8:55pm October 12, 2013

➸ Urocyon's Jaunts: chronicallyinvisible: I think people can be really dismissive without...

chronicallyinvisible:

I think people can be really dismissive without meaning to be. Every time someone says “At least it’s not life threatening” or “Things could be worse”, I don’t think they realise how much it undermines you.

I didn’t think to add earlier that often the same people who…

Yeah.

Also people assume that you can only die from terminal illnesses. When a terminal illness is just an illness where you can easily PREDICT that it’s going to kill you.

I have illnesses where I could die within a week from them or I could live to ripe old age or anything in between. And if I do die, I’m unlikely to have more than a month warning and that’s pushing it.

So I have to live with the constant possibility of death shoved right up against the constant possibility of life, and that’s a totally different experience from an illness where you are either going to live indefinitely, or you know roughly how long you have. Not that those estimates aren’t wrong all the time but they’re still a different experience. (I call what I have, precarious illness rather than terminal illness.)

The other thing is with the kind of thing I have, if you do die… it’s like it would go how it has many times before, except at a certain crucial turning point I would die instead of get better. So I know kind of how it would go. And the part that bothers me the most is that…

First I aspirate. And when I aspirate, I get a really good amount of stomach fluid in my lungs at once, it’s not small and undetectable more like large and choking. And after that so much of my energy is taken up by coughing and being sick, that I barely have the energy to even care that I don’t have the energy to say goodbye to my friends.

And that has completely changed the way I do relationships with people. I feel like I really have to be careful never to take my friends for granted. Because if I did, I might not be able to say goodbye later, and that would be awful for all of us if something happened.

And it is really hard to even get healthy people to understand this kind of situation because it’s not what they normally hear about. AND because it is smack dab in the middle of one of their worst fears, a fear so strong they’ll go to great lengths, even harming others, to hide it from themselves: that anyone could die quickly at any time without any time to plan or say goodbye or have the classic deathbed scene where they get to resolve everything with their loved ones.

I still sometimes have nightmares about that last part, where I’m in the hospital and they call in my friends and family to say goodbye to me and I die while they’re still collecting everyone into the room. Which is very realistic and common but not very Hollywood and not at all what people want to hear.

And that terror of not being in control of their own deaths, and of the fact that death is common and often sudden. That drives so much of healthy people’s reaction to chronic illness. Because chronic illness, and especially precarious illness, completely brings those fears up front and center in people’s minds.

So they go into denial. They convince themselves we aren’t that sick. They convince themselves they’ll never be sick if they can only exercise and eat right and stay skinny and all the other things that will magically make them healthy and immortal.

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