Personally, I’ve never experienced the “but you don’t look sick” thing that I know a lot of spoonies go through. This is generally because I have a pretty good support network. However, arguably, it doesn’t matter if people don’t say it, if they react to you as though you are well. If you neither look nor act sick, they treat you as though everything in normal, when it really isn’t. It’s an awkward situation, the not knowing how to be sick; how to act, what to do, what not to do. Because it then makes it awkward for people to know how to act with you, how to be with you.
Here’s a cute cat because it is both cute and a cat.
Sometimes I think I’ve got this. Sometimes I feel like I’m the most positive person I know; that I take rough with smooth and find a way of dealing with everything that chronic illness and disability throws at me. But then when I’m here, in bed, feeling horrific and drained and frustrated, it feels that the rest of the time I’m just being blasé. I’m never prepared for the switch in gear that occurs before and around a flare. Never. I should be; I expect flares, I know they’re coming. Still. It always floors me when suddenly the little things begin to slip. First, I get less sleep. Then, I can’t get up at the usual time to eat breakfast. And finally I start sleeping more in a morning. When you add all these things together—things that might seem small and insignificant—I start to slip a little. I need to find a way of not being utterly crushed whenever I can’t maintain my own baseline of normal. It isn’t what someone healthy calls normal. Well, it actually probably is, and I do it anyway, and maybe that’s a contribution to how often I flare. If you compare my day with those of people I know, mine shapes up as being busier—and that’s not even with adjustments for my illness. Nobody I know works full time. But…Actually I kind of do? I get up and eat breakfast and I go straight to my desk, where I will be, studying or working on writing or something related to writing all day. Until between five and six where I pull away. All day. Absolutely all day, every day. Most of the time I’m not dressed and a lot of the time I don’t make meals for myself because that would be a strain on my spoons. So there I am, all day at my desk. I can only even manage this because I don’t have to get dressed or go out and even if I get very little done due to pain and fatigue, it’s OK because it’s not a job and nobody can fire me or say I’m doing well enough.
And there are some days where I change up my desk for bed, where I sit in bed on my laptop all day, doing the same work as I would be at my desk. I’m well aware I push myself hard. I can do so only within the narrowest of margins, so I do it. Probably too much. There are certain things I don’t do as often as I might, if I didn’t push myself so hard. Like socialising. It is easily one of the most exhausting things in my life, to socialise. I am literally the definition of an introvert. I find spending time with people quite contrary to my interests most of the time. When I’m at home, I can write and play the games I like and read and play one-to-one DnD-esque games with my brother. I can do none of these things when I’m not. And then there’s the fact that I always do too much when people are here.
I’ll make food. I’ll offer to do X or Y or Z and then remind myself later that I am chronically ill and that oh, Leo, why did you say you’d do that? My mind works in ideals sometimes, forming the things I say and want based entirely around not being sick or not being socially anxious.
“I’ll go to this event! Yes!” / “I’ll do all the research and groundwork to help you with X!”
Way to go, Leo, well done in opening yourself to a world of guilt. Because you’re not going to go to the event because you’re terrified and you’re not going to have the energy or time to research mundane things that any idiot could find if they just Googled! I only even offer in the first place because I just know that if I don’t, it won’t get done. And I want it done for them so they can be happier, better—whatever it is they want. Unfortunately, though, the role of a life-coach is exhausting, especially when you’re not actually a life-coach and you’re not being paid. It’s hard to stop, though. Very hard. It’s just what I do. I make solutions happen. I tell people what I know they need to hear, what they deserve to hear from a friend.
I have a weird relationship with how I see my illness and how I think other people see my illness. Sometimes I genuinely think people in my life forget how bad I am or forget what I’m living with, based on what they see of me. It’s further than the ‘but you don’t look sick’; it’s ‘but you don’t act sick’. And oh, sure, people don’t see me act sick—but that’s because of the inordinate amount of spoons I use to function when people are here. I don’t know how to stop that. It’s not exactly their fault. It’s more of a joint responsibility. Mine, too.
If you’re in a wheelchair, people get that you have limited reach, that even if something is close, you might not be OK to stretch and reach for it. If your arm is broken, people pass you things. People respond to what they see rather than responding with an education and an awareness. And I just can’t ask. I can’t.
I never feel embarrassed or guilty for being sick, ever. Yet around my friends, I’ll stretch and reach and bend and stand and cook and offer all kinds of things, because I… I’m not sure. Probably because in the beginning I wasn’t treated as though I was sick. Because I didn’t really know I was. I didn’t know chronic illness existed. So the mentality never changed. Because my being chronically ill as a concept just sort of formed and tiptoed into existence. It was never a revelation, never something that changed.
I’m not very functional through the pain. The only reason I manage so well is my brother. I need lots of help, lots of little things here and there. And for some reason, I don’t ask for them when we have friends here. I’m too awkward and embarrassed and I don’t even know, to act as I normally do.
