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For Hannah Bennett, even a trip to the supermarket in her car leaves her with an anxious decision to make.
Should the Sydney speech pathologist park in a disabled spot and risk being abused, or park further away and potentially aggravate her multiple sclerosis symptoms?
“I’ve had some very colourful words yelled at me, things just by complete strangers,” Hannah, 24, told news.com.au.
“I’ve had notes left on my car with all sorts of horrible things written on them.”
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Hannah was granted a disabled parking permit at age 21, one year after she woke up blind in her left eye.
The then-20-year-old was diagnosed with MS, a chronic illness where nerve damage disrupts the body’s communication with the brain.
“It was just a lot of shock really, a lot of shock and worry,” Hannah said of first learning her diagnosis.
“I’d heard of MS before but I didn’t really know much about it at all. I was worried that I would be wheelchair-bound for the rest of my life.”
Since being diagnosed with MS, Hannah has been able to manage her symptoms through medication and physical therapy.
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Hannah feels “extremely, extremely grateful” that she doesn’t need a wheelchair but relies on a walking stick when she needs to as it helps with one of her biggest symptoms; nerve pain in her legs.
When it is severe, it makes her feel like her legs are on fire and long distances are “really tricky”, but Hannah has to constantly weigh up whether it is bad enough to park in a disabled spot.
“I avoid it completely, unless I absolutely have to,” she said. “I get so worried about the things people will say or do or yell.”
For Hannah the negative experiences have fed the anxiety she has had since she first applied for the permit and worried she be judged for using it.
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“It’s often people, they’re just driving past and you get out of the car in the very obvious disabled spot and they’ll yell out something like, ‘Oh you don’t look very effing disabled to me,’ or things like that,” she said.
“They don’t have the guts to come say it to my face or let me explain it; they just drive by and yell it out their window.”
But it has also prompted Hannah to share her story on Instagram and she started her page @rrmslife to shed light on what it was like for those who lived with an “invisible” illness.
“I shared one of the notes on my Instagram a year or so ago and so many people commented and said, ‘Oh that’s happened to me,’ or ‘Horrible nasty people commented to me,’” she said.
Her Instagram page has also connected her to charity Kiss Goodbye To MS and this May, for the third year running, Hannah will be taking part in The May 50k.
The May 50K invites everyone to run or walk 50km throughout May while raising funds for life-changing MS research.
Hannah hopes to raise $2000 while walking with her dog Patch and also raise awareness for an often-invisible illness.
“You can’t always see chronic illness or chronic disease as well as disability – people can be disabled without having all the obvious features,” she said.
“Particularly with MS, it’s really important to me that people realise it can really be quite literally invisible.
“(It can be) a perfectly fit, perfectly healthy looking person, young person, but on the inside they’re in a lot of pain.”
For more information about The May 50k or to register, visit their website
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