxiety and depression prevalent in those with arthritis, the added stress and, almost, paranoia of constantly wanting to work to the same standard as those around you is exhausting. There would be times I pushed myself so hard to work in the way expected of an able-bodied person that I wouldn’t be able to walk the day after. It’s important to strive for your best, but never at the detriment to your own health.
Of course, the nature of the job plays a very large role in how it can impact your condition. Most of my jobs so far have been in retail and can be quite physically demanding at times. It’s only recently that I’ve found an employer who, so far, is fully understanding of me and everything that encompasses. At a weekly review I discussed that I was worried about not working at the same speed as others, worried that I was keeping people back; this member of management was quick to reassure me that there was nothing to worry about, that they would rather I took my time to learn and not get hurt in the process.
While I still have a lot to learn about working with arthritis, I do believe that it is paramount to disclose your condition and speak up about what you need for maximum support. More signposting is needed, for individuals and for employers. Whether this be directing you to products that can help daily life, knowing who to talk to, or even being shown the types of work people with arthritis can do to reduce the internalised disbelief so many of us face. Understanding and support cannot be provided if they aren’t aware to begin with.
I also feel that our rights within the workplace, especially when you have an invisible illness, should be taught in schools in preparation for work. Careers classes are spent preparing you for further education, instead of for the world of work.
Navigating a life, relationships, a new job and a chronic illness is difficult enough. There are people with the information and knowledge, the lived experience, that can make at least one of these processes easier. It’s important that this information is accessible.
At the moment, we don’t know how best to help young people with rheumatic conditions to become ready for work, because most research has focused on adults who are already in work when they develop arthritis – very different from those who have yet to enter employment like young people. Researchers at the University of Manchester have discussed this area of research with members of the national youth advisory panel Your Rheum (http://yourrheum.org) and are developing a “Work Ready” network of professionals involved to study this area with young people and their families to identify the barriers and facilitators young people encounter. The hope is to then develop a support package for use by health professionals in collaboration with education, training and employment professionals in order to help young people with rheumatic conditions get ready for work and meet their true potential in life, equal to those of young people without an underlying health condition.