Once upon a time, back when my ME/POTS was severe, I used an electric wheelchair on the rare occasions I could leave the house.
This was a truly difficult, no scrap that – I mean fucking awful – decision to make.
As a fitness nut and incredibly active person before getting sick, my identity couldn’t have been any further from ‘disabled’ if I tried. Yet, here I was, too unwell to leave the house most days, and too weak, nauseous, lightheaded and fatigued to walk more than a few metres.
But, how could I reconcile needing a wheelchair when physically, there’s nothing wrong with my legs? Wouldn’t that make me a massive fraud? Wouldn’t it be utterly disrespectful to ‘genuine’ wheelchair users? Ya know, like ‘proper’ disabled people who can’t use their legs?
It was SO hard to see myself as genuinely worthy of the relief a wheelchair would bring to my life. Because, to feel worthy … I’d have to be disabled. And going from ‘not disabled’ my whole life to suddenly ‘disabled’ just didn’t seem real. Not when I hadn’t had any kind of catastrophic accident resulting in loss of limbs or sensation in my legs.
Until getting sick, I didn’t really know ambulatory wheelchair users exist. I naively thought wheelchairs were reserved for the elderly and people who couldn’t walk at all. (I know … someone slap me, please!) My ME/POTS soon changed this.
Becoming disabled through chronic illness forces a person to confront a LOT of mixed feelings and home truths about their physical capabilities. Pulling on my ‘Big Girl’ pants and test driving my wheelchair for the first time was emotional, to say the least. I felt so small and vulnerable, yet also weirdly liberated.
For me, choosing to make my life just a tiny bit easier by using a wheelchair was the point when I really started to yo-yo between acceptance and resignation. It was the catalyst for a really fucked up mindset of a) joy over the mobility I’d gained, b) soul destroying heartbreak and anguish over the life I’d lost, and c) a terrifying uncertainty over what the future held.
Honestly, this post only tickles the surface of what a person goes through when deciding whether to become an ambulatory wheelchair user or not.
Buying my wheelchair was the right decision for me in the end. However, if you or someone you know is considering – or refusing – a wheelchair … approach with kindness. It takes a special kind of brave to navigate this decision.
(Thankfully, due to significant improvements in my health, I no longer need my wheelchair. However, I keep it in storage ‘just in case,’ due to the cruel and unpredictable nature of M.E.)