It’s not the same with everyone in all situations. Things are easier with fewer people. Things are, depending on me, mostly normal with our best friend. But I know if I met people I talk with on Twitter and Facebook, people who know I’m sick, I would act normal and downplay how bad I am. Slightly ridiculous as I’d likely be there in a wheelchair, but there we have it.
Needing so many tiny, seemingly easy things done for me makes me feel lazy and I don’t know why. Nobody has ever called me lazy in my life. I’m the opposite of lazy. I’m a doer. I do things. I used to tidy rooms for fun. I’m not lazy. But there’s this ridiculous fear of being seen that way. And I don’t get it. My friends have never treated me this way. Never.
I don’t get a lot of support or acknowledgement from my mum, but then we have a strained relationship and she is like an alien to me.
Here is another cat because it is cute and a cat.
Sometimes I open my Fibro-Boy twitter and stare at the screen, not knowing what to say or post. Most people on my time line complain and vent (and that’s absolutely fine) but I just can’t. I don’t want to vent. I don’t to scream into the void. I want people to listen, to ask, to talk to me. I don’t need to vent, I need to communicate. So I don’t tweet much at the moment from there. It just feels so pointless. I guess I want my illness acknowledged more. Sometimes I don’t think people mean to, but it just happens, but an invisible illness is so easily forgotten. People trust their eyes and believe that which they see. They look at purple and see purple, even though they’re well aware that inside that splash of purple is a convergence of blue and red. Depending on the shade of purple, the red stands out more, and sometimes the blue. Sometimes the hue is so true that all you can see and perceive is the purple, as if it exists in and of itself with no further contribution. But, that colour is still, ultimately, red and blue. There’s a little irony here, in that purple is the colour for fibro and other chronic illnesses.
There’s this difficult situation where I want people to take care of me more, but I don’t know what I want or need and even if they tried I’d be just as likely to brush them aside. I am only good at accepting spontaneous care and attention. If it seems incited by something, then my barriers shoot up and you’re left dealing with a wall. I’m not sure why… it just happens. It’s as if I want everyone around me to be a goddamn magician. And yet, sometimes I feel like I’m a goddamn magician, so why can’t I be given the same? And here we come right back around to the “I don’t even know what I need or want” part. That’s the complete truth. I don’t know what I want, what I need.
A lot of it hinges with the communication part. But, I can’t reach out to people to talk. Honestly, it’s not what any of us do. Of all the people I know, nobody comes to me and says “wow, I feel like shit and have a lot of my mind” and say they need to talk. Nobody. And trust me, I talk to all my friends. Talk. Capitalised. So that’s why I don’t just hit up a friend and launch into a tentative “Hey :(” and hope against hope that they’ll ask what’s up and give an offer of someone to talk to. I don’t think I’d be able to stop the “yes, it’s fine, it’s fine!” part of me from taking over, anyway. It always seems to worm its way in there. It’s like I don’t know how to accept…what? Condolences on being sick? Reassuring words that it will be fine when it won’t but it will anyway? What are people supposed to say?
I don’t want to hear “this sucks for you”. I know it sucks for me, but I also don’t want sympathy. I don’t need it. Yes, it sucks ass. Yes, it’s hard. And… so… what? What difference does having people around me saying that make? So it’s evident that I don’t need that. So, what do I need?
Well I haven’t the foggiest. I want to know how to act whilst being sick (so, all the time, then) so that people have a set thing, a base perception they get to work off of. Most of it comes down to me, not all of it, but a lot of it does. I imagine there’ve been times where people are coming over and they’re all mentally psyched to Help Leo Out Today!! Yes! This is it, this is the day where I get to go help my disabled friend Do Things and Have Fun and–
Wait. What? Why is Leo making lunch? Wait. Why– No! Why is he getting up; let meee! This is my chan– Oh. Already done. Okay. Next time; the next time he needs something I’ll definitely do it and–
WHAT did I blink and miss something why he is standing up again?! Oh, OK then. Um. Right. I’ll just sit here then, and not know what to do or what not to do to make you feel crap. Crap! How do you make someone disabled not feel like crap? Oh, shit – should I offer to do more or will that make him feel like I think he’s disabled? But… he is? Yes but that’s a bad attitude, right? Treating someone like they’re not able. BUT he’s not?? Argh this is so hard–
WHAT IS HE DOING NOW OH MY GOD.
Maybe it’s not like that… but that’s sort of how I imagine I’d feel if one of my friends was me and I was placed in their position. I have no idea how to act, no idea how to express how I feel and what I feel and when I feel when it comes to fibro and disability. I used to think I did. It’s like I know all the words of a language but don’t know how to use the language itself. I can say a few repetitive sentences and precious little else. It’s all from a script. And it’s a shit script.