OPINION: People in the UK need to be far more aware of invisible disability
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Disability activist and blogger Sophie Mattholie who is also chair of the Broadland Youth Advisory Board explains what it’s like to have an illness that’s not visible
Many people see disability as something that happens to a person overnight – a freak accident, a surgery gone wrong, and that’s it. I did too, until it crept into my life gradually, hardly noticeable at first, but then it hit me all at once. I have a chronic illness, currently undiagnosed but suspected to be a connective tissue disorder.
It causes symptoms like chronic pain, fatigue, heart palpitations, dizziness, and nausea. This has had a huge impact on my life: I have to plan everything I do to prevent flare ups, I’ve missed out on events such as concerts, and some day-to-day activities such as showering can be very difficult. However, if you walked past me in the street, you probably wouldn’t know any of this. My disability is largely invisible, besides the walking stick I use sometimes, and to most people I appear healthy.
There is a dire need for more awareness around invisible disabilities in society. Research estimates that 19% of working age adults and 8% of children are disabled in the UK, many of whom will have invisible disabilities.
Disability is intrinsically associated with mobility aid use, especially wheelchairs. This causes many issues for those of us with invisible disabilities. Many are frequently challenged while using accessible toilets, blue badge spaces, and priority seats on transport by strangers who decide that we don’t look sick enough to need them.
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While this may be well meaning, from a place of wanting to make sure only actual disabled people use these accommodations, it’s really harmful. The fear of being challenged and having to justify myself to a complete stranger makes it so much harder to actually use these things, even though they would make my life so much easier.
It took me months to come to terms with using a walking stick: firstly because I hadn’t seen other young people using them, and secondly because I was so scared of getting questions from passersby.
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Being young and disabled also brings a different set of challenges. It’s the time where, generally speaking, you’re the most similar to others your age. You all go to school, have similar hobbies and challenges. But when you get sick, it places a divide between you and your peers. You can’t keep up with them anymore. All of these exciting things - university, getting jobs, travelling, communal living, driving lessons - can be just slightly out of reach. It’s so incredibly isolating to watch these things happen while you’re unable to join in.
Trying to navigate the world within my own limits, while surrounded by people who seem to have no limits at all, makes me feel like I’m being left behind. My experience of adulthood may also be vastly different to my peers: maybe I’ll never know what it’s like to be able-bodied, to travel without a care in the world, to get a job without thinking about reasonable adjustments and pacing. It’s a bitter pill to swallow, that sadly is part and parcel of being disabled.
There’s a tendency in society to divide disabled people into two categories: the inspirational superhumans, and the tragedies. In reality, most of us are neither of those things.
My life is not a tragedy because of my illness, nor am I inspirational for living with it.