Column Road

My “fake” disability

By Indigo Jones

November marks the beginning of Invisible Illness Awareness Month, and in 2019 there is still a need for awareness now more than ever. Within this article I will discuss my own experiences with an invisible illness, and how we should react to and treat those with this variety of illness. Invisible illnesses can vary whether that is a mental illness, or a physical illness that can’t be seen straight away. The stigma surrounding these illnesses stems from the lack of awareness and education on what they are and how to address those with them.

Although the title of this column sounds incredibly like ‘clickbait’, I didn’t intend for it to be, my intention was to demonstrate what people believed my illness was, which is “fake”. At the age of 5 I was diagnosed with Perthes Disease, a hip condition which according to the NHS in scientific jargon  means that,“part or all of the femoral head (top of the thigh bone: the ball part of the ball-and-socket hip joint) loses its blood supply and may become misshapen. This may lead to arthritis of the hip in later years.” Symptoms of the condition aren’t easy to notice, my parents noticed there was something wrong when I consistently walked with a limp and complained of pains coming from my legs. Children who suffer from the disease are able to have surgery, although my doctors wanted to see how my body would naturally recover. Therefore, instead of missing school whilst recovering in hospital I persevered through the pain and to minimise said pain I was advised to use a wheelchair until my hip naturally resolved the problem.  This meant attending hydro and physiotherapy sessions twice a week, coping through the pain and then catching up on what I missed in primary school those two days a week for around three years of my childhood, and after that I remained on crutches until comprehensive school. 

Being in a wheelchair seems like a pretty obvious indication that somebody has a form of disability, you would be wrong to think that everyone assumed this. Although the wheelchair may have been visible, my illness very much wasn’t and therefore everyone’s first assumption was that I was faking it. During most of my childhood whilst suffering with this disability and being in a wheelchair, most children and adults doubted that I even had anything wrong with me. My family and close school friends understood my condition, and how to go around what I needed to live an accessible life, but parents of fellow students and even the teachers lacked a belief in my condition and often thought I was faking it. I would hear teachers or teaching assistants gossiping about me and my condition saying things like “I saw her running around earlier” or “She was sat on the floor”, demonstrating how little they took note of my condition and the fact that I was a young child who often didn’t want to stay in my chair. My illness wasn’t taken seriously, and former carers took advantage of that by saying things like “Can’t you just walk down the stairs” to make their jobs easier. There was never a lift or a ramp built in the school during my time there, meaning that the school never was accessible and they did not accommodate to my disability. These very small changes can alter a child’s school experience as well their experience growing up with a disability.

It was only towards the end of primary school where I had a teacher and carer who truly sympathised with my condition, and it made such an influential difference on the remainder of my primary school years. Don’t get me wrong- students, teachers and parents around me still misunderstood my condition, but this small change in understanding makes the world of difference. When going to comprehensive school my headmaster had one final meeting with my mother where he stated that he now understood the pain I had gone through and the restless nights, because now his dog had been diagnosed with Perthes’ disease, as if that was some commiseration.

According to the NHS, Perthes’ disease is rare and 1 in 9,000 children are affected. Due to the rarity of the condition it meant that very few people were aware and educated on how it affects sufferers. Invisible illness awareness month is here for those who do suffer with invisible disabilities to raise awareness of their daily struggles and educate those who previously had no understanding of said struggles. Whether those conditions are arthritis, endometriosis or perhaps mental illnesses, the constant battle to have to argue on your own behalf to get your voice heard about your condition is an unnecessary added struggle to their disability. The Invisible disabilities association state that as a result of the disbelief many people have of invisible illnesses that it can “lead to misunderstandings, rejection by friends, family and heath care providers. It may also lead to accusations of laziness or faking an illness.” This is why they raise awareness of these disabilities, to let people know that their conditions are in fact real and they shouldn’t question themselves. We shouldn’t have to have a physical condition that is visible to the eye just to be taken seriously.

I have not written this article to share my story, but to raise awareness of invisible illnesses and shed light on how ignorance towards these disabilities only make the lives of those suffering with them more difficult. I hope that no child had to be made to feel guilty for their condition and suffer further because of the ignorance of the adults around them. Hopefully, my own primary school learnt from their mistakes from their mistreatment of my disability and accommodate to those who need the help now. If you see a disabled blue badge or somebody use the disabled toilet don’t automatically judge them, don’t automatically begin to question them and do not automatically assume they are lying. Let’s destroy the stigma, invisibility doesn’t necessarily indicate fiction. 

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