as small as a world and as large as alone

4:10am June 28, 2013

flaresof-fibro:

Why is a chronic illness shitty?

Because it is chronic, not lethal.You have to live through it, find a way to cope everyday, work out how to do as much as you can to make life meaningful….without tipping over your body into meltdown.

We get better days, but it is still chronic. It doesn’t leave, it just stays with us in a variety of strengths. You don’t know how your body is going to handle tomorrow.

My reply will go up soon, I don’t mind the general idea but one part was really offensive to me.

So here’s my reply:

Whoa what?

I get the rest of it.

But I have chronic illnesses that could end up being lethal. They’re not terminal (as in, my death is not assured from them), they’re more what I’d call precarious.

As in, my stomach is paralyzed and that means I aspirate stomach fluids. Not small silent aspirations, but waking up unable to breathe and then coughing bile out if my lungs for hours and then getting pneumonia that aggravates and is aggravated by my bronchiectasis.

Meaning the combination of gastroparesis and bronchiectasis could kill me this week or I could die of some random cause 40 years from now. I’ve had pneumonia something like 5-8 times in the past year though, so there’s a very good chance I won’t last past my thirties or forties. Unless all the techniques I’m using to stop the aspiration work really well. Which is also possible.

So… yeah chronic illness sucks. But I’d far rather live the next 40 years with the chronic illness and pain I’ve had the rest of my life, than live only a week more.

So no my problem is not that my chronic illness is not lethal. My problem is that it may well be lethal.

I’ve made my peace with whatever might happen. Meaning death doesn’t scare me. I consider it a friendly and necessary force in the world, without which we wouldn’t have life either.

But I’d far rather live.

And if I do live, my problem with chronic illness won’t be “that it’s not lethal”.  The entire idea that the problem is that we don’t die of it… I assume maybe you didn’t think through how that statement would feel to people who either know they will die of their illness, or know we may die and possibly soon?

Because most of us would give our eye teeth to live longer, even with a chronic illness.

I’ve lived all of my near-33 years with chronic illness and pain and I want to live at least as long. My parents both have chronic illness and are in their sixties and seventies. Both of them are taking every step possible not to die of it, even though my mother had actually been told by doctors that she’s dying (of the same illnesses I have, as far as we can tell) and therefore they refuse to treat her. She’s had to go all the way to the Mayo clinic to get life saving treatments. I just had to recently organize on tumblr to pressure my doctors to give me life saving treatments when I was being pressured to just accept I’d eventually die of pneumonia.

I’d just… I can’t even explain how much we want to live. My 70-something dad had a cancer scare and then a stroke and went through pretty grueling surgery because he wants to live. My mom is going through lots of surgeries. I just got a feeding tube this spring. 

All because our problem is absolutely not that our illnesses won’t kill us. And we aren’t unusual among people with precarious or terminal or presumed terminal conditions.

I’m not sure if you really meant to say that chronic illness is bad because you don’t die, that it’s worse than death because you have to live with it every day…

..But I can say there are a lot of people who are dying or could die, who know what chronic illness is like, who absolutely choose life with chronic illness over death. That’s the choice I made when I got the GJ tube because I couldn’t eat anymore and because I needed to drain stomach fluid instead of getting pneumonia from it.

None of this is to say that chronic illness doesn’t suck donkey balls at times, but you may want to rethink what you’re saying. I’m especially sensitive to such things because my doctors already often believe my quality of life is so low it’s not worth treating me. And because I’m autistic and lots of parents of autistic kids say they wish their kids were dying of cancer instead because autism is worse because it’s for life. (Which is offensive both to autistic people and people with cancer.) And….. wrong way to go about explaining.

Yes it sucks because it involves prolonged pain and suffering for a lot of people. No it doesn’t suck because we aren’t dead.

And you want to be real careful who you say this around because some people use it to say we are better off dead our even to justify murder.

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