8:30pm April 20, 2015

Dear Asshole,

Yes, you. I’m not reading you anymore (you’re on ignore, so don’t even try to respond), but you obviously read me or you wouldn’t have responded to my post the way you did.

I am recovering from two side-by-side stays at the hospital, both due to a combination of feeding tube problems and a nasty stomach virus.

When I wrote the post about not being an octopus, I was talking about my inability to handle my own medical care without assistance.

This has almost led to my death on more than one occasion, and to many, many hospitalizations that included delirium and amnesia as major features.

I forgot my name – both my given name, and the name I changed it to. I forgot my identity – I thought I was at least fifty different people throughout the world and throughout history, including my own mother and my own child (I don’t have a child) and grandchild (ditto). I forgot that my father was dead. I am still missing a huge chunk of the past year, and it doesn’t seem to be coming back.

I was trying to explain to people why this keeps happening over and over, and how to do something about it beyond wait until I die from one of these hospital stays. (A real possibility, given the combination of medical conditions I have.)

Telling me to stop feeling sorry for myself (I don’t) and to lose weight (I can’t – I’m on a 1500-calorie-a-day diet in a feeding tube, and I eat soup broth that I drain out of my feeding tube, that’s hardly the reason I’ve gained weight… look up dexamethasone and you’ll see why) is not only ridiculous but harmful. If I didn’t know you were full of shit, I would possibly have listened to you. It’s hard to stop doing something you’re not doing (and believe me, I’m as bothered by elements of the chronic illness community that encourage others to worship self-pity as you are – probably more than you are, because you just use it as an excuse to rag on people, and I actually am concerned about the damage it’s doing). And, I’ve been told by my doctors, it’s impossible for me to voluntarily lose weight when I have to be on steroids in order to survive. (My body doesn’t make ACTH or cortisol, I will be on steroids the rest of my life.)

Talking about a problem doesn’t mean feeling sorry for yourself about a problem.

Talking about a problem is often the only way to solve a problem.

You are trying to prevent people like me from talking about problems in ways that might lead to solutions.

That means you are trying, for reasons that are surely egotistical, to do things that, whether you care about this or not, could lead to people dying. And there are serious things to be said about how fucked up that is.

Fortunately, when I used similar words to ask for help, I have gotten help. But no thanks to anyone like you. People like you only serve to stir up self-hatred and self-doubt in people who are already disabled. I read some of your other stuff, and all it was was hate. There was nothing in it that was constructive or useful feedback for anybody. You just want people to bully.

I won’t be bullied. Which is why you are on ignore. This post is not for your benefit, but for the benefit of any of my followers who might have run into you as well. I’ve seen you trashing self-diagnosis while claiming simultaneously to have medical knowledge of total strangers.

(That’s what “lose weight” is, in case you’re confused. Few of my major medical problems have anything to do with weight. And I actually lost about seventy pounds due to gastroparesis and adrenal insufficiency – this was not considered a good thing. Nor was gaining a lot of the weight back due to steroids for the adrenal insufficiency, but the basic problem is weight fluctuations due to illness and meds, not that I “need to lose weight”. Losing 70 pounds was highly unhealthy and every doctor I have seen acknowledged that. That’s why I have a feeding tube. You know nothing of my medical problems, their causes or their solutions yet you’re so willing to condemn self-diagnosis (I’m not self-diagnosed with anything, but I know plenty of people who are, many of whom went on to get official diagnoses) at the same time as diagnosing people yourself, without a medical license or an exam. So yeah. Not cool.)

To people in general: If you see someone acting like this, try not to let them get to you. Put them on ignore, and then go on with your life. Not that all criticism is bad, but this person’s “criticism” is pure bullying, not motivated by concern.

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