From the outside, I appear to be a ‘young and healthy’ mum of two beautiful children. Scratch the surface, and what began as a chronic illness became debilitating – transforming itself into a disability.
The fluctuating and dynamic nature of my disability, places limitations on what I have energy to do every day – aligning with the spoon theory.
I cannot work a full-time job, nor feel like my 23-year-old brain can keep up with my aspirations as some days it struggles to see through the ‘brain fog’.
When I became unwell, my appearance didn’t change, my energy levels and capacity did. While I experienced disbelief at how my life transformed, it seemed society’s ‘disbelief’ at my circumstances was far greater:
“You’re too ‘pretty’ to be unwell”
“Don’t be lazy”
“Just push through it”
“You’re a mum, being tired is part of it!”
“*Insert accommodation* is meant for people who need it – you don’t, you’re young and healthy”
I quickly learnt that having an invisible disability seemed to come with an invisible companion – ableism. Discrimination that would not only invalidate my experience but cause me to not seek the accommodations I needed or feel a part of the community in which I belong.
Ableism takes many forms, however I experienced this most in the assumptions that my disability had to be visible for it to exist, and in being questioned if I am ‘actually’ disabled. When did people with chronic illnesses that limit movement and/or activities, begin thinking there was a threshold of being ‘disabled enough’ before accessing support?
I’m officially four years into this. I have Postural Orthostatic Tachycardia Syndrome, Thoracic Outlet Syndrome and Bipolar Disorder.
Ableism has put me at risk. It has made me feel like I must hide the fact that I am someone living with a disability to avoid the rude and sometimes aggressive commentary, and dagger-like stares. In this hiding, I push myself too hard without seeking or accessing accommodations. Trying to pretend that I can function as a ‘normal’ woman my age can have serious repercussions for my health.
Often doing simple tasks, like grocery shopping, getting petrol and attending events – anything that requires me to be standing or active – can lead to me fainting. You may find me crouching while pretending to browse the bottom shelves at supermarkets, desperate to give my body a rest and decrease my heart rate and save myself from fainting.
I have attended standing weddings, where minimal seating is reserved for those who ‘need it’, however my experiences of discrimination previously meant I chose to risk fainting over interrogation.
When I pick my child up from school and don’t have the energy to walk an extra 300 metres to the crossing, I endure verbal lashings from other mothers. To add to school challenges, my son was recently excluded from a party, as another mother thought I was ignoring her, when in reality I was drowning in ‘medical admin’ and illness.
I do my best to educate those around me on invisible disabilities, and the impact of the ‘everyday’ ableism I’ve referenced. However, to make a change, I want to encourage others who may resonate with what I have shared to know their experience of disability is valid. We shouldn’t have to hide in fear. We should not have to question our experiences. We should not have to justify ourselves to strangers. And we certainly should not have to pretend that we are someone that we aren’t, in order to feel safe.
