The "I'm Not OK" Manifesto
I'm an angry disabled hobbit on the internet
It seems to be an unspoken rule, especially here in the south, that when someone asks you how you’re doing, you’re supposed to say the phrase “I’m fine.” For many years, this has become almost second nature and slips from my mouth before I even realize what I’m saying. And I’ve come to hate it.
I have three devastating chronic conditions that have turned my life completely upside down. So, I have days where I am, most definitely, NOT OK. But, when asked, I almost always say “I’m fine.”
But why? Because, I do this to make the person I am talking to more comfortable about my situation, even if saying this makes me feel less uncomfortable. I say it so that I don’t sound like I’m complaining. But is it really complaining if I something very valid to complain about?
When I do talk about what is happening to me, I feel it is more of a statement of fact. But my fact tends to shock others and it makes things awkward. Telling the truth makes people uncomfortable and I don’t understand why.
Instead of my usual reply, if I was to tell someone how I’m feeling, this is how the conversation would actually go:
Person 1: “Oh, Hi Meg, How are you?”
Me: “Actually, I’m having a lot of pain in my shoulders today that feels like I’m being stabbed repeatedly. Also, my body has decided to reject food again, I’m going to start filter feeding like a sponge soon. Oh, and every time I’m on my feet longer than five minutes, I feel incredibly dizzy and faint.”
Person 1: . . .
And then we would part, in uncomfortable silence. But, I would have told the truth, and made someone listen to me after so long of hiding behind something that felt so wrong saying.
I've lost friends because of this. I've had relationships end because of this. Because I told someone "Hey, I feel like shit today" instead of lying. I'm tired of lying. No more. NO MORE, I SAY!
I've decided that I'm no longer going to say that phrase unless I really mean it. Instead, I'm going to tell people how my day is ACTUALLY going. I WANT to shock people to attention and accessibility. I'm so tired of being quiet. I'm sure I'm not the only one who is tired of the "I'm fine" lie. In a world where comfort is one of the things we hang on to more closely than anything else, I’m ready to make someone uncomfortable today. So, I’m writing this manifesto. (Yes, I know, very fancy way of saying "I'm ranting on the internet")
Are you uncomfortable by the fact that I'm 25 and walk with a cane? Are you uncomfortable about the fact that I'm young and live with chronic pain or is it the fact I could pass out due to another of my chronic conditions? Are you uncomfortable that I have tried yoga and that didn't help? Or CBD oils? Or that I find your advice to exercise insulting? Well, so am I. I want you to know that and I want you to listen to what I have to say. And not just me, but every disabled person around you. You have a responsibility to listen to them. If we make you uncomfortable, then help us make the world more accessible. Help us find answers, correct diagnosis. Stand with us and make others (doctors, politicians, everyone) listen to us.
I'm ready to make the world uncomfortable to start changing it.
Thank you for listening to my angry ranting on the internet.