[I wrote this piece for The Huffington Post’s new ‘EveryBody’ campaign; see the original post here!]
“What happened to you, then?”
There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a walk in the park, especially when your illness is invisible. At times, looking like every other person around me was a blessing, but more often than not, it led to some really problematic encounters.
Like others in my situation, I’ve experienced all the usual judgments: people telling me I don’t look ill, I’m too young to need a seat on the bus, subtly implying that people like me are lazy… the list goes on. Sadly, I was prepared for these comments. Those with invisible conditions have been facing these attitudes for years.
What I wasn’t prepared for was facing similar situations once I became a wheelchair user. Accepting that I needed a mobility aid at the ripe old age of twenty was difficult, but I naively consoled myself with the thought that at least now, maybe people would take my physical health needs more seriously. What didn’t cross my mind at this time, however, was that the person sat in the wheelchair still didn’t look ‘ill enough’, to satisfy the curiosity of the general public.
During my first trips out of the house with George (the wheelchair; you always have to name the wheelchair), I was hyper-aware of the people around me. I felt people’s gazes on me as they slowly looked me up and down as if trying to identify my ailment, and I felt their shock and disbelief as I crossed my legs and they realised that no, I wasn’t paralysed. The thing that really baffled them the most though, and continues to baffle people today, was when I stood up from my wheelchair to transfer to a seat. The impulse to make light of it and exclaim ‘I’m healed!!! It’s a miracle!!!’ tempts me every single time.
Finding humour in these kinds of instances is my coping mechanism, but often this gives rise to its own problems. I recall one situation where I was viewing flats with a letting agent and my parents. I’d stood and talked to the agent for a few moments without my wheelchair and without mentioning my disability, but then climbed in my wheelchair that my dad had brought around, ready to view a property. Afterwards, I found out that the letting agent had been utterly taken by surprise by the wheelchair ‘because I seemed so cheerful’. They couldn’t get their head around the fact I was silently suffering, because I talked and laughed and smiled like any other person.
Another time, my best friend and I were out shopping, and laughing our heads off about something or other as she wheeled me around a gift shop. The shop owner took this moment to approach us and exclaim loudly ‘what happened to you then?!’. Now, this is a question I get a lot, and there’s no doubt in my mind that this is because people expect a funny story: I don’t look ill, so people expect a drunken fall on a crazy night out, or maybe some sort of temporary waterskiing accident. The problem is that I still haven’t found a way to answer this question without making the other person feel awkward. So when I replied ‘haha, long-term illness!’ with a polite little laugh, they looked like they wanted the ground to swallow them whole. ‘Well’ they replied, gingerly patting my arm and trying to salvage the situation, ‘at least you’re still smiling!’. Because obviously, people who are ill aren’t supposed to be smiling or laughing or having a good time. Unless, of course, they’re one of the inspirational sob stories that healthy people use to make themselves feel better. But that’s another issue for another time.
The point is that invisible illness is an ongoing issue that there can never be enough awareness of. Even when visible mobility aids are added into the equation, if you don’t appear to be miserable and suffering, or have an obvious physical impairment, people are inclined to doubt your condition.
I hope with everything in me that one day this won’t be the case, and those with chronic illnesses, including those without mobility aids, will be able to sit in reserved disabled seats, or move their legs in their wheelchair, or God forbid, laugh and enjoy their life, without judgment from others. But for now, we need to do all we can to help the healthy population to understand; just because somebody doesn’t appear to be ill, it doesn’t mean they’re not suffering.
You can find out more about me and my chronic illness story on my About page. Are you a fellow invisibly ill person who uses mobility aids? I’d love to hear other people’s views/experiences!