“M.E.” the comedian says, “That’s the disease where patients go like ‘Nah, don’t feel like going to work today'”.
It’s 10:32 in the morning, and I just read a blogpost of a girl I know who is very sick with the same illness (and a lot more) as I have. The illness is called Myalgic Encephalomyelitis (M.E. for short), although I think it turned out she’s got lyme instead. Could very well be, because the symptoms are pretty much the same and there is no real test for M.E. yet. Maybe I have lyme’s disease as well, who the hell knows?
This girl is a lot more ill than I have ever been. It’s scary, actually, how ill she is. Imagine being in a dark room 24/7, with sunglasses on and earplugs in and you feel like you’ve been set on fire and run over by a truck and you’re just so exhausted there aren’t even words for it. And your brain is so screwed up it just goes out half the time and you lie there passed out and shaking. This is my image of her situation, because I can’t possibly know what it’s really like. No one but her knows what her situation is like. The horror of it. And she talks about how she’s not been taken seriously for such a long time. People (and doctors!) told her to stop whining. To stop being so dramatic. That it was offensive for the people who were actually sick. Basically, they told her to cut the crap and get a life.
Oh, how we would love to cut the crap and get a life. I’m sure I speak for her too when I say we would love to get a stupid little job that barely pays the bills, because that would mean we don’t have to rely on others to pay for our food and health bills. How we would love to just hang out with a friend and talk about nothing or everything or anything at all (you’d think we’ve got all the time in the world for that; however, our brains don’t work properly and we are permanently exhausted so processing information is often too much for us to handle). Oh, how we would love to be able to take care of ourselves, to be a functioning human being, an interesting person with a job and hobbies and deep thoughts, but we are just busy getting through the day and worrying about how the hell we are going to get dressed in the morning.
But I can’t possibly know what it’s like for her. I only know what it’s like for me.
I have never received comments like that. I just assumed everyone believed me. Because why would they not? Why would I lie? Why would I not function and throw my life away, if there would be a possibility to thrive like everybody else? But this morning I started thinking about how I don’t really know if everyone believes me. And I thought about if that would matter, and yes it would. I think I’m being taken seriously by the people who matter. I have no reason to think otherwise. I know my parents believe me. I know my sister and my brother and his wife believe me. My boyfriend definitely believes me, because he’s the one who sees it all. And I know that makes me the lucky one because a lot of spoonies have a different story. It breaks my heart. I can’t even imagine what it would be like having this illness and blamed for not participating in life like you’re supposed to at the same time. But even though everyone seems to believe me (thank you for that, guys!), they can’t possibly truly understand. No one can except the person going through it. All you can do is listen.
Do you believe me?
Let me tell you something about myalgic encephalomyelitis.
This illness is crazy. Surprise visits and here to stay, lingering in the background but always ready to mess up your plans. And some weeks you’re relatively fine and you start hoping and planning, thinking maybe you are getting over it and you can start living your life like you’ve always wanted to. But then, the moment you signed up for an interesting home course in psychology, there it is again, and now you’ve spent 250 euros on something you probably can’t finish. And you worry about the money you just threw away while you’re in bed battling a flare up and wishing things were different. And you keep apologizing to your dog for not being able to give him a proper walk, even though he thinks it’s hecking cozy that you’re on the couch with him all day. And to your boyfriend, for not being the girlfriend he deserves, even though he doesn’t want to hear it.
And there are moments when you just want to buy some bananas down the street, and your boyfriend tells you he thinks that really wouldn’t be a smart move healthwise, and deep down you know he’s right but you just wanted some goddamn bananas and this is just ridiculous.
It’s 10:56 now and I’m so tired. I let the dog out and wrote this and now I have to get an hour of sleep. This illness is really, really weird. Will it ever go away? I don’t know. I’m fighting for that every day. And I will never give up. You’ve only got one life, after all.
End of rant.