As a person living with a chronic illness, the most humbling part of the experience for me is observing the amazing effect it has on other people. I am often asked, ‘Kaitlyn, what is the best thing about having a functional impairment?’ and I can say without hesitation that it is the magical way I inspire able-bodied people to divinely manifest medical knowledge. Don’t have myalgic encephalomyelitis and know nothing about it? Well, get excited, because coming into contact with someone who does is all you need to become an expert. I clearly haven’t learned anything, because I’m still sick, but the least I can do is help healthy people fulfill their destinies. You’ll need to know how to handle your newfound expertise, so I have compiled a handy guide.
Give advice early and often
It’s never too soon to give unsolicited advice! When someone you know vaguely or have just met outside a Grill’d burger bar mentions that they have this chronic, incurable illness, it’s important to know that they are implicitly asking for your opinion on it. Even – and this is crucial – if they haven’t asked. Don’t make them beg for your input. If they’re openly identifying as having this difficult-to-diagnose medical condition, they’ve probably only recently decided that they have it and they need to be put straight. Now that they have you, together you can workshop some solutions to their predicament.
Put on your detective hat
Are they really sick? Scan them for signs of bandages and walking sticks. How serious can it be when they are standing right in front of you, brazenly holding a conversation out in the wide, open world? You must rule out all other possible explanations. If you don’t like them much, they are probably one of those pension-grabbing rorters the newspapers are always telling you about. If you do like them, it may all be an honest mistake. They seem nice, so it’s time for a few gentle, probing questions to find out how they could fuck up their life so badly.
Ask them about their daily habits
‘Interrogate’ is such an unpleasant word. But you have to get to the bottom of this because it doesn’t make sense for an illness to go on for more than a couple of weeks. The default state of a human body is perfect health, like one of those light-blue alien giants from the film Prometheus. If this person’s body isn’t functioning properly it must be due to extreme mismanagement.
Let them know that you are aware that they are not competently caring for themselves by asking if they are meeting simple needs like ‘getting enough sleep’ or ‘drinking water’. These are essential parts of a human life and it could be disastrous if your new acquaintance has not realised. They thought they could live a healthy life without ever drinking water?! They are being destroyed by their own hubris, just like those blue muscle aliens when they were wiped out in the film Prometheus.
Accept your new role as a healer
After some discussion, you might determine that they really do have some kind of chronic illness, just like they originally said. How sad. You feel sorry – of course – that after years of living with a complex set of physiological symptoms, they are somehow still struggling, but they’ve met you now and everything is about to change.
There is a reason that they are sick and you are not. I guess not living with constant, disabling fatigue, pain and nausea gives you the power to be objective about these things. Maybe the only thing standing between them and a happy, healthy life was for you to mention the healing properties of coconut oil. What if they completely recover as a result of this conversation with you? You’d be a hero! The world needs you.
Do most of the talking
Gaze at the sky or ceiling while you wonder aloud ‘what it actually is’. Can anyone really know what a chronic illness is? Is it even a real thing, or is it all in people’s minds? These are big questions and deserve your full attention. Make sure everyone can hear you while you ponder.
People with myalgic encephalomyelitis probably always have family members and doctors around them ‘listening to everything they say’ and ‘supporting them without question’. You haven’t personally researched it but ME probably doesn’t have a history of being dismissed by medical and layperson communities as being ‘not a thing’, thereby delaying the recovery of countless ME patients and actually endangering lives. I bet nobody ever died of ME because their condition wasn’t taken seriously.No, the real danger here is that you allow this conversation to move on before you’ve suggested several brands of antidepressants, your yoga instructor, and fresh air.
Don’t worry, they’ll thank you later
Sometimes, the sick person you’re having this great conversation with outside Grill’d might not seem grateful for your instructive attentions. This is not fair; you are only trying to help, and good intentions are like a wizarding cloak that protects all manner of behaviours. They could show a bit more appreciation. You didn’t have to acknowledge their illness (because, frankly, they don’t actually look that sick), but you took time out from eating a burger to think about them.
Myalgic encephalomyelitis affects around 17 million people worldwide and costs the Australian government $416 million per year, so you need to make sure that YOUR taxpayer dollars aren’t being wasted on some goof who didn’t think to try pilates.
Give yourself a pat on the back
You did it! You interacted with a chronic illness, I mean, person. And all without having to confront your own mortality! As your friend/vague acquaintance slumps against the wall, most likely overwhelmed by the hopeful possibilities you have installed in their heart, be careful not to offer any physical assistance or comfort. You don’t want to be presumptuous. It must be unbearably awful to be them, after all – just terrible, I mean, god, you don’t know how you’d even go on – and you wouldn’t want to treat them any differently to a Normal. Just rush the conversation along to other topics and let them drag themself off to a quieter room, probably to text their family the good news about how it’s all going to be OK now.