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This is the sixth part in a series in which I open up about living with chronic illness. Here are part one, part two, part three, part four and part five.

I avoid telling people about my condition until the last minute I can (and sometimes after). After a long time of facing faces
politely frozen
assured of their competent allyhood
withdrawn and contemptuous
even from people whose job it is to assist me – and it’s not practical, I know, but it’s a (non)coping tactic of mine – I don’t want to entrust people with this bit of information. This is the first part of a communication breakdown I can’t quite articulate
through the mild but constant mortification
through the unspoken understanding I should be demure if I’m expecting to get any help at all.

Hi there, darling. You’re looking well. Some of them are trying to suss me out: maybe she was faking all along; maybe I don’t have to bother with something out of my experience anymore? Maybe some of them are trying to cheer me, but I have trouble telling the difference at this stage. (It’s like compliments: all the compliments are nice but insults cut deepest.) And why am I darling all of a sudden? I am not your baby girl, your sweetheart. I’m not your daughter, not your lover, not your plaything, you don’t get to mollify me smooth me over neutralise my threat with sickening sweet words. Sometimes I look well, the blood may pool away from my face tomorrow. And you can’t see my physical pain, my memory loss so that I’ve forgotten your partner’s name while I’m here talking to you (like my multiplications tables next week, or, last night, three times over, where I put my phone).

I know something you should try. You have a cure for me, something to ease it? Do you think I haven’t thought of it? I don’t want your suggestions (you’re insulting me). If I did, I would ask. But I can’t complain because you were being nice and I do want to get better, don’t I? Well?

How are you feeling? with your faux-sympathy. Maybe you think you’re being genuine, but you’re like the middle-class Westerner giving charity for the cred with their peers. If you really meant it, there wouldn’t be the head tilt, the pursing of your mouth, the drawing back (that’s the worst).

‘Are you feeling any better?’ you say, every time I see you (as some of them do). Repeating yourself repeating yourself repeating yourself repeating yourself. These are often the people to repeat whole conversations, cover ground we’ve covered periodically for years. Oh dear. How did it start? That’s unfortunate. Yeah, my life is a misfortune in your eyes, you’re wondering why I don’t just disappear already? They continue: And you’re sure there’s nothing you could do? My cousin had something kind of similar. Poor thing, totally isolated from the family for years. Keep your chin up!

What concept is it you’ve built of my life in your head? It doesn’t resemble my life. And worse yet:

Are you going to get better?

Shit, you know. I don’t know. I thought I would, I was getting better, then WHAM four years ago (it can’t have been that long, this is not me, this is for other people). I don’t tell you these things. It’s none of your business. How fucking insensitive to ask me that? If I felt like opening up seconds ago, I won’t now. Because it is obvious to me that you don’t really care. Or – rather, better – you care, but like a passing driver gawking at a traffic accident.

I hate watching your eyes glaze over now that you’ve seen who I really am, the other. There are people who, every time I meet them, my condition is what they jump to.

I am not an object of fascination. I am mine, I am mine, I am mine.

This is where

But then but then:

It’s not real, is it?

You want me to apologise for my body, my presence, my existence blighting yours, the insult to your comfortable life. You want me to
I will shut up with shock for a minute – ‘yes, of course it’s real,’ I’ll say, with increasing emphasis over the years as I grow strength in my self – then my eyes will grow glittering and false like yours. I will shut down, but I will shut down my respect for you, my investment in this conversation. Get out of my life.

I will not speak to you. My responses will be to my needs, my way through the world. I will not be silenced.