Rants
Most people don't want to see that I'm in pain,
which is understandable, but frustrating. I know why they do it, but it
still feels like they're just denying the fact that I *am* in pain, like
they don't believe it somehow.
I guess I got so sick of all the sites saying 'it's ok, you'll be fine, just
don't think negatively cause that makes it your own fault'. It's so false -
being sick is horrible and scary and miserable. Yes, I'm all for being
happy, but pretending that I'm ok just so others feel better about
themselves is crap. I do that most of the time, but I'm still in this dark
place that is painful and confusing, and no-one around me (other than Dren)
seems to listen when I need to talk about it - they can't deal with me being
in pain.
They just start serving me platitudes and random nonsense when all I really
need to hear is, 'Yes, this is f*****g awful and it's not fair and I
recognise that you struggle every single day just to not give up. I know
that when you're lying on the sofa watching a video that you're actually
doing all you can do, and that it drives you crazy. I know that every day
you wonder if it's going to get too much and that you continue trying to
live anyway, and that it takes courage to do that'.
I know it sounds self-absorbed, but it's still true. I know that it's hard
for people to understand CFS because it's an invisible disease, which means
that they just see me lying on a sofa, not doing anything, or sleeping all
day, or whatever. They don't know what's going on inside me. They don't
see how difficult it is just to live one day, and most of me is glad they
don't, cause I don't think they could handle it. I don't want pity, I just
want acknowledgement... does that make sense? I don't tell most people that
because it sounds so selfish *sigh* And it probably is. I don't know.
**********
I always get people saying 'Oh, I think I have M.E.' and
laughing cause they're a bit tired, or stuff like that.
A couple of other things that annoy me:
One is that people think they have a right to come and talk to you and pat
you on the shoulder in the street. I don't mind so much most of the time,
because I'm quite friendly and yay for talking to random people, but
sometimes I feel it's this amazing intrusion of my personal space. And in
lifts, they'll just lean on my wheelchair! I long to wear t-shirts that say
really bad things just to screw with their heads, cause people have this
sentimental view of disabled people. It irritates me beyond measure - on
talk shows they say things like 'one thing that always shines through a
disabled person is their strong, brave spirit'. And then they get pissed
off with us when we break down, when we do get sad about all we've lost.
And people are so afraid of seeming discriminatory that they won't
administer proper discipline. There was a kid I went to school with who was
in a wheelchair - he could walk a little, but not very far, like me. They
let him get away with anything and he was one of the closest to evil people
I've ever known. He was a bully, a drug dealer, he could beat people up or
get his acolytes to do it, and he was a viscious person. But none of the
teachers in school would ever pull him up on it cause he was disabled.
I know that people are trying to help, but for gods' sake - we need help,
not pity. I hate the look in people's eyes they get when they see me out in
the wheelchair, and the looks they give Dren, like they're thinking, 'Oh,
you poor boy, but isn't he wonderful! Taking that girl out to the shops, he
must be such a nice person'. And they get all upset when we kiss. They
give Dren these killing glares cause they think he must be taking advantage
of me. Either that or they just think it's absolutely wrong that a disabled
person should be a sexual being. I want to get a shirt that says 'I love
sex' just to see how people react. I know it's nasty, but I don't care.
One of the best days I had out shopping was when we were looking for a new
camera for Dren, and the woman working in the shop came over and asked *me*
if there was anything she could help me with. She didn't talk down to me,
she didn't patronise me, she just asked if I was looking for something in
particular. It meant so much to me because so many people just ask Dren, or
if they ask me then it's in this 'aww, aren't you sweet, trying to be
normal' voice. And they're so shocked when it's me that hands over my card
- I sometimes have to actually wave it in their face before they realise
that Dren isn't the one with the money!
