“You’re too young to have that”: JIA and Invisible Disabilities
When you think of disability, what comes to mind?
Possibly people that use mobility aids or assistive technologies such as wheelchair, cane, AAC device or an assistance dog. Over 1 million Australians have a disability that may include the use of one of these assistive technologies, but that’s only 10% of Australians with a disability.
The other 90% are people that you work with, are in your classes or might even be family members. They have disabilities that are hidden or invisible.
Invisible disabilities encompass a wide variety of disabilities often categorised into Mental Health Conditions, Chronic Pain and Fatigue Disorders, Neurological Disorders and Autoimmune Diseases. These can include MS, autism, depression, ADHD, brain injuries, diabetes, epilepsy, bipolar disorder, cognitive and learning disabilities, chronic pain, and arthritis.
Many people that live with an invisible disability are unable to receive not only medical supports but also social supports because they “don’t seem sick”. This is even more prevalent for young people with disabilities. Young people are often under diagnosed and CEO of the American Chronic Pain Association Penney Cowan says they “are written off as growing pains or something they will simply get over” because doctors haven’t been trained in recognising invisible disabilities in younger people.
Emily is a 20 year old in her second year of a Bachelor of Primary Education at Flinders University. She has a part time job and hangs out with her friends as any young person does, but she also has Juvenile Idiopathic Arthritis (JIA). It is a chronic rheumatic disease that occurs in childhood, before 16 years of age. It is characterised by persistent joint pain, swelling and stiffness with complications including, joint damage and eye inflammation. Less than 1% of Australian children are affected.
Emily was diagnosed at 12, she said that the “process for diagnosis was long”.
She said that “Many doctors that we went to when trying to get a diagnosis told us that it was just growing pains and it would go away with time”. Once she was diagnosed she would go with her mum to numerous doctors’ appointments where she had doctors telling her that she had more pain in the morning because “she was just trying to get out of school”.
Friendships can be difficult when you have an invisible disability, your ability to have a normal teenage experience is sometimes limited. Emily spoke about her experience, “I am lucky to have a great group of friends that have stuck by me during my diagnosis and have been so supportive of my journey” She acknowledged that this is not always the case and she “knows many other people with JIA that haven’t been so lucky, with friends leaving when they are unable to make plans due to their symptoms”.
Friendships aren't the only area that is impacted by an invisible disability, for Emily her JIA continues to significantly impact her education. Emily said that when she was first diagnosed she would attend school in a wheelchair. She spoke about the lack of inclusivity for people with disabilities in her primary school, “luckily my class was located on the ground floor, however my primary school didn’t have an elevator which made it impossible for me to access the upper level of the school, where the computer room and student kitchen were located” Her symptoms also impacted her ability to attend school, she would miss days of school for appointments or a ‘flare up’ causing unmanageable symptoms.
Now at University, Emily has similar issues with her education. She spoke about having to “miss some days due to my symptoms, making it a lot more difficult for me to keep on track than it would for my classmates.” This is often true for other people with invisible disabilities, they are seen to be ‘fine’ by peers and staff. Students can receive disability support services, but this is not an easy process. They often are requiring numerous doctors notes and letters from specialists, which is largely inaccessible when waitlists can be months or even years.
Limitations around education and social inclusion are perpetuated because of the invisibility of JIA. The access and support that visibly disabled people get is often not received by people like Emily. She specified that people, “Often judge if they see me using a mobility aid”. People may also not offer a seat on the bus, not understand when she cancels plans or undermine her symptoms. Like when seeing doctors, Emily says, “When I open up about my symptoms, a lot of people doubt that my symptoms are actually as bad as I describe them because they cannot see me being in pain”.
Emily said even with all the negative aspects of her invisible disability, there are positives. Community has been something that has helped her immensely, “Shortly after I was diagnosed I met some amazing people who also have JIA. I didn’t know it then, but these people have become some of my closest friends today. It is incredible to have friends who understand what JIA is like and how it can affect our lives”.
Being a young person is often confusing and challenging but having an invisible disability adds a more complex layer to Emily’s life that other young people don’t experience.
It can be difficult to understand what to do to support and create better access for people with invisible disabilities. One initiative that is being implemented across the world is the Hidden Disabilities Sunflower. It can be a lanyard, bracelet, pin with sunflowers on it. It’s a simple tool to signal that you have a disability or condition that may not be visible, also signalling that someone may need support or understanding.
Since the program’s launch in 2016, thousands of businesses and services including Adelaide Airport have implemented it. The Sunflower can be seen in Brazil, Belgium, Canada, Denmark, Ireland, Latin America, the Netherlands, New Zealand, the UK, the UAE, the USA, and Australia.
To create an accessible and safe space for friends, family and strangers living with an invisible disability, remain open-minded and be considerate when asking to help because they know themselves best. If you have a family member or friend that has an invisible disability it may be beneficial to learn about their type of disability and how it can affect them; this can lower the burden of trying to inform you about their symptoms. For example, Emily’s friends have made sure to understand her symptoms and how they can adjust plans to ensure that she can still be involved.
Young people with invisible and visible disabilities have ups and downs, but they want to be like every other young person. Living with a disability is not tragedy, it’s just another way of being.
References
https://www.lifeline.org.au/real-experiences/community-perspectives/living-with-a-disability/
https://www.australiawidefirstaid.com.au/resources/understanding-invisible-disabilities#:~:text=Prevalence of Invisible Disabilities,-Invisible disabilities are&text=In Australia%2C there are 4.4,know falls into this category.
https://autisticminds.org.uk/blog/how-can-i-help-someone-with-a-hidden-disability/