2:12am October 19, 2013

Some idiot went to my main blog and told me I couldn’t need a feeding tube because I’m “maintaining my considerable weight”.

(He had to put in the dig at me for being fat. Because he had to.)

Then he proceeded to tell me that when he had stomach cancer (which is… uh… not gastroparesis, and therefore can’t be compared, at all) he lost a certain amount of weight, and the fact that I was still fat meant that “something didn’t add up”.

When replying to him, I did some conversions, because he wrote it all in kilograms.

And when I did those conversions, I figured out that during my two periods of rapid weight loss, EACH TIME I lost more weight than he did in the same amount of time. And that all total, I’ve lost FAR more weight than he did.

(He lost about 26 pounds. In my first period of rapid weight loss I lost 40 pounds. (Then I gained some weight back, by going on six different nausea meds plus a liquid diet of Ensure Plus.) In my second period of rapid weight loss I lost 27 pounds. Then I gained some of that back, but have slowly lost about 17 pounds since I thought I’d stabilized at 210. All total, over time I’ve lost 47 pounds. I started at 240, I now weigh 193. And this guy has the nerve to tell me I’m “maintaining my considerable weight”.)

I don’t know whether to laugh or to throw things. And the fatphobia disgusts me. Especially given that gastroparesis can cause weight GAIN in some people, and that’s a little-known fact that leads to a lot of pain and suffering and malnutrition and sometimes even death.

I started out thinking he must’ve lost all this more weight than me since he was acting like he did. Then I did the number conversions (he was talking in kilograms which I’m unfamiliar with) and just sat there laughing at him.

But then I stopped laughing because I’ve seen SO MANY people with gastroparesis and feeding tubes asked questions like this, or treated with scorn and suspicion. I’ve even seen it done to people who are only able to maintain a normal weight at all because of their feeding tube, but because they’re not skeletally thin they’re assumed not to need one (even though they WERE skeletally thin BEFORE THEY GOT THE FRIGGING FEEDING TUBE). And because it took doctors an extra couple weeks to realize the severity of my malnutrition last fall because their first assumption was “if you’re fat, you’re eating”.

The reality is that it takes me being about 110 pounds before I start looking skeletal in any way, and 100 before I look really really awful. So in the eyes of people like this guy, I’d have had to have *INSTANTLY* lost 130-140 pounds, before there would be any obvious problem. Which means I’d have died of malnutrition or heart problems or other complications of starvation long before I’d ever have gotten there. And that HAPPENS to fat people all the time. It’s why fat people with anorexia go undiagnosed, too. It’s why fat people with all kinds of diseases get treated like the diseases are less severe than they are. It’s why fat people die of conditions that thin people would be treated for.

I AM actually glad that I’m fat, though, because the malnutrition would have presented even more problems if I had still been thin. And my current slow weight loss would be a much bigger issue. Being fat gives me wiggle room that thin people don’t have. But it doesn’t mean that losing 40 pounds or 27 pounds in a very short period of time isn’t a huge, huge deal. Because weight is only one component of malnutrition. Long before you become thin, you start burning muscle as well as fat. Muscle includes things like the heart. That is why they almost put a feeding tube in me last fall. They only stopped because they were able to get me on a huge combination of nausea meds and a liquid diet that would postpone the need for a feeding tube for… a few months really. But they don’t generally consider feeding tubes for people who are “maintaining their considerable weight” (even in situations where they actually SHOULD consider them). They were considering a feeding tube because they’d seen me night and day all the time and seen me unable to eat enough to maintain a stable weight, even on five nausea meds. It was the sixth nausea med that did the trick for me. And the second time, the feeding tube was for dual reasons, for pneumonia prevention as well as for maintaining weight.

But, as I meant to mention on here but have kept forgetting (or did I mention it? I don’t remember)… I’m actually not maintaining weight. I’m not losing fast enough to be a huge concern to doctors, especially since I’m fat already. But when I first got on the feeding tube I gained weight until I was 210 pounds. Now I’ve slowly dwindled down to 193 again, which is the lowest I ever was before.

And… I feel weird about all this.

Because half of me is slightly alarmed I’m losing weight, and half of me (the side that internalized all the fatphobia) is almost relieved, and then I get mad and sickened at myself that I’d be relieved in any way at having a disease that’s making me lose weight, even slowly. I mean I wasn’t happy that I lost weight when I lost it so fast, and I got so angry at anyone who said “You look like you lost weight! What’s your secret?” But losing it more slowly, and less dangerously, makes all the sides of me come out that I regret even having, making me wonder “Hey maybe I can become a closer to normal weight than I’ve had in ages…”

And then I just feel sick to my stomach, and not because of the gastroparesis, but because I’m such an idiot myself when it comes to stuff like this. I just try not to show it. Usually. But having my weight brought up like that brought it all out and now I feel sick and disgusted with myself and angry at that guy for triggering this all. Because apparently I deserved to die after all because I’m fat and fat people aren’t really sick because sick people lose ALL their weight INSTANTLY. WTF.

(For anyone who doesn’t know it… there are many, many reasons for having feeding tubes and being dramatically underweight is only one of them. Other reasons include being unable to swallow, unable to use your stomach properly, the need to drain the stomach, and zillions of other things. And fat people can die of malnutrition and other complications of being unable to eat, long before we ever become skinny. That’s why you give someone a feeding tube once you realize they can’t eat (or whatever the reason is), you don’t wait around for them to starve half to death.